Pieces about ways to approach health problems, chronic illness life, and related advocacy issues. ★
- Leafly – Does endocannabinoid deficiency play a role in these common illnesses?
- Leafly – Why isn’t the endocannabinoid system taught in medical schools?
- Leafly – Can orgasms help your endocannabinoid system?
- Leafly – Endometriosis is painful as hell. At least there’s cannabis
- Leafly – How cannabis helps ‘spoonies’ soothe the symptoms of chronic illness
- MindBodyGreen – Here’s What I Wish More People Knew About Chronic Illness
- Ravishly – “Resting Niceface” Made My Invisible Illness Go Undiagnosed For 25 Years
- Ravishly – Why People With Chronic Illness Fake Being Healthy
- Southeast Living – Chronic Illness Gets Even Worse in the Winter
- SheKnows – How a vitamin deficiency nearly paralyzed me
- SheKnows – What I learned after 10 months of being sick and stuck in my apartment
- The Mighty – There Is No Shame in Being Ill
- Leafly – What’s next for psychedelic decriminalization?
Does endocannabinoid deficiency play a role in these common illnesses?
Meg Hartley by Leafly
Published on June 7, 2019 • Last updated July 28, 2020
For many suffering from chronic illness, cannabis is a godsend. From those dealing with the wrath of inflamed digestive systems, to the ones combating global musculoskeletal pain, and the millions who report that the agony in their heads is just the beginning of their symptoms—cannabis can help these fighters with their load of physical woes.
The ECS is present in every major bodily system, which is how its dysfunction can theoretically cause such a variety of conditions—and how cannabis manages to treat them.
But why? To explain, we need to back up a bit. You probably know that cannabinoids (like the popular CBD and THC) interact with the body’s endocannabinoid system (ECS), and that our bodies produce natural endocannabinoids that work with the ECS receptors to maintain health in all the other bodily systems. But do you know what happens when we don’t produce enough of these endocannabinoids?
Neither does science; not really, anyways. But Ethan Russo M.D., Director of Research and Development of the International Cannabis and Cannabinoids Institute has theorized that clinical endocannabinoid deficiency could be the cause behind irritable bowel syndrome, fibromyalgia, migraine, and other treatment-resistant syndromes. The ECS is present in every major bodily system, which is how its dysfunction can theoretically cause such a variety of conditions—and how cannabis manages to treat them.
These conditions, along with others that fall into this realm, are generally thought to be incurable and chronic, usually lasting for the rest of the sufferer’s life. I spoke with Dr. Russo about this matter, and he offered hope for chronic illness fighters, saying that since these conditions are generally acquired (rather than congenital, from birth), it seems to suggest an ECS disturbance is behind the illness. So hopefully it can be reversed in some fashion.
What is clinical endocannabinoid deficiency?
The theory of Clinical Endocannabinoid Deficiency (CED) explains that these health conditions are due to a deficiency in endocannabinoid levels, akin to the way neurotransmitter deficiencies are behind other illnesses—like serotonin deficiency in depression. In other words, the theory posits that the cause of these syndromes is an insufficient amount of endocannabinoids functioning in the ECS.
The theory was first posed by Dr. Russo in 2001. Since then, he’s published several more well-cited papers on the topic.
“The vast majority of physicians just have no background in the ECS. It’s just not being taught.”
Dr. Russo’s 2016 paper, Clinical Endocannabinoid Deficiency Reconsidered, revisited this issue after substantial evidence for the theory was recorded. Firstly, statistically significant differences of the endocannabinoid anandamide were recorded in the cerebrospinal fluid of migraine sufferers. (Similar results have also been found in fibromyalgia fighters.) Decreased ECS function was found in another condition thought to fall into the CED rubric, post-traumatic stress disorder (PTSD). And clinical data has shown that cannabinoid treatment and lifestyle changes aimed to promote the health of the ECS produced evidence for decreased pain, improved sleep, and other benefits in fighters—yet more evidence linking ECS dysfunction to these conditions.
From the paper: “If endocannabinoid function were decreased, it follows that a lowered pain threshold would be operative, along with derangements of digestion, mood, and sleep among the almost universal physiological systems subserved by the endocannabinoid system (ECS).”
The CED theory also posits that such deficiencies could be present due to genetic reasons or be the result of a disease or injury.
The study primarily focuses on IBS, migraine, and fibromyalgia—all of which involve increased pain sensations in the affected areas—but disorders that may fall under the CED rubric include: PTSD, glaucoma, cystic fibrosis, types of neuropathy, phantom limb pain, neonatal failure to thrive, infantile colic, menstrual pain, repetitive miscarriages, hyperemesis gravidarum, bipolar disease, and many others. Many of these diseases are little understood and remain treatment resistant.
How to improve ECS “tone”
Unfortunately, there’s no magic-pill solution here, but there are methods to improve your ECS “tone,” which is the term used to describe the functioning of this little-understood system. Dr. Russo had some advice on the matter—and it’s all about taking good care of yourself to help ensure that the ECS doesn’t get out of balance. Here’s some tips gleaned from his wisdom:
- Heal your gut: There is increasing evidence that the gut microbiome, and the levels of bacteria within it, are a major regulator of the ECS. People should avoid unnecessary antibiotics, as these damage the natural microbiome balance in the gut. Also try pro- and prebiotics to get that biome in shape.
- Eat right: Pro-inflammatory foods, such as fried foods with trans-fats, or too many calories in general are bad for the ECS. It’s also important to cultivate consciousness about what you’re eating—how you were taught might not be best what’s best for your body now.
- Exercise: Sedentary behavior is harmful to the ECS, and exercise is essential to improving tone. However, many fighters of chronic illness will experience a flare in symptoms if they push it, so a low-impact aerobic program is recommended for many.
- Look at family health: ECS dysfunction isn’t genetic like eye color, but there are genetic tendencies, so be extra careful if there are others in your family who are fighters of chronic illness. Also be mindful about unhealthy habits you may share.
- Sleep well and stress less: The ECS loves balance, and a body that’s stressed out and unrested is great at throwing all kinds of systems out-of-whack. So get those eight hours and get real about managing stress.
Dr. Russo says that there’s no “cure” for these conditions, but following these guidelines offers the opportunity for a major intervention in symptoms—which can look a whole lot like a cure.
As for what’s next, Dr. Russo is working on getting studies funded and running to provide further information on this topic, especially in relation to ECS and the gut’s microbiome. He’s also working on a diagnostic test for fibromyalgia sufferers—something that would be life-changing for those searching for a diagnosis, or who need to prove that they really have it.
And for now, he says that there needs to be more awareness about the ECS.
“The vast majority of physicians just have no background in the ECS,” he said. “Despite it being discovered almost 30 years ago, there’s been very little uptake of it in med school curricula—it’s just not being taught, and whether that’s an unfortunate association with the word ‘cannabis’ is unclear. But clearly we have a knowledge deficit in regard to it, and until we rectify that we won’t have the ability to treat our patients more effectively.”
So the next time you’re at the doctor, whether you suffer from a chronic illness, or not—think about asking your doctor what you can do to improve the health of your endocannabinoid system, just to see if they know what it is. (And maybe put some pressure on them to find out.)
Why isn’t the endocannabinoid system taught in medical schools?
Meg Hartley for Leafly
Published on January 10, 2020· Last updated July 28, 2020
I am currently dependent on medical cannabis, and despite loving the plant, I’m kinda bitter about this fact. And it’s not the usual lamenting of “Why me?” that so often goes with illness; it’s because the medical professionals I encounter have little to offer about the origin and treatment of my disease, fibromyalgia. A major reason that they’re at a loss with it—and so many chronic illnesses like it—is because it may be sourced in the endocannabinoid system (ECS).
As a Leafly reader, you might already know that the ECS is a bodily system made of receptors located throughout the body and that it works with all other systems to maintain homeostasis, or optimal functionality.
But did you know that this vital system isn’t covered in medical school despite the fact that studies worldwide have been articulating its prowess since 1992?
Medical schools are “too full” for additional information
And do you know what their primary reason is? Because they say they “don’t have time to teach it.” That’s right—med schools are apparently no longer open to integrating new science into their curriculums. We reached out to many medical schools for comment, but repeated emails went without response.
“The typical response is, ‘What will we eliminate?’ However, that ignores the importance of this system and its fundamental role in regulating physiology in every aspect.”
According to Dr. Ethan Russo, board-certified neurologist and psychopharmacology researcher, the common response is that they’d have to remove something else from the curriculum to make room for it.
According to Dr. Russo, “The medical curriculum is just jam-packed. I went to med school back in the ‘70s, and even at that point there was just no slack in the schedule. What one has to cram into particularly the first couple years of basic science, is rather astounding. And now there’s been an additional 40 years of scientific discovery that also has to be incorporated. Administrators are always going to be defensive about that. The typical response is, ‘What will we eliminate?’ However, that ignores the scientific importance of this system and its fundamental role in regulating physiology in every aspect.”
One would hope that the response to realizing there is a vital bodily system missing from medical school curriculum would be something thoughtful, like, “This system works with all of the other bodily systems and is essential to maintaining health in the body—maybe it’s time to reassess and reorganize.”
But, alas, the party-line solution is actually to just not teach another piece of medicine, which would remove it from practice. It’s as if medicine goes into a tool belt, and rather than reconfiguring a more suitable tool belt when full—they’d instead just toss aside an irreplaceable tool.
The ECS is integral to the function of all the “major” systems
Dr. Russo says that the idea of not educating doctors on the ECS is incomprehensible because it is fundamental to how our bodies work.“A prime example is that there are more cannabinoid receptors in the brain than there are for all of the neurotransmitters put together,” he said.
“One could easily argue that you can’t understand how neurotransmitters in the brain work without knowledge of the endocannabinoid system.”
As you’ve probably ascertained, this is a fact with significant implications. He continues, “One could easily argue that you can’t understand how neurotransmitters in the brain work without knowledge of the ECS.” Additionally, he confirmed this could also imply that there are more opportunities for cannabis to work with the body than pharmaceuticals.
The ECS is also responsible for maintaining the homeostasis of all of the other bodily systems—which is a fancy way of saying that it keeps balance in the other systems, ensuring that they are functioning optimally. It’s also often described simply as the way the brain communicates with the body. Or, as Russo put it in our interview, “Everything in the body is connected, and this is the glue.”
Because the ECS appears to regulate actually recognized bodily systems, many things go awry when it doesn’t function correctly. Endocannabinoids have been observed to directly and indirectly influence a variety of physiological systems that control appetite, pain, inflammation, thermoregulation, intraocular pressure, sensation, muscle control, energy balance, metabolism, sleep health, stress responses, motivation/reward, mood, and memory.
These functions are not minor details—if you were to lose even a single one of these abilities, it could significantly alter your daily life. Chronic illnesses, which last three months or longer and are generally considered “incurable,” affect 40% of Americans. Why is it that so many of our bodies are afflicted with conditions that modern medicine cannot do anything to absolve?
Could it be that we’re missing a crucial piece of the puzzle? Surely, there must be something else going on.
What do cannabis and pharmaceuticals have to do with it?
When asked why the ECS isn’t being taught in medical schools, another common response was that there are presently very few medications that interact with it—but how will there ever be if the medical community doesn’t even regard it in the first place? And why does it matter, anyways—do doctors only need to know about bodily systems that can be treated via the pharmaceutical industry? (And even the answer there is a plutocratic ‘yes,’ then do the available synthetic cannabinoids not count?)
These are apparently not questions that are often discussed in the medical community. The basic consensus seems to be that though medical students ought to be taught about all illnesses—not just those that there are presently pharmaceuticals for—that’s simply not how it works.
Another factor is, of course, the federally-illegal status of the plant that works so adeptly with the ECS; still holding its ancient and never-been-true title of ”Schedule I–Drug with no currently accepted medical use.” But since the ECS generally functions without the help of cannabis (thanks to our naturally occurring endogenous cannabinoids), one wonders why this is show-stoppingly relevant—again, shouldn’t doctors need to know about bodily systems that don’t already have viable medications? Isn’t that all the more reason they should be trained in what we do know about the ECS, so they may help patients keep the vulnerable system unharmed?
This next revelation will not surprise you: According to Russo, stigma around cannabis and a lack of funding as a result also appear to play a role in this reckless and willful knowledge gap, “One has to imagine that a prejudice against cannabis, fear of cannabis, and lack of funding is spilling over into a pejorative effect on education about the endocannabinoid system.”
Hope and change
Even though Russo says that grad students rarely want him as a mentor, some colleges are hedging their bets that tomorrow’s generation will have a different take. The University of Maryland School of Pharmacy is one such school, now offering a Master of Science (MS) in Medical Cannabis Science and Therapeutics. Leafly talked with Andrew Coop, PhD, their Professor and Associate Dean for Academic Affairs, who seems hopeful that logical changes in this area are on the way.
“The reason we started the program was because so few programs focus on the health benefits of marijuana,” Coop said, “the pluses, the minuses, the strengths, where further research needs to go, where the indications have good strong evidence, where there is no strong evidence. We are teaching 150 students at the master’s level to understand all aspects—but also to be able to critically assess what the current state of the art says and doesn’t say, and what further studies need to be formed so that we can move forward in a systematic manner.”
Their twelve courses cover a comprehensive range of topics, from an introduction to the history and culture of cannabis, to the highly technical “Genomics and Pharmacognosy,” to “Expert Seminars and Case Studies” where students identify knowledge gaps in the science and design an educational intervention.
Coop is looking forward to more sweeping changes in policy and legislation. “To me, the bottom line is that we need change at the federal level, such as the MORE Act, before we’ll see more med schools include it in their curriculum,” he said. “Once we get things such as the decriminalization of marjiuana, I predict more schools will include it. There is a want and a need for education in all aspects of marijuana.”
Until that day, those of us with diseases suspected to be sourced in ECS malfunction must wait. One day, researchers like Dr. Russo will have the resources to provide necessities like a diagnostic test for fibromyalgia, something he’s waiting on funding to get rolling on—a development that could change the lives of millions.
As Dr. Russo told us, “This failure to address ECS education appropriately is in unforgivable breach of scientific trust and a major disservice to the public health.”
Can orgasms help your endocannabinoid system?
Meg Hartley for Leafly
Published on May 12, 2020 • Last updated July 28, 2020
What if sufferers of certain health conditions having to do with endocannabinoid deficiency were able to heal through the power of orgasm? That question has been on my mind since reading a 2017 study which hypothesizes that endocannabinoids can play an important role in the sexual response cycle.
Endocannabinoids are cannabinoids that the body produces which bind to and activate cannabinoid receptors, much like THC and CBD in cannabis. Specifically, the above study showed significant increases in the body’s levels of the endocannabinoid 2-AG post-orgasm—which could help contribute to the delightful experience we colloquially refer to as “post-coital bliss.”
So, if you’re trying to improve the functioning of your endocannabinoid system (ECS) and thereby related health issues, should you be prioritizing regular orgasms in your self-care routine? I delved into this question with a couple cannabis experts to find out.
Getting down to raise endocannabinoid levels
Dr. Genester Wilson-King, MD, obstetrician, gynecologist, and cannabis advocate, was also intrigued by the 2-AG study mentioned above. “Endocannabinoids … might play a very important role in the sexual response cycle, leading to maybe a better understanding and treatment of sexual dysfunction,” she said.
When asked if regular orgasms could help ECS function, Dr. Dustin Sulak, D.O., said: “There’s a little bit of evidence supporting this theory, not conclusive; but the ECS does well with similar stimuli that create a short-term strong production of cannabinoids, like exercise.”
I asked Sulak if orgasms could be a “double-whammy” since they stimulate the ECS by both being an enjoyable exercise as well as directly boosting endocannabinoid levels: “Absolutely. Sex [with orgasm] is the double-whammy for sure. It’s a triple or quadruple whammy. It involves touch. In animals, touch and social grooming are strong ways to stimulate endocannabinoid release. I think many people don’t have enough social grooming activities or physically touch each other on a daily basis, but feel better when they do.”
So how often should one be taking advantage of these benefits? According to Dr. Sulak, “I would suggest at least once a day doing something that strongly stimulates endocannabinoid activity. And so, perhaps if it’s a day when somebody didn’t have a chance to exercise, or dance, or sing, and the day’s winding down, and they realize, well, it’s time for a different type of practice, I would say go for it.”
Women could actually benefit from more than one orgasm per day. “I think experts in the orgasm field would recommend, especially for women, to have several per day for optimal health. And you know, typically for women, one orgasm can follow the next. And so there’s not a good reason for stopping at one,” he said.
Dr. Wilson-King noted that cannabis can potentially help bring back multiples for some women: “I don’t know that it can help a person who is not multi-orgasmic, but a person who has had multiple orgasms in the past, certainly using cannabis can enhance that.”
But it’s different for the fellas. “What a lot of men don’t realize is that they can absolutely have orgasms without ejaculating,” said Dr. Sulak. “The practice is essentially to approach orgasm very slowly and cautiously, then wait in that space that leads up to orgasm. It starts out feeling like a very narrow space where they kind of get right up to the edge and then fall over. With enough practice that edge can become miles long, and they can remain at the edge and have all sorts of orgasmic feelings and actual contractions in their body without ejaculation.”
Self-lovin’ and wellness
The aforementioned study on 2-AG studied masturbation, and both Drs. Sulak and Wilson-King stressed that one does not need to be partnered to enjoy the benefits regular orgasms can have for the endocannabinoid system.
Dr. Sulak elaborates, saying “I really want to encourage people to not feel like they need a partner to achieve the health benefits. So many people think, what am I going to do right now? Oh, I’ll either jog or maybe I’ll meditate or something. And the idea of a sexual health practice probably doesn’t even occur to most of the readers.”
So, the next time you’ve got a free hour to engage in some wellness, remember Dr. Sulak’s words: “Meditation, running, and masturbation can all produce increased endocannabinoid levels and states of euphoria and mental clarity.”
Cannabis can help release endocannabinoids
While Dr. Wilson-King doesn’t recommend cannabis first for help in getting to orgasm, she said it absolutely can help for some: “Cannabis is a libido enhancer. It helps you to relax, helps you to have maybe more body awareness and sensitivity … Pharmaceuticals are usually single molecular substances that have one effect, whereas cannabis is multifactorial, such that it affects the brain, it affects the body, it affects the vaginal tissue, it affects the sensitivity. The advantage of cannabis is its multi-pronged approach.”
She also noted that cannabis can do wonders for women who deal with painful sex, saying, “It can relax the vaginal muscles, relax the mind, and has the patient focus more on her partner and her body as opposed to worrying about pain.”
As for how much to use, she said, “Using cannabis for sex is generally dose-related, especially for men—lower doses really help, whereas higher doses, you get too stimulated and can’t focus and may have difficulty, men more than women, but low doses are effective for both.”
Dr. Sulak is on the same page. “The goal I think for someone that is really wanting to use this information for health would be to consider using a little THC at a low dose to help them kind of change their gears and compartmentalize the rest of their day, creating a sacred space and a new mindset as they approach the practice. But not to use so much THC that they’re very intoxicated. Rather, they should be trying to use their own equipment—to get high on their own supply,” he said, referencing tapping into one’s own endocannabinoid.
Endometriosis is painful as hell. At least there’s cannabis
Meg Hartley for Leafly
Published on September 23, 2019 • Last updated July 28, 2020
One night in 2014, intense menstrual cramping had driven me home from a dinner out with a friend, leading to full-on sobbing by the time I got back to my apartment. It wasn’t the first time I’d experienced severe endometriosis symptoms, I’d been diagnosed long ago, but I usually kept the pain from complete meltdown levels with cannabis. Unfortunately, this was pre-legalization, and “my guy” was dry.
As I Googled to see how much Ibuprofen I could take before endangering myself, the pain shot up again. Twenty minutes later, I’d broken out in hives, and waves of darkness flooded the corners of my vision. I prayed I’d lose consciousness, to no avail. It was a very, very long night.
When endometriosis pain gets like that, it feels like barbed wire has been looped all over your guts, and some jerk is slowly, yet fiercely, twisting the wire—pulling on the entangled tissues and organs, threatening to rip them apart. (And then someone dares to say, “It’s just your period,” and you claw their face off!)
It’s actually bodily tissue looped all over your guts
Unfortunately, what endometriosis feels like is actually pretty accurate to what it is.
A woman’s period is a result of the shedding of endometrial tissue built up from the hormonal cycle. But in endometriosis, this tissue grows outside of the womb, where it’s unable to shed. This tissue is often described as looking like a web, wrapping itself over organs outside of the womb, and even connecting them. (In extreme cases, the organs actually become fused together, called “frozen pelvis.”)
Because this tissue becomes trapped in the body, when it’s time for the body to do its monthly thing—it really freakin’ hurts. But endometriosis doesn’t stop there. In addition to “severe menstrual cramps” (an infuriatingly minimizing description), this wandering tissue also leads to chronic lower-back, abdominal, and pelvic pain; painful intercourse; painful urination and/or bowel movements; IBS symptoms; and infertility. Endo fighters—an estimated 11% of women—also have increased rates of ovarian cancer.
The treatment options offered to fighters are paltry. Hormonal birth control is usually the first thing recommended, but many women react adversely to it. Painkillers are the next line of defense, from stomach-damaging NSAIDS to life-ruining opioids—none of which a great option for decades of ongoing use. Other fighters get the endometriosis tissue surgically removed, which obviously has substantial side effects, as well as doing nothing to keep it from growing right back.
Luckily, we have cannabis.
From cannabis concern to convert
Foria is a cannabis company that specifically targets female health concerns, like endometriosis, offering innovative products like suppositories—an invention that’s arguably better than anything the pharmaceutical industry has offered sufferers in decades.
We spoke with Kiana Reeves, Director of Education at Foria, to see how their efforts are faring—and so far, so great. These sales are accompanied by thank you notes that serve as a testament to the power of cannabis to treat endo’s symptoms.
One such testimonial comes from Ashley, who was raised to fear cannabis, but worked her way to it from general herbal medicine after years of negative experiences trying to combat endo with pharmaceuticals. In addition to bringing back her sex life, cannabis treatment led to less endometrial tissue needing to be removed in surgery—to say the least, she’s now a convert. Her initial fears about cannabis were further compounded as a mother, but she now has a non-intoxicating arsenal of CBD and low-dose/topical THC tools at her disposal.
The science on endometriosis and cannabis
Traditional methods of endometriosis treatment merely attempt to mitigate symptoms, but there’s evidence that cannabis can potentially treat the actual condition. Cannabis and the endocannabinoid system (ECS) work together to fight aspects of endo in many ways—and, for once, the science on why cannabis is so successful at treating endometriosis is (relatively) abundant.
Migration and growth
Since the source of endometriosis is cells being where they shouldn’t be, tapping into the ways they migrate will be crucial in understanding, and eventually curing, endometriosis. The most promising development in regard to this area is how cannabis interacts with the N-arachidonyl glycine receptor (NAGly receptor), more commonly referred to as the GPR18 receptor, which works with the cannabinoids in cannabis as well as the body’s natural endocannabinoids.
The name of the game with the ECS is all about balance, and endometriosis is no exception to the rule. While the cannabinoid CBD blocks the activation of the GPR18 receptor, which can stop endometrial cells from migrating, there’s also evidence pointing to THC causing the migration of cells by activating this receptor. Because of this, it might be wise to counteract pain-relieving THC with CBD for treating endometriosis. Endometrial cells multiply, like cancer, and there’s also evidence that cannabinoids can also stop these cells from this proliferation.
The pain involved with endometriosis is the most impactful aspect of the disease for most women. As described above, this literally “gut wrenching” pain is often completely debilitating—and for many women it lasts a whole lot longer 2-7 days, with pain extending outside of menses or a longer menses duration. But cannabis comes to the rescue again, fighting pain in several ways.
THC does its pain-squashing magic not by merely distracting from symptoms—which sure doesn’t hurt—but by deactivating nerves in endometrial cells via endocannabinoid receptors. CBD also has its own super power, desensitizing the pain receptor TRPV1. And cannabis has one more pain-fighting weapon in CBD with its ability to take down inflammation, which leads to less irritated nerves, thereby, less pain.
Improving the tone of the endocannabinoid system
There’s mounting evidence to show that imbalances in the endocannabinoid system (ECS) are the force behind many common chronic illnesses, and while endometriosis isn’t in the disease rubric, dysmenorrhea (painful periods) is—and the rubric isn’t thought to be comprehensive. The fact that cannabis is able to interact with the endocannabinoid system to help fight symptoms is another sign that a negatively impacted ECS could be the cause of endo, but more research is needed.
Tamás Bíró, Professor and Director General of the Hungarian Center of Excellence for Molecular Medicine and Director of Applied Research for Phytecs told me via email that reaching optimal ECS tone (to balance endocannabinoid levels) is a balancing act of its own.
“The most important thing you can do to keep the ECS healthy is to avoid the extremes—to name a few examples: avoid extreme and chronic stress, avoid being overweight, control alcohol consumption, and try to curtail dependencies in general,” he said.
Though simply taking full-spectrum CBD may also help boost tone, all-in-all, getting a healthy ECS is all about living a healthy lifestyle. Other frequent advice on the matter entails eating right for your body (elimination diets are a great help here) and getting regular exercise. If that were the whole “cure” of endometriosis, we’d have a lot more cured patients out there. But, to this fighter anyways, it’s nice to know science might at least be close to the origin of this disease.
And in the meantime, at least there’s cannabis.
How cannabis helps ‘spoonies’ soothe the symptoms of chronic illness
By Meg Hartley
Published on May 17, 2019 • Last updated July 28, 2020
Medical cannabis is known for its ability to quell seizures, dull pain, and squash anxiety. It can also aid people with less well-known—but not uncommon—conditions, ones that often come with a life-long sentence. We call ourselves “spoonies.” In my case, fibromyalgia was the main force behind my conversion, but sadly there are a lot of ways to join the ranks.
The term was coined at a diner, when a lupus fighter named Christine Miserandino tried to explain the challenges of living life with the disease to a friend. Her friend knew the facts, but wanted to know what it felt like as an ongoing experience—as a lifestyle. Christine was a bit stunned: trying to sum up the limitations that affect every single aspect of your life is an overwhelming task.
Cannabis is a very common medical aid and ally to spoonies, offering soothing powers to all kinds of symptoms through the power of the body-wide endocannabinoid system.
She then grabbed a bunch of spoons from surrounding tables. She handed her friend the utensil bouquet, telling her that life with chronic illness is like only having so many spoons to get through the day—far fewer than the average person. If she borrows from tomorrow, she might be able to swing what she needs to get done today; but tomorrow has just as few spoons, so she’ll run a high risk of running out. And running out of spoons/overdoing it means big-time symptom flares and even less spoons. Maybe for weeks.
Christine asked her friend to go through her day, removing spoons appropriately as each activity demanded: getting up, showering, getting dressed, eating, etc. Half of her friend’s spoons were gone before she even left the house. Christine told her she had to decide what to miss out on in order to conserve spoons—run errands or make dinner? Wash the dishes or your hair? See a friend or catch up on work?
Her friend became sullen and asked how she possibly dealt with those limitations every day, forever.
A best friend to so many kinds of spoonies
Christine answered her friend’s serious question with a serious answer, and told her that spending her precious spoons chilling together was always a wise expenditure. Personally, I would have added: “And there’s no effing way I could do it without cannabis.” Though it can’t give me desperately needed spoons, cannabis makes getting through a regular spoon-starved day a whole lot more palatable—and a full-blown flare less horrific.
Cannabis is a very common medical aid and ally to spoonies, offering soothing powers to all kinds of symptoms through the power of the body-wide endocannabinoid system. We’ll touch on five conditions that can turn someone into a spoonie, as well as how cannabis is said to help treat symptoms.
In the disease fought by Christine, the body’s immune system becomes hyperactive and attacks normal, healthy tissues, and organs. It affects many different systems, resulting in many different symptoms. These may include extreme fatigue, headaches, painful and swollen joints, fever, anemia, confusion and memory loss, swelling, pain in the chest with deep breathing, hair loss, light sensitivity, abnormal blood clotting, ulcers, and more—including very serious issues like organ failure.
Science is extremely behind the ball when it comes to studying how cannabis can assist chronic illnesses, and the lupus community has not been served in this effort. However, there has been promising results in regard to cannabis aiding other diseases that affect the immune system and inflammatory response. Lupus is nicknamed “The Great Imitator” due to sharing symptoms with other diseases, and science has proven that cannabis aids in many of these shared symptoms. The next disease is one such example.
This is the bugger getting me down. Many kinds of physical pain are involved with this disease, whose cause is unknown. I could write a whole essay on the different kinds of pain, but instead I’ll share that when I broke (nay, shattered/comminuted fracture) my foot a while back I walked on it for ten days because it hurt less than the rest of my body, so I figured it was fine. Oops. And then there’s the mental confusion of “fibro fog,” fatigue, insomnia, and other fun stuff like depression and IBS symptoms.
My dear friend cannabis helps ease the pain, turning cutting shards of glass in my body into warm melty goo. It aids in lifting my spirit, which helps me push through the exhaustion, then gets me to eat through nausea. When I can do no more—when I become spoon-less—cannabis helps me emotionally handle the extreme amount of rest dictated by this advanced stage of the disease. And science backs me up here, with one fibromyalgia study showing so much improvement using cannabis that half of the participants quit their other medications completely.
Myalgic Encephalomyelitis (ME)
Referred to by some as chronic fatigue syndrome, ME causes severe exhaustion, a debilitating symptom that’s often minimized by culture and, deplorably, even by the medical community. The cause is unknown. Rest and sleep don’t improve overwhelming ME fatigue, and it worsens with physical and mental activity. Sufferers also battle headaches, poor memory, difficulty concentrating, dizziness, nausea, palpitations, insomnia, and sore throat or glands.
Unfortunately, science has not studied ME much in general, and not at all in relation to cannabis, but it has been recorded as anecdotally helpful by scientists. Another fibromyalgia study also showed improvement in many overlapping symptoms. Because of the sedative effects of certain cannabis strains, it’s said that using an energizing strain during the day can be crucial factor in improving symptoms of ME. Modest dosing can also prevent feelings of sluggishness.
Crohn’s disease and Colitis
Ulcerative colitis and Crohn’s disease are the two primary forms of inflammatory bowel disease (IBD). They are both characterized by chronic inflammation of the digestive tract, though colitis is limited to the colon and Crohn’s can occur throughout the digestive system. Both diseases can result in abdominal pain, severe diarrhea, rectal bleeding, fever, fatigue, nausea and vomiting, weight loss, anorexia, and malnutrition.
Cannabis can lend a hand in living life with colitis or Crohn’s. It’s often a qualifier in medical cannabis states, with patients using it to fight the full range of symptoms. Cannabis is an effective IBD aid largely because of its ability to reduce inflammation. A small-but-promising study on Crohn’s disease found that participants needed less surgery and reduced bowel movements while using cannabis, as well as drastically reduced need for other medicines.
A woman’s uterus has endometrial tissue that builds up throughout her hormone cycle, then breaks down and sheds—a never-particularly-fun process called menstruation. In endometriosis, this tissue grows outside of the womb, spreading itself on the fallopian tubes, ovaries, and other organs. When it’s time for the shedding of blood and other cells, they become painfully trapped in the body.
This problem can result in severe menstrual cramps, chronic lower-back, abdominal, and pelvic pain, painful intercourse, painful urination or bowel movements, IBS symptoms, and infertility. Traditional treatments (including risky surgeries) only try to keep the endometriosis from advancing, but cannabis has actually been shown to stop cell growth in mice as well as helping symptoms, especially pain.
We’re more common than culture regards
There’s many more ways to become a spoonie: Lyme disease, multiple sclerosis, Ehlers Danlos syndrome, or Hashimoto’s—all four (and potentially many more) may be aided by cannabis via the body’s widespread endocannabinoid system. It’s frustrating that science doesn’t understand these illnesses quite yet, regardless of the stunning amount of promise it shows in improving the lives of spoonies.
When you total the numbers of Americans estimated to be suffering from the eight diseases mentioned in this article, and there’s many more, you get 91.5 million—that’s about 27% of Americans. Though there is comorbidity to be factored in (people who have more than one of these diseases), there’s also millions still searching for a diagnosis, as well as many conditions that weren’t mentioned.
We’re talking about a lot of people suffering from conditions that are barely regarded by society here. A whole lot. And they are generally invisible illnesses, which adds another dimension to feeling ignored. It’s like we’re drowning a world of problems that only we can see. Hug your spoonies (and maybe smoke ‘em out), because you probably know at least a couple—whether you’re aware of it or not.
I Am A “Spoonie.” Here’s What I Wish More People Knew About Chronic Illness
MindBodyGreen, November 28, 2016
By Meg Hartley, mbg Contributor
Are you familiar with the Spoon Theory, or the term “spoonie”? If it sounds a little odd, hear me out.
It began when a young woman named Christine Miserandino explained to a friend what it was like to have lupus. They were chillin’ at a diner when the friend asked what it was like. Christine gathered all of the spoons from their table and a few more from others, then explained that when you have a chronic illness you only get so many “spoons” per day.
Every tiny thing uses up spoons: doing the dishes, showering, having feelings, getting dressed, ever-y-thing. When you use up all of your spoons for the day, you can borrow from tomorrow—but you will PAY, making tomorrow otherwise worthless, and probably the next day, too. (And if you incite a flare, weeks!)
Another factor for many spoonies is being homebound. I was a public-transportation-lovin’ Portlander, walking up my half-mile hill like it was no thang just a year and a half ago—but now that hill might as well be Everest. Other spoonies are homebound due to their conditions alone, lucky to manage even checking the mail.
Being a homebound spoonie isn’t fun. It’s actually super difficult. It also must be hard for our friends and acquaintances to know what it’s like, and hard for them to know how to help or what to do. Here are a few things that I want everyone to know about this sitch:
1. We rest up to see you.
Before I leave the house to the doctor, to see a friend, or anything—I have to lie around for two days to gather my spoons, if you will. I learned this the hard way: by being in public when level “too much to physically function” creeps up. Now I rest up. This is something to be mindful of when making plans with a spoonie.
2. We recover from seeing you.
For two days after I run errands or socialize, I have to recover. I’m currently at a health stage where those things take up all of my spoons, and I have to pay the price for it. (To my homies—it’s totally worth it!)
On the few days a month I’m actually able to leave the house, it’s not uncommon to hear, “But you look and seem great! Are you sure you’re so sick?” It seems innocuous, but most of us spoonies have had to try to convince people that we are physically unwell for years, and a comment like that can really stir up the feels.
3. Getting my diagnosis took years, and I was accused of faking it many times.
It’s hard to express just how difficult that was. When your body isn’t working and no one can tell you why, let alone how to fix it, it’s the most powerless feeling on earth, but then to have to try to prove that you’re suffering—it was profoundly deflating.
I’ve also found that when I act like I’m feeling better than I am I can actually distract myself from the symptoms for a bit and get some shit done. If I have to get through a doctor’s appointment and grocery shopping when it feels impossible, staring at the good stuff and forcing myself to engage in a little chitchat is really helpful. It’s kind of a “fake it till you make it” approach, and I’ve gathered that it’s a common one. But we’re putting on a face to cope—it’s harder than we make it look.
4. It’s a big financial stress.
Figuring out how to make money when you can’t leave the house, or even function much of the time, is incredibly difficult. It’s taken me 11 months, and I still don’t have a consistent income put together. (Thinking about how chronically ill parents possibly deal with this, man, I can’t even…)
It’s been a whole lot of hustling for gigs that can be done at any hour from anyplace (whenever my body allows, and from home), and those are really coveted freakin’ gigs because who doesn’t want that kind of vocational freedom? If you know someone in a situation like this, money is likely to be an issue in their lives, especially if they’re just learning how to cope and in a world of medical obligations.
My friends, family, and the badass community that I grew up in gathered together this winter and raised enough money to get me through the scariest part of my life. I can’t even begin to express how much gratitude I have to everyone who’s helped me this year, I look forward to finding actions, because words just won’t suffice.
5. If we ask for help—we’re desperate.
Obviously everyone’s different, and some people have no trouble asking for help and/or have a badass support network that doesn’t require them to. Others struggle with feeling worthlessly small when they have to ask for help, and they only have a few close friends in their new-ish city…. (Hey yo.)
I’ve gotten the impression that sometimes people feel like they want to do a good thing and so they offer to help or say yes when asked, but they don’t fully consider whether they really want or are able to, and so wind up bailing.
It’s a really lovely intention, but the thing is when people offer to help and then bail at the last minute—we’re screwed. Like as in no food, or no medicine, actual, in really real ways. So please don’t offer or say yes to someone in this situation unless you can definitely follow through.
6. Offering help is amazeballs.
When people let me forgo the asking for help part by asking what they can do to help—man oh man, is that just spectacular. I could use help pretty much all of the time. I usually just buckle down and figure out a way to do it on my own, which can get dicey. When someone steps in and they’re like, chill, I got this, it’s just the best. My neighbor sometimes calls from the grocery store to see if I need anything while he’s there, and it just makes my day. Small things go a long way in this sitch!
7. We get really enthused about small things.
When I finally get to leave the house I’m like a child, staring at my beloved city with new eyes, pointing out all of the awesome everywhere. I’ve gathered from medical ride providers that I appear a bit silly when I do this, but who cares? The world outside my apartment is currently precious and fleeting, and when I get to play in it—I PLAY in it.
8. But sometimes we need to cry our eyeballs out.
I have a family friend who’s become wonderfully close over the last six months. She’s someone who knows how to hold space, to listen with empathy and without judgment. I know my words won’t escape from her mouth to others’ ears. Being able to call her and let those feels out has truly been a lifesaver.
Samesies for others who’ve seen me at my absolute worst, my most desperate, and yet still come ’round all full of acceptance and kind words. They make me feel safe. Like I’ll make it. It’s so precious. When human contact is rare, the desire to try to make it a wholly positive experience can be overwhelming, so providing a spoonie with a safe space to release the bad feels is an ENORMOUS help.
9. A text message is not a phone call.
This winter I went over two months without hearing the voice of a beloved human. I’d call people, but they’d text back. I used to be the same way—I totally get it—so I didn’t want to pester anyone, but it was desperately lonely. (Yet my Facebook was blowing up! It’s a strange world we’ve made ourselves here.)
10. But a text message is better than nothing.
So many people from all over have been checking in on me throughout this journey, and it’s meant the world. I remember how crazy life is out there, and it’s heartwarming to know I’m thought of and that they took the time to express it.
11. Because sometimes it feels like we could just disappear.
When you’re alone so often, and especially during stretches like in No. 6, it feels like you’ve already vanished—and the world’s just fine without you. It can feel like you don’t matter. I’ve learned to create some semblance of community, and that’s helped lots, but those feels still haven’t quite gone away.
So love on your spoonies, people. This is hard. It’s harder than we make it look, and we’ll probably never actually divulge just how hard it is. (Health issues are often embarrassing.) Before all of this, I remember sometimes whining about not having something I wanted, then rolling my eyes and sarcastically saying, “At least I have my health”—like it didn’t even count.
“Resting Niceface” Made My Invisible Illness Go Undiagnosed For 25 Years
I smile a lot. Not because it’s my favorite, though I certainly don’t mind, but because my face just does that.
By MEG HARTLEY
Yesterday, I went to a doctor’s office that I hadn’t been to in months.
“How’s it going?” I asked the woman checking me in.
“I remember you!” She replied. “You were this nice last time as well. It’s so good to see you again!” She seemed genuinely relieved by something I had done, but all that happened was a normal greeting.
Strangers frequently overshare with me and then say, “I don’t know why I told you that!” I regularly get stopped in stores because people think I work there. I am trusted with the belongings of random people. All of my roommates wind up calling their pets “traitors” after I move in. Children tend to adore me, even when I’m annoyed at their presence. Everyone thinks I have a crush on them.
Like Buddy in Elf, Hank Hooper in 30 Rock, and all blonde women in Bechdel-failing movies, I have Resting Niceface, the opposite of the more well-known Resting Bitchface. It’s generally an awesome thing to have. People smile back, for one thing — that whole sugar/vinegar thing is true! Men rarely demand I smile because it’s already sitting there on my face. People are usually comfortable with me. I get lots of hugs.
But my Resting Niceface also causes confusion. Acquaintances are often taken aback when I don’t smile. People also sometimes don’t listen to my words. More than once I’ve expressed concern about something and had people actually respond like I’d said something positive. A couple of guys have been bewildered when I broke up with them — even after I repeatedly told them I was pissed and felt like I wasn’t being taken seriously.
So I ignored cysts large enough to debilitate, unusual reactions to pretty standard intoxicants, and bouts of pretty severe depression. After I’d recovered from whatever had me down, the problems felt like pretty small things. I mean, I got better, right? And everyone else thought I was fine, so I figured that they must have been through something similar and that these things were normal.
This phenomenon has also played a significant role in why I was just recently, at the age of 33, diagnosed with an “invisible illness” that I likely started showing symptoms of when I was eight. I vaguely remember asking a pediatrician what was wrong then after a test for ulcers came up negative. He looked at me as if he could assess my diagnosis from a glance at my face and said, “Oh, probably nothing. You’ll be fine.”
At least as a kid and teenager, my parents took me to a doctor when symptoms popped up, garnering misdiagnoses of asthma, hypoglycemia, and a trauma-induced mental break. But out on my own, I turned to friends with my symptoms. They assessed me much like that doctor, looking at my face and saying, “I’m sure you’re fine.”
So I ignored cysts large enough to debilitate, unusual reactions to pretty standard intoxicants, and bouts of severe depression. After I’d recovered from whatever had me down, the problems felt like pretty small things. I mean, I got better, right? And everyone else thought I was okay, so I figured that they must have been through something similar and that these things were normal.
My symptoms morphed over the years, transforming into what looked like a frequent flu in my late 20s. I’d show up at work after taking time off, feeling miserable but apparently looking just fine. Several bosses accused me of faking it, and I lost two jobs due to their suspicions. (Others called me a trooper and told me they appreciated my positivity. It’s a matter of perspective, I guess.) Doctors told me it wasn’t the flu, but most of them too were “sure I was fine.”
I’d reason away the symptoms, chalking them up to my lifestyle choices or telling myself I was just being a baby. I convinced myself it was just a super-duper frequent flu. I told myself that dizziness was very common and forgetting your close friends’ names was normal — just a brain fart! I figured that physical activity was simply not my forte, that some people don’t like moving — ignoring that I was once a competitive athlete. I figured that I was just clumsy and that’s why I was constantly dropping things and tripping — ignoring that my sport had been gymnastics. I decided that I was just allergic to everything, and that’s why I had random rashes and swelling. I blamed sporadic but extreme irritability on both birth control and obnoxious people.
For a long time, it was easy to believe I was fine.
So I groggily adjusted to the new normals, to new mysterious pains, to new frequent low fevers, to new levels of confusion. It wasn’t until about a year and a half before I became homebound ill that “agreeing I was probably fine” turned into straight-up denial.
The flu-like symptoms, extreme tenderness, debilitating fatigue, and tear-inducing “aches” started crashing in on me most nights, accompanied by a tingly pain. I turned into a dreadfully flaky person, canceling on people at the last minute due to my health. Then I stopped making plans altogether. And not long after that, I had to stop working too.
Throughout, my Niceface kept confusing doctors and assuring folks when it needed to be conveying urgency to them.
Eventually, after nearly 30 years, I finally got a diagnosis. Methylenetetrahydrofolate reductase mutation, or MTHFR for short, is a relatively common genetic mutation that is often innocuous — but some types of mutations are more health-adverse. It can lead to heart troubles, infertility, autoimmune disorders, and other kinds of disease. For me, the manifestation was a severe B12 deficiency — nearly low enough to kill or paralyze me.
A year and a half of tests after the B12 revelation, I was also diagnosed with fibromyalgia, another disease of the nervous system. With the help of a complete diet change, gradually increasing exercise, a move to a hotter drier climate, and many other efforts, I’ve made a stunning recovery. I went from being on near-complete bedrest to now working a part-time job and freelancing on my days off.
I’m still a long way from where I’d like to be. Very tiny amounts of activity still exhaust me. I have absolutely no social life; I work, I rest, and that’s about it. I still have talking troubles from time to time, suddenly getting slurry and confused. But I’ve come so far, especially since getting diagnosed. And maybe it’s just the optimistic personality that so often comes hand-in-hand with Resting Niceface, but I bet I’ll make a total and complete recovery.
Why People With Chronic Illness Fake Being Healthy
Faking health is a common coping mechanism for someone with chronic illness.
By MEG HARTLEY
Those of us suffering from chronic, invisible illnesses are often told, “but you don’t look sick.”
This sentence could be interpreted as a compliment, but the tone in which it’s delivered is rarely complimentary. It usually sounds more like an accusation, like we’re faking it or being wimpy. And I get it — we already look pretty normal (though likely unshowered and a bit dazed). Smiling, chatting about anything but our bodily agony — it’s confusing for people on the outside.
Faking health is a common coping mechanism for someone with chronic illness.
I’d like to shed some light on the motivation for this very misunderstood behavior.
1. We Can’t Talk About Our Illnesses All Damn Day.
If I answered “how are you?” with a list of all of the types of physical pain I’m in and other symptoms, I’d never get anything done. Being ill takes up enough of my life — hearing about your hot date or blabbing about finally getting into Six Feet Under is just more fun. Plus, distraction is good. Talking about illness can make someone more aware of their symptoms.
2. To Trick People Into Thinking We’re Competent.
Many of us start doing the whole “healthy person” bit to keep jobs and meet other responsibilities, especially social ones. If we reveal the gravity of what’s going on healthwise, it’s likely to result in others thinking that we can’t handle whatever is on our plate.
3. People Tend To See Us During “Good Hours.”
The pieces of time in a spoonie’s life where they’re rested enough to see other humans is truly time to be treasured. Those golden moments are precious and ought to be savored, which is likely to result in a smile, an expression can be misinterpreted as “nothing’s wrong.”
4. To Cheer Ourselves Up.
Like many, but certainly not all spoonies, I’m a smiler. I’ve always been a smiler, even when it hurts so badly I want to cry. Like many dealing with chronic illness, I consciously work on and for my happiness — and the result is often a smile. You just can’t let pain steal your happiness.
On really crummy days, my smile is 100% faux. I fake it because the world smiles (or scowls) back. And having people return miserable glances is unpleasant. The life of a spoonie can be very isolating, and a day with a few pleasant human interactions can help get one through a long and lonely night of painsomnia — trying to sleep through the pain and failing miserably.
So when you encounter someone with chronic illness and they “don’t look sick,” please just be happy for them! Take advantage of seeing this warrior while they are feeling themselves and not lost in a world of medical chicanery. Remember that seeing a positive expression on a spoonie means that they are strong and trying to get as much out of their day as they possibly can — despite fighting a battle a healthy person can’t even imagine.
Chronic Illness Gets Even Worse in the Winter: Here’s How You Can Help
Southeast Living, 2018
By Meg Hartley
Do you remember the last awful flu you had? How hard, or even impossible, it was to do your day-to-day activities? Folks with chronic illness deal with that level of inability and discomfort every day, sometimes all day long. The ways one can become incapacitated like this are many. From multiple sclerosis to fibromyalgia, myalgic encephalomyelitis (chronic fatigue) to arthritis – and the miserable world between, there’s a whole lot of people out there who are having a hard time with daily basic tasks.
10,000 KNIVES WHEN ALL YOU NEED IS A SPOON
A lupus fighter named Christine Miserandino created a now-popular spoon metaphor to describe living with these limits. It all began when she was eating at a diner and a friend asked what it was like. To answer, Christine gathered all of the spoons from their table and a few more from others; then explained that when you have a chronic illness you only get so many “spoons” to get through each day. Every tiny thing uses up spoons: showering, getting dressed, having feelings, doing the dishes, everything. (Even thinking! This spoonie writer uses up most of her spoons just sitting at a computer many days.)
When you use up all of today’s spoons, you can borrow from the next – but since tomorrow is just as spoon-limited, doing so will leave you with even less spoons to get through the day. If you go spoon-negative you’re likely to cause a flare: an exponential increase in symptoms, which can last for weeks. And, to compound matters, changes in barometric pressure can make things like rain, wind, cold temperatures, snow, and even clouds cause flares; making the person that might have been able to meet you for dinner a few days ago, completely and utterly debilitated today.
IT’S NOT EASY TO BE AN ALASKAN SPOONIE
Suffice to say, winter in Southeast Alaska brings an incredibly challenging time for most with chronic illness, or “spoonies.” Many are even homebound. Here’s a few ways to help your spoonie friends during this tricky time of year:
SNOW. Think of that miserable flu again. What do you think would have happened if you forced yourself to shovel snow in that condition? With a regular flu, you’d probably stay sick a bit longer. But for a desperate spoonie, doing so will likely cause a flare. When you’re already dealing with such intense symptoms, it’s hard to describe just how horrific a further increase is. If you’re able to help a spoonie shovel, or to just do it for them – you’re a true hero. Same for salting, taking care of stabby icicles, and all of the other fun our Southeast winters bring.
Let’s be honest, your spoonie hasn’t even been able to shower in days, let alone do laundry or dishes. (Vacuuming? Haha. You’re funny.) Standing things are hard. And cleaning tends to require standing. Plus, cleaning one’s house does nothing to pay its rent or mortgage, and when you’ve only got so many spoons per day – one must prioritize. Lending a hand means the world.
Who doesn’t love a hot cuppa soup or other nourishing treat when you don’t feel good? This doesn’t change when you’re sick all the friggin’ time. When faced with the task of cooking – standing for an extended period of time – many spoonies choose to eat conve-nient-but-unhealthy meals, or forego the meal completely. (Want to help, but don’t want to face the elements even in your healthy bod? Think about sending over a delivery meal, or even groceries with Instacart.) Be sure to ask about allergens as they’re common in spoonies!
Being chronically ill is incredibly isolating. The world keeps spinning after you’re forced into a sickbed, and it can feel like it’s forgotten all about you. So if you think of your spoonie, tell them. Arrange a visit if they’re up for it. And if that’s not doable, try to call over messaging. Typing out how one feels isn’t particularly soothing. (It’s likely they won’t have energy to talk for long anyways. C’mon, go retro.)
The ways your spoonie needs help are many, but they aren’t likely to share that information with you. When presented with the rare gift of human interaction, many of us would rather talk about anything but our stupid needs and diseases. (Though sometimes it’s all one can talk about, so please use patience and empathy in those cases…) Asking how you can help in an open-ended way, rather than offering something specific and withdrawing when it’s not needed – can be a real life-saver.
Alaska winters are hard on us all, but it dealing with crippling disease on top of it is straight-up dangerous. Just being there for your spoonies, especially this time of year, really means the world. Even if all you can offer is a text or a hug – please, get that texty hug on.
How a vitamin deficiency nearly paralyzed me
SheKnows, JULY 21, 2016 AT 8:00AM AM EDT
by MEG HARTLEY
This fall, after a lifetime of odd health experiences, I became too sick to do literally anything. Lifting up a book to read or my phone to scroll was too painful for my arms. Sound frequently and intensely irritated me, making binge-watching out of the question. Every time I stood up, blackness would cloud my vision, and I’d be sure I was going to faint. Once I was up and the darkness lifted, I couldn’t walk right. My legs were too weak, and it felt like something was tugging hard on my nervous system, pulling it upward like I was a marionette.
I thought I was dying — and I kind of was. Without a diagnosis, I would have died. I had a total of 33 miserable-making symptoms.
It came on slow. It was tiny aspects of my experience — a cyst here, a rash there. Or other random things, like being clumsy and having to pee all the time. Sometimes it was bigger things, like a mental break or endometriosis symptoms. There were also the ever-increasing changes in my demeanor and level of energy and an electric pain that started as innocuous pins and needles.
I didn’t want to admit something was wrong. So for a while, it was easy to pretend I was fine, but it turns out I’ve been ill for a very, very long time. It’s hard to say exactly how long. I can’t go back in time to give a 10-year-old me with ulcer symptoms a blood test, but that period of pain went unexplained and was consistent with what’s made me so sick now: vitamin B-12 deficiency, of all things.
My symptoms have progressed to funicular myelosis, which is the combined degeneration of the spinal cord. It’s probable that without treatment I would have been paralyzed by now. MRI scans revealed that my brain looks much older than it should, with white foci sitting where they ought not. And six months into treatment, I still can’t walk more than a few minutes without dire punishment.
And because of a vitamin. A vitamin. It’s fucking nuts.
So why wasn’t I tested before the age of 33? Why didn’t they figure it out before it got so bad? I’ll leave out big pharma’s role and pin it two big things: misdiagnoses and misconceptions. Vitamin B-12 deficiency mimics many other diseases, and it can look like almost anything, making misdiagnoses rampant.
Doctors have also been taught to consider serious B-12 deficiency an old person’s disease. When people get older, their stomach often stops working right, and they can no longer absorb B-12 through foods, eventually creating a deficiency and an array of symptoms. Although that’s when it’s caught most often, it can happen at any age.
Another misconception is that because B-12 is only found in animal products, only vegans and vegetarians need to worry about it. Nope. In addition to stomach problems, which are created by many things such as surgery or autoimmune disorders, it’s possible to become deficient even if your intake is sufficient. It can also come from a very common genetic mutation called methylenetetrahydrofolate reductase, or MTHFR for short. (Apt, isn’t it?)
That MTHFR of a reason is mine. My prognosis is good; treatment is simply B-12. I’m getting better, oh-so-verrrry slowly but surely. Most of the random symptoms have vanished, which is wonderful. The biggie now is the electric pain; I feel like I’m being electrocuted most of the time. That and if I move too much (barely at all), I lose the ability to walk.
I’ve had a lot of time to reflect. It’s a strange thing to discover that you’ve been sick most of your life and you didn’t even know it. There are so many little symptoms that I thought were personality quirks, like excessive sighing (shortness of breath), getting confused or being lazy (weakness and low energy).
I look forward to a new shot at life. In my daydreams, I regain levels of health I once knew as a competitive dancer, and life is imbued with a level of vitality I haven’t known as an adult. Everything is easier, and I feel like a super-me, able to hike up mountains and actually consider it to be fun. I travel the world and explore ancient ruins without ever saying, “I’m tired.” Ah. Let’s hope.
And as for you, I recommend that if you have any, and I mean A-N-Y, unexplained ailments (including mental illness and infertility) you get your B-12 levels tested. Early B-12 deficiency can look like almost anything, as it affects the nervous system, which is part of everything. Also, find out if you’re a MTHFR, and take the appropriate precautions. It might seem like a pain in the ass, but just do it. Trust me.
What I learned after 10 months of being sick and stuck in my apartment
SheKnows, AUGUST 4, 2016 AT 8:00AM AM EDT
by MEG HARTLEY
What’s the longest you’ve ever been alone? Last fall, I was diagnosed with an illness that had progressed to the point of absolute debilitation, and I’ve been homebound for the last 10 months. As a result, the longest I’ve been totally alone is around five weeks straight, with about seven brief interruptions by grocery delivery drivers — who’d wind up inching back from me as I babbled away about anything, anything at all.
I’m recovering from severe B12 deficiency, which destroys the protective myelin sheath around my nerves, brain, and spinal cord. This process causes damage all over the body, but the most pertinent symptom here is trouble walking. On bad-ish days, I walk like a pregnant robot, my movements stiff and my legs bowed out.
I live alone at the bottom of a condo complex that slopes down into a gorgeous tree-covered canyon. Peaceful? Oh my goodness, so yes. But also completely inescapable since I can’t drive. The renowned transit was a big reason I moved to Portland, but my bus stop lies at the top of that big ole hill. It might as well be Everest.
More: How a vitamin deficiency nearly paralyzed me
My close local friends are mighty in quality, but very few in quantity — and they have busy lives of their own. I was also in so much pain this winter that I usually didn’t want to see anyone. It just hurt too bad, and I just didn’t have the energy.
Things have been improving lately. I’ve been “able to people” about 15 percent of the time. (Woo!) But since that hill became my peaceful prison nearly a year ago, I’ve been alone more like 95 percent of the time.
It was really difficult. There’s no need to tiptoe around that. Some days I felt abandoned, and rational or not, it felt like I had no one at all — like I had disappeared and the world was just fine and dandy without me. (I’ve definitely decided to put down some real roots when I get out of here.) It was one of the darkest times of my life, and on some days, I honestly didn’t know if I’d get out the other side.
But as I get further away from the dark times, it’s becoming clear that this experience has actually been wildly beneficial. Facing darkness brings truth, and has helped me to see more clearly. I was able to really think about what I want from life and relationships. I made some really solid goals, and I was able to gain a healthier perspective on my past. (Plus, I finally got to grow my eyebrows out to find my “natural arch” sans anyone seeing the furry stage, huzzah.)
Another fun result of all this alone time is a definite increase in silliness. I’m singing at the top of my lungs, I’m talking to myself, giving self-fives (which I realize I stole from Liz Lemon), I’m writing without censor, I’m tanning in my underwear — I’ve actually had some really good days!
But the biggest aspect of it all has been reflection. I’m a spiritual person, a meditator, a writer. I like to reflect. You could even call it a hobby, but this was fucking intense. During the worst times, I was lucky to sit upright for an hour. Sound often irritated me intensely, and I was in too much pain and too weak to even hold up a book. Very literally all I could do was think. (And I took up bird-watching. I’m going to keep it.)
At some point in all the reflection, I realized that I’ve often bounced off of everyone in my life instead of moving from my own center. Other people’s reactions, and more specifically, my fear of them, had taken over my interactions, creating a distance between me and everyone in my life. I saw how this affected my relationships, and I wondered if others struggled with their own version of a similar problem. I mused on the façades we all wear.
Then I wrote a book about it. And I even found an agent, a good one. We’ll see what happens with it all, but I’ve never felt closer to having a work life that satisfies me. My relationships have become much more authentic (for better or worse), and I feel more connected to myself than I ever have.
I don’t recommend that anyone spend 10 months alone in their apartment by choice. It’s not as spectacular as that — but it’s really made me see the value in developing comfort with being alone. I feel like I’m gonna be a force when I finally bust out of here, and it’s exciting indeed.
How I Realized There Is No Shame in Being Ill
I knew something was seriously wrong the day I could no longer hold up a book on my bus commute. I had routinely been getting sick for years prior, first a few times a year, then doubling over the next few. By the time I started enduring bookless bus rides I was falling ill with what I thought was the flu near monthly.
I became weak and movement started to hurt my muscles. My brain felt like it was filled with cotton. My body became tender to the touch, hurting wherever it held weight. I was so confused when my booty started hurting all the time (from sitting)… I laughed that one off, but at night – when my memory foam felt like concrete and the usual electric pain skyrocketed – it wasn’t something I could stretch into amusing. By the time I started to get answers, I was so sick I was lucky to spend more than a handful of hours vertical a week, an array of other symptoms constantly plaguing me.
I kept it a secret as much as I could for as long as I could. I suppose I thought it was my fault, somehow. At first, I thought that I just had a lowered immune system due to my then great love of beer… even though it didn’t really make sense. Shame makes people do and think stupid shit, it really does.
I had been heading right to bed after work (when I could make it) nearly everyday for about two years before I became homebound. By then I had broken my daily after work beer habit, despite its pain-smashing effects, but continued to fall ill, and with greater frequency. Still, I kept it to myself, faking it as best as I could. It was so gradual. It was also totally invisible back then and I’m naturally a smiler, I pulled off “healthy” most of the time, I think. Faking it also distracted me from the cacophony of symptoms, making it easier to cope.
My friends probably thought I became aloof and flaky. I had taken to never saying anyone’s name so I wouldn’t mix it up or plain forget. I stopped making plans after blaming introversion for bailing at the last minute too many times. I’d reach out on the rare good day and sometimes get lucky, or make a plan at my house (no commute) with alcohol involved, so I could function despite the pain, but I was mostly alone long before I was trapped inside my apartment with no way out.
I started temping around the time I lost my treasured social life. At first it was because I just needed work in my new city of Portland, Oregon; but then I realized that I couldn’t get fired for missing too much work if I switched jobs frequently, as one does in temping. The temping probably didn’t help the shame, being at the bottom of the totem pole for the first time in my adult life. (And at age 30 to salt the wound.)
My first job out of college was a good one, boosted by a big promotion just six months after. And then the recession hit. The office I was a manager at shut down over several weeks, groups leaving the office in tears every few days or so, with us managers leaving last. In addition to trouble from missing too much work, I’d lose two more jobs due to mass layoffs or closures in the next five years – something that created stress, which I’d later learn contributed to the severity of my condition.
The day I realized that I really needed to use my walker on a regular basis, I screamed at a medical ride transport driver to, “Fucking stop the car right now!!” It was an act that startled us both. He had refused to stop at the grocery store by my house, something that had been planned with the company he worked for. I’d even double-checked because I had a bad feeling about it. I had absolutely no budget for a cab and no way to get to the store from my apartment at the bottom of a half-mile hill.
I got out of the car at the top and slammed the door behind me, quickly realizing that my knees were buckling again. By the end of the two minute walk to the store, I was crying from the pain and walking like I was 15 months pregnant with triplets, grabbing onto anything I could to hold me up. But I still didn’t use my walker routinely. Shame.
The day I actually started using it also featured a medical ride driver fight. He had shown up an hour late and then lied to me about it. My symptoms had shot through the roof in that hour waiting outside the doctor’s office, and my legs weren’t holding my weight at all. He at least got me to my pharmacy/grocery stop, and even offered to help – but I was too mad to accept his offer.
So, brilliantly, I tried to fling myself from the car to a nearby grocery cart, or makeshift walker. I pushed against the door with all my might but caught my thumb in the handle, unexpectedly on the side of the door, smashing it real good and immediately changing the skin and nail to purple-black. I fell to the ground, unable to get up on my own. It was a bad day.
I had a book in my hand and new information about a shared genetic mutation in my head the day I realized that I was suffering from the same thing that led to my mother’s death. I couldn’t get the 19-year-old memories of her screaming, “My nerves are shot!” out of my head. How she complained that she couldn’t think straight, even buying tapes to help her failing memory. How she always needed to lay down, saying she was just resting her eyes, but getting tearful when she couldn’t sleep over our noise. How she internalized it all, always feeling guilty for having such a hard time. I believe shame killed her.
I first realized that we shared mental illnesses when I was 19, after a year of intense depression concluded with a mental break. I optimistically attributed the latter to having done shrooms right before, but the fierce storm in my head scared me with its darkness and frequency. The mental break – or spiritual awakening if you asked my philosophy professor – was like a dream, a really good one. But, from the outside, I just went around my small hometown acting like I was a bit odd for five days.
Though I was deeply embarrassed about the event, the storms of depression didn’t come back until about eight years later, a year of job-hunting after that first layoff. The episodes increased over time, keeping pace with my ailing body. Of course, this was also something that I kept to myself, so much shame. I used meditation and mindfulness to keep the depression at bay, but it knows how to sneak-attack me – usually triggered by outside events, though sometimes tiny and not always.
The day I really did something about it was the same day I did something about the shame. It was spring of 2017 when I called 911 for fear of my life. I had gotten seriously horrible news and couldn’t stop thinking about the ways I could leave this life. My apartment suddenly seemed all scissors and pills and high balcony drops. After a terrifying night alone in the ER I was moved to the mental ward, and for the first time, I didn’t keep the depressive episode to myself.
I finally took advice from my writing (we seem to always teach the things we need to learn, eh?) and stopped caring about how others might judge me. This was too important. Too common. Too hidden. Mental health illnesses had already taken my mother, I couldn’t let it fester inside me anymore. I also hoped sharing my story might help someone else feel empowered to get help. I spilled my guts on social media that day, finally sharing about the mental struggle that had tortured me for so long. People were kind and supportive, several reaching out to me with empathy derived from their own challenges. Shame is silly.
The first day I finally shared my physical torture was the day I received my first accurate diagnosis: B12 deficiency, likely starting from birth. (A. Fucking. Vitamin.) I received the second just last month, after all other possibilities had been ruled out: fibromyalgia. A disease without a cure, whose cause isn’t known. However, there’s lots of anecdotal evidence for lifestyle cures; I’ve been eating a clean diet for a couple years, but I’m going to do even further diet changes. Luckily I haven’t been eating my feelings as much since shaking off the shame monkey – a fabulous diet trick that should make this cleanse easier than the last.
I’m frustrated by the potential healing possibilities that I just can’t do right now, like exercising my way through the pain as many people say they’ve done. That’s likely to send me into a flu-like flare that can last for weeks, where all I can do I lay down. They’re positively maddening. I’d give it a shot anyway, but how would I get anything done? My finances are already beyond a wreck and I need to get to the doctor, to get groceries… how do people do it?
I’m not without hope though. In fact, I’m convinced that I’m going to get better. I imagine myself running into the ocean at full speed and diving in, or doing gymnastics again, or hiking up an ancient pyramid; it feels so real. Positive thought isn’t nothing! As for the B12 deficiency damage, I’m taking low-dose Naltrexone, which is said to instigate healing – so let’s hope, send juju. I also now have emergency pills for the depression and have finally found a great therapist. I’m going to be OK.
However, I wonder what would have happened if I was assertive about needing help six years ago. (I’d still be able to walk reliably, that’s for sure.) I hope today is the day that you do something about a symptom of yours, be it physical or mental. Please don’t reason these things away or sweep them under the proverbial rug. It’s so easy to overlook the importance of health when it’s mostly good, but these things can take over your world before you know it. There’s no shame in illness, and there’s no shame in getting help.
What’s next for psychedelic decriminalization?
Published on March 4, 2020 • Last updated July 28, 2020
There’s a fast-expanding movement that aims to help people with PTSD, mood disorders, substance-use disorders, chronic pain, cluster headache, psychological distress associated with life-threatening illness, and more.
The movement to decriminalize entheogenic plants—psychedelics—is young, but has already succeeded in three cities, with many more in the works. The force behind this tide is an organization called Decriminalize Nature (DN), who uses an open-source format to help communities all over the world start healing.
They’ve already led the charge to success in Denver, CO, and Oakland, CA, and last month Santa Cruz, CA, joined in as well. We talked to two of the founders to get a feel for the motivating forces of the movement, how it’s different from the cannabis legalization movement, and what’s next on the agenda.
Denver, Oakland, and Santa Cruz decriminalize
Let’s take a look at what the Decriminalize Nature (DN) team has already done. Denver was the first city to take the leap, passing Initiative 301 in May of last year, which prohibits the city from “spending resources to imposing criminal penalties” on adults 21 and over for use and possession of psilocybin mushrooms, and moves imposing penalties to “the city’s lowest law-enforcement priority.”
Oakland was up the next month, decriminalizing entheogenic plants in general, which includes mushrooms and a full spectrum of entheogenic plants—psychedelics like iboga, ayahuasca, and cacti (similar to peyote), as well as others. It relegates the enforcement of laws imposing criminal penalties for growing, using, or possessing entheogenic plants by adults as “amongst the lowest law enforcement priority for the City of Oakland.”
And in January 2020, Santa Cruz joined the party, unanimously ruling to make the personal possession and use of entheogenic plants and fungi a low priority for law enforcement.
Santa Cruz mayor Justin Cummings told Leafly via email: “The decriminalization of these plants and fungi is an opportunity to allow members of our community who benefit mentally, physically, and spiritually from these substances to live without persecution by our local law enforcement.” He also noted the powerful therapy potential and importance of further research.
You may have noticed that none of these resolutions mention anything about moving toward the sale, regulation, or distribution of these plants. This is quite intentional—instead of a traditional marketplace, DN’s vision for entheogenic plants is centered around community, and they hope to avoid many of the present-day challenges with the legalization of cannabis.
The philosophy behind the movement
Carlos Plazola, Decriminalize Nature’s Co-Founder, Chair, and National Co-Lead, said the model for creating a structure for the commodification of goods is “driven either by creating taxation to pay for service, or they’re driven by folks who are interested in profiting.”
Believing that entheogens should be legal and the exchange of them regulated, DN reverses the profit model completely: “Our process is really a bottom-up process that is focusing on compassion and healing as the main objective; a mission, so to speak,” said Plazola. “We encourage people to grow their own, gather their own, gift their own, and to build community that way as well. In a perfect world, there will be no such thing as a black market.”
He stresses the personal nature of consuming entheogens: “Do you want to do it in a church, under a spiritual type of ceremony? Want to do it with an indegenous healer? You know, are you coming out of prison and you want to get restorative justice centers to offer you healing services? Are you going through a 12-step program and you need to do alcoholic recovery?”
The movement’s gaining momentum
When asked if there has been any pushback, Plazola noted, “Because it’s about healing, not about profit or taxation, people are really receptive. It turns out that everybody wants the community to heal. We’re suffering from severe mental health problems and a shortage of services for people, and so this could be a solution. City leaders are pretty supportive.”
And that’s just the beginning. Larry Norris, ND’s Co-Founder, board member, and National Co-Lead, said the next city they’re focusing on is Berkeley. “Hopefully within the next few months, we’ll have a final vote,” he said. “Chicago could be having their final vote soon.”
And the surge continues: “I know that there are a lot of other cities that are working on this—Hallandale Beach, Florida, has already talked to the city council, Seattle’s making some good moves, in Spokane there’s a ballot initiative. It’s happening. Portland has a ballot initiative,” said Norris. There’s also a movement in Washington, DC, proposed by a woman who healed her postpartum depression using psychedelics.
Norris explained that there are about 15-20 cities actively engaged, with many more working to get there. Each city does things a little differently, such as Dallas, Texas, which added cannabis to their resolution, and Chicago emphasized the need to combat the opiate crisis. The DN movement has even gone global—there are folks reaching out from Ireland, Chile, Germany, and the Netherlands, and even Russia downloaded a DN graphics package.
DN offers their resources in an open-source format, meaning people will be given free materials to enable them to essentially just change paperwork to their city’s name. They also offer webinars at least monthly to answer questions about the decriminalization process, as well as private Facebook groups and a Slack channel. All of their graphics are available for free, giving organizers tools to help new DN chapters build a community.
“We’re really trying to empower the people to engage with their city council members, to be involved in democratic process, to really stand up for what’s helped them and heal them,” said Norris.
Plants with purpose
While these plants have great potential for healing several mental health issues—and the research holds up—Norris said that some people are anxious about doing them under the observation of a traditional therapist. To address the need for experienced guidance and support, they have a nonprofit called Entheogenic Research, Integration, and Education (ERIE), of which Norris is the Executive Director.
ERIE provides educational support to the movement and organizes community “integration circles” where people can come together and share their often transformational stories. Norris said not all therapeutic forms of taking entheogenic plants need to involve traditional therapy, but can also include “approaches and services that aren’t therapy, but are therapeutic.”
Norris hopes for a future that includes community gardens that grow entheogens. “We need the biodiversity, there’s all this concrete everywhere,” he said, adding that the movement presents an “opportunity to engage with planting and connecting with nature.”
He also mused on the potential for intergenerational and intercultural dialogues—with elders helping young people to navigate these plants, like many cultures around the world do in rite of passage ceremonies.
“We’re talking about a relationship that’s been severed for thousands of years for many people … that have been in their ancestral lineages for a long time across the world,” he said. He noted how such a long history speaks to the safety of these drugs, which is comparable to cannabis.
If you’re interested in getting involved with the movement to decriminalize entheogens, reach out to Decriminalize Nature, and they’ll send you a welcome packet with all kinds of information about how to get your city rolling, or they’ll connect you with a local chapter that already is.