Home DNA kits can help you pick a cannabis strain

Meg Hartley for Leafly
Published on September 23, 2020

EndoCanna Health’s DNA test. (Meg Hartley)

They say the endocannabinoid system (ECS) is as unique as a fingerprint, and cannabis affects us all differently. Company EndoCanna Health is exploring this by offering a DNA test that will show your body’s genetics and suggest a cannabis profile accordingly, as well as products for that profile. 

This tool wouldn’t be with us today without a real Bob Ross of a happy accident—the moment Len May, CEO of EndoCanna Health, accidentally found an effective way to manage his ADD. According to May: 

“I was kind of hanging out with some older kids, and they asked me if I wanted to smoke a cigarette—and I was like, yeah, you know, I’m dabbling with cigarettes, I’m gonna be cool—and the cigarette was actually filled with weed instead. After I got done coughing, I went back to class, and the windows in my head [referring to what it’s like to think with ADD] they sort of slowed down, and I could focus. So I found my medicine, it was mine.”

After getting kicked out of the house for cannabis—ironically, his parents now use his cannabis formulations—he became a cannabis activist and started working in medicinal genomics, which eventually led to EndoCanna Health, and the ability to use cannabis on a truly personal level.

How does EndoCanna Health’s DNA test work?

While receiving the $199 test can take a month or two, taking the test is a matter of seconds: carefully swab the inside of your cheek, then pop the swab into a tube. After registering your test into their HIPAA-compliant, fully anonymous portal, seal the swab and tube in a plastic bag, pop it into the provided paid envelope, and send ‘er off to the lab. If you have DNA data already, it’s faster and only costs $49.95.

Once your results are ready, log into your profile, which will have an itemized breakdown of your report and suggestions for types of cannabis. The report is broken down into:

  • Anxiety 
  • Cognitive function & behavior 
  • Digestive 
  • Drug dependence 
  • Drug metabolism 
  • Fitness 
  • Metabolism 
  • Mood 
  • Musculoskeletal & immune 
  • Pain, nausea, & neurologic 
  • Sleep 
  • THC side effects 
Digging into my report

Clicking through the various reports shows how cannabinoids interact with your genetic profile in specific ways. For instance, clicking on “Anxiety” brings three more reports: “Fear Extinction,” “PTSD,” and “Stress Reactivity.” 

Under “Fear Extinction,” for example, is this summary of my specific DNA marker findings, as well as suggestions for types of cannabis to use:

In this case, it suggests I start using high-CBD ratio products, as well as cannabis with terpene profiles that include linalool and beta-caryophyllene. These responses are called “formulations,” and my report suggests seven different ones for specific needs. 

Also, the Personalized Wellness Plan links to relevant scientific studies and provides a link to products that match the formulation.

CEO May explained that although EndoCanna Health does sell terpene blends used in some recommended products, they don’t profit directly from sales of products recommended on the Wellness Plan: “We look at certificates of analysis from different product manufacturers and run them to a matching algorithm, and we look for several things: Number one, we look for the percentage of CBD, THC; Secondary, terpene profile; and then some others, like essential oils.”

How to use your cannabis DNA test results

“The best way to get the most out of your results is to understand what your genetic predispositions are to avoid an adverse effect and then to understand which products you can actually take,” said May. 

With your test results, you’re equipped to treat symptomatic conditions based on specific genotypes in your body. “If you have a predisposition to anxiety or stress reactivity, you will know that there are certain cannabinoid and terpene profiles that can actually turn that genetic expression on,” said May. 

For example, if you have a marker associated with not producing endocannabinoids when anxious—as the body ought to—you’ll be able to know what kind of cannabis can be substituted effectively.

And it’s a living document as well, meaning it will evolve as research does. “We have a HIPAA-compliant portal that is dynamically built with lifetime updates, meaning that if there is any research that is happening now that gets published, we provide that as an update to your report on a lifetime basis. And we’re fully secure and anonymized. All the data resides on Amazon’s AWS; it’s fully encrypted,” said May.

May continued to speak on what’s ahead: “The future is this whole feedback loop: It’s the ability to be able to get a response from people, how you know product ‘A’ is really working for you, learn from your experience, and then be able to produce better individualized products.” 

EndoCanna Health is a research lab as well, working on studies all over the world. The company is also looking into expanding the use of epigenetic data and using biomarkers, like Fitbit info, to create a dashboard that will further personalize your experience.

Is the test worth it?

My take is probably obvious by now: I think this is a fantastic resource. I love that it breaks down which cannabinoids and terpenes will help various aspects of my body makeup. As a medical cannabis user, I find this especially relevant—it also confirmed I’m high-risk for flu severity—but these reports will also be helpful for anyone without any medical issues because we all have different bodies and cannabis will interact with each body differently.

EndoCanna Health is also looking to collaborate on research, even with competitors, because “the only way to remove this ridiculous stigma is through science,” said May.

I love it. Let’s science our way from being disregarded as just stoners to having data to improve specific conditions or for overall health, and knowing how best to use cannabis for those specifications. 

And all this magic started with a teenager trying to smoke a cig, and failing. C’est la vie, eh?

US Hearts and Souls

Is current American culture *really* reflecting our hearts and souls?

In good moments, I see people coming together to rise up for what matters, folks advocating both for those who are different than them, and for themselves. I see able bodies who are happy to endure a little discomfort for the safety of those more vulnerable to COVID. And I see the beauty of the human spirit, so willing to fight, support, and serve — and so often with such powerfully beautiful creativity.

But then there’s the rest. Those who think people like me (#spoonie) should just stay home, forever, because they can’t be bothered to wear a piece of fucking fabric on their faces like the rest of the now-recovering world, and the rest of the fucking history of pandemics.

I see people who just don’t care that others (including seniors!) have been working for minimum wage in the front lines, now ready to throw in our teachers; people who whine about being bored and inconvenienced — begging for things to “go back to normal” when the norm is fucking hell for so many.

I do my best to stay positive, but I’m one of them. It’s not okay to be a poor person in our country — is that what resides in our hearts and souls? Do I not count because I haven’t been able to get my body and brain to work in an employable fashion? Because there’s no test for what’s wrong, should I just be grateful that decades of paying disability taxes covered a teensy bit of the time I’ve been desperately trying to survive? If I can’t keep figuring it out, do I deserve to perish? Is that what resides in our hearts and souls?

And are we the kind of people who don’t trust communities reporting mistreatment, even though the stats clearly reflect it (always have), and more shocking video footage of it comes out allllll the time? The kind that still fucking manage to say “is it REALLY all that prevalent though? Things seem fine from my suburb. I just don’t see it.”

Is that what resides in our hearts and souls?

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.

Lupus

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.

Fibromyalgia

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.

Endometriosis

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.

Here’s what symptom relief with cannabis feels like for medical patients

By Meg Hartley
Published on May 14, 2020 • Last updated July 28, 2020

Being a medical cannabis patient often means knowing two worlds—the symptom-ridden world of being in need of medication, and the world of bodily woes dramatically reduced. Because the endocannabinoid system works with other systems throughout the body, cannabis is able to lessen or even eliminate painful health conditions for millions of patients around the world.

I’m one such medicator, and I often find myself describing the sensation of how cannabis changes my symptoms of illness with illustrative language. I wondered how other medical cannabis patients describe the before and after of symptoms, so I reached out to other fighters of a variety of health conditions for some insight on how it feels for them.

I discovered that I am far from being alone in understanding that magic moment of relief. From CBD giving one woman back her ability to drive and to dream (not at the same time), to one man’s sudden insight into how Popeye must feel when spinach gives him that pep, this plant is helping all kinds of people, in all kinds of ways.

Fighters for health describe how medical cannabis helps
Stefanie, Mixed Connective Tissue Disease, age 36, San Diego, CA

“Before, I feel like my chronic pain is taking up space in my lungs, my skin, and my joints. After I use cannabis, I feel the chronic pain melt away, and I feel like I can take the first deep breath. It feels like all the pain that is creeping just beneath my skin suddenly melts into the rest of my body and I feel heavy/cozy and light/weightless at the same time.”

Brian Penny, Chronic Pain, age 39, Tucson, AZ

“I totally understand Popeye better as an adult than I did watching as a child. The moment the THC hits, I notice a Joker-like smile start to spread across my face. My speech speeds up (if I’m talking to someone), and when I realize it happened, I stop and comment on it. Then I laugh and forget what I was initially talking about.

Chronic pain is what I’m treating, and that’s actually what causes the smile (and that Popeye feeling). It gets pretty miserable waking up in the morning, but as soon as the medication kicks in, it lightens the load on my body immensely. It’s a pep-in-your-step kinda thing that gets me off the couch and getting things done, rather than the typical couch lock stereotype. Without it, the combination of pain and age make me feel like I’m moving through quicksand.”

Seth, Irritable Bowel Syndrome, age 36, Framingham, MA

“I have irritable bowel syndrome, which can be quite debilitating to my lifestyle. Some days are normal and others are a must-get-to-the-bathroom-immediately nightmare. There really isn’t a medication or cure, but my friend Mary Jane has changed everything.

IBS is triggered by my stress and anxiety, and to manage that I consume cannabis in a variety of ways. I’m less anxious at work and in social settings, I sleep without my mind racing, and I have normal bowel movements way more often than ever before. Life with IBS will never be perfect, but with cannabis it’s no doubt much better.”

Anita Wolf, Fibromyalgia, age 55, Paso Robles, CA

“Part of fibro is bad sleep, not entering REM, not getting restorative sleep. I went years not getting the right kind of sleep. I now smoke some cannabis before bed and I can feel my body melting into sleep. My mind quiets, my legs relax (restless leg is not just disruptive but very painful), my peripheral neuropathy quiets, and once in full effect, I can roll onto my side. I actually wake up and not feel like getting out of bed is useless.

I am still stiff in the morning but I dream! I hadn’t dreamt in years before cannabis! I don’t take pain meds anymore. My body has had a chance to recharge. I still have pain but not nearly as bad. I use cbd during the day when the pain gets too bad. I can actually drive distances without excruciating pain. I drove 5 hours one day and thanks to a fairly good night’s sleep and my CBD vape I made it without tears.”

Sophie Ryan, Optic Pathway Glioma Brain Tumor, age 7, Sherman Oaks, CA

“Cannabis makes me feel healthy and strong! It has really helped me with my boo boo in my brain and it keeps the seizures away. If I don’t have my cannabis my seizures come back really fast, and I don’t like that. My mommy said that my immune system is extra strong too, and that helps me stay well. I love taking cannabis!”

Mary, CPTSD, Anxiety, Depression, Arthritis, age 36, Portland, OR

“Before MJ I often feel stuck ruminating on a subject. Cannabis frees me from repetitive thinking patterns and disrupts me to focus on something that feels good. Physically, my body feels less tight, and I am able to relax.”

Lauren, Ehlers Danlos Syndrome, Dercums Disease, age 32, San Diego, CA

“I’ve always felt the feeling of a warm gooey egg being cracked on the top of my head, that melts, loosens, and soothes my symptom-laden body as it makes it way down. Without it, I’d be regularly immobile, unable to eat or take necessary medicine, and stuck using opiates, steroids, and NSAIDs, which I now avoid. Cannabis aids my recovery from migraines and reduces the varied neurological symptoms of neuroinflammation or brain fog.

It simultaneously seems to repair my proprioception, rectifies my overactive autoimmune response, and soothes my gastrointestinal illness by activating the rest/digest state of my otherwise hypervigilant autonomic nervous system while stimulating my appetite. Weed relieves many types of pain, most notably, my vascular spasticity, allodynia, neuropathic pain, myofascial tumors, lymphatic flow, and chronic inflammation.

Cerebrally, I literally feel my vibration frequency shift once the purp has done its tasks. I become more mindful, patient, and empathic as minor euphoria highlights the vibrant, radiant colors of life, savoring moments of beauty and expressing our souls highest good through music and art.

This sacred herb services us in the process of honoring our self-love, embracing grounding embodiment practices, and prioritizing the wellness rituals of our self-care. Ultimately it unites people while embracing our need to simultaneously remain autonomous agents. Its miraculous magic just lights me up about life!”

Why People With Chronic Illness Fake Being Healthy 

Faking health is a common coping mechanism for someone with chronic illness.
Faking health is a common coping mechanism for someone with chronic illness.

By MEG HARTLEY
Ravishly, 11.6.19

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.

House chores.

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.

Bring sustenance.

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!

Say Hey.

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.)

Ask.

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.

“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
Ravishly, 07.11.18

I smile a lot. Not because it’s my favorite, though I certainly don’t mind, but because my face just does that.

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. 

My Chronic Illness Left Me Broke And Homeless, So Meditation Is My Medication

Meg Hartley for Ravishly
03.16.18

(Photo courtesy of the author.)
(Photo courtesy of the author.)

I’m currently homeless and have been for a month now. My body stopped working right a few years back due to fibromyalgia and injury from severe B12 deficiency (cause that’s a thing), and long story short — maintaining a job when you’re calling in sick all the time is very hard, impossible even, and getting on disability usually takes years, if it happens at all. It’s real sticky-wicked to have your body become unpredictable and tortuously painful. And the financial mess that comes with it creates one hell of a situation. 

So here I am. Homeless.

I often wake up with the sun as it pours its first light into the backseat of my 1993 Toyota Camry. On these days, like today, and the three before, it takes a very long time to actually get up. My body feels like it weighs hundreds of pounds, each bone crushing the one under it as I slowly unfold myself from the fetal position. I go in and out of consciousness as I try to get up, too awake to really sleep, but too sleepy to really wake.

Eventually, I gather myself into a sitting position and reach into my bag of clothes that live in the passenger seat. Even though the windows are usually too foggy for anyone to see me, getting my pajama shirt off and my sports bra (can’t handle underwire with my new bod) on stresses me out every single time. 

Once I’m dressed and have wrangled my hair into a top knot, I pull my tarot cards for the day and do a short meditation on them. Today was The Magician in reverse, reminding me to focus my energies on the things that I want to bring into my life, like a book deal; and not the things I don’t want, like ill health and no place to live. The second card was The Star, directing me to stay hopeful. 

The first order of daily business is to empty my bladder and charge up my devices: my phone, my tablet, and my vaporizer — which I use for medical cannabis. Whether in a library or a coffee shop, the latter makes me nervous every day, just as much as potentially flashing a passer-by. I’ve yet to have a single person visibly notice, and if someone were to recognize my lil’ PAX vaporizer, it’s probably just because they use one, but it’s nervous-making nonetheless.

I get as much as I can get done in these first few hours while charging my devices. 

My nervous system pain is reset by sleep, with morning being as good as I’m going to feel, and the pain getting worse as the day goes on. This really sucks on days like today, where it starts out so horrible. Bonkers days like this are for finding home/job leads and for creative work, the kind of work that gets me closer to a book deal. The days where my head’s on a bit tighter are for any freelance client work I’ve got, errands, applying for jobs I have no idea if my bod will let me perform, and other reaching-out oriented fuck-up-able items.

When my pain levels get to near-crying, I pack it up and head back to the little neighborhood that I’ve declared as “home.” It’s a residential area with a busy street going through the middle, lined with all kinds of various businesses. This means that there are all kinds of random cars parking in this area, so it’s not the kind of neighborhood where a newcomer would be noticed. It’s also well-lit and seems very safe.

My view.

I try to get there before people start getting home from work. My car is very loud and my out of state plates further make us stick out, so I like to sneak in early before everyone’s out walking their dogs and chatting with the neighbors. I hop into the backseat and lie down, covering myself with one blanket and plopping the other, more fluffy blanket, on my middle — hiding my face from anyone walking by, aided by a little sun-blocker shade on the sidewalk-facing back window. I also have a larger shade covering the windshield — the store only had a conspicuous zebra-print one, so I make sure to put it snazzy-side in.

Most days I just lie in my backseat for hours and hours at a time, just as I did back when I had a bed — too overwhelmed with pain and other symptoms to do anything else. 

I feel lucky that I have such a rich internal world. Though I still battle clinical depression and other more typically unpleasant thought patterns, for years before this health debacle stole my external life, I worked with mindfulness and meditation to create a sanctuary-like headspace. My mind is now much like an amusement park: there are definitely some funhouse mirrors up in there, and a quite-terrifying horror house in the back, but the bulk of it is quite amusing indeed.

Once the neighborhood settles down for the evening, usually after several hours, it’s dinner time. I have a genetic mutation that requires a special diet: no gluten, no dairy, and as organic as possible. Breakfast consists of a handful of brazil nuts, and my lunch/dinner is jerky and snacks like snap pea crisps and trail mix. Dark chocolate is always involved, often eaten in conjunction with bulk-section gummy bears or bites of an apple. This deliciousness, combined with a couple of episodes of The Good Wife, is often the highlight of my day.

My tablet’s battery usually bunks out before my bodily energy reserves, but sometimes it’s the other way around, either way leaving me with several more hours before I finally pass out despite the pain, with the help of several prescriptions. My second round of just lying there is more meditation-oriented, and I work to focus and calm my mind, sometimes getting lost in beautiful and timeless breaks of stillness; but other times I fail, getting lost in memories and my own stories about them.

Eventually, usually, sleep and I meet.

And then I do it all over again, hoping that today will be the day that I find a way to make an income with my body behaving like this.

Today will be the day that I find a place to live. Today will be the day that I find the action that propels myself and my situation forward. 

*Editor’s Note: We here at Ravishly want to help Meg in anyway we can. If you’d like to help Meg, too, you can tip her via  paypal.me/MindfulnessMeg

Being Homeless in Long Beach

Meg Hartley for Long Beach Post
DEC 15 2017 8:15 PM

I never thought I’d really become homeless. Even in my last months in my apartment, as I was months late on my rent at the time, I still didn’t think I’d end up here, not really. Even after my landlord couldn’t take it anymore and (very politely) evicted me, I was still sure something would happen before it got this bad.

In the fall of 2015, I almost died from B12 deficiency, which is something I had never heard of. It’s often thought of as an old-timey illness that we don’t get anymore, like rickets or scurvy. It used to be a highly prevalent cause of death and paralysis. I have a couple of genetic mutations that make me predisposed to nutritional deficiency, though it probably started as a congenital condition.

B12 is responsible for the health of the brain and nervous system. Since the nervous system is located throughout the body, symptoms can manifest in many ways. Mental illness is one of the frequent manifestations of B12 deficiency. Since my levels got so low at a young(ish) age, it’s probable that my mother was deficient when she had me, passing on the deficiency. She, Linda Darlene, committed suicide in 1997—a lack of B12 likely fueling her bipolar disorder. A vitamin could possibly have saved her, a teeny little vitamin. It’s infuriating.

I was extremely lucky to get a diagnosis, and even though it took 33 years I feel very grateful for it. I had gotten Obamacare and was able to see a naturopath for the first time, who found the deficiency on her first try. At first my symptoms fell away like magic, but after several months of stabbing myself in the legs with hydroxocobalamin, my progress plateaued.

Doctors ruled out all of the other options before a rheumatologist finally diagnosed me with fibromyalgia just last spring. I had started to wrap my mind around the disease, and what I could do about it, when I was evicted.

A few doctors had suggested that I move from Portland, Oregon to a hotter and drier climate. So when a college friend offered to move to Santa Clarita with me I knew I had to take her up on it. During this time, as I focused on doing my physical therapy exercises as much as possible—which wasn’t nearly as much as I wanted—I was very drawn to Long Beach. At first it was probably due to growing up with Sublime, but I’d also do internet searches for things like “hottest beach in California,” or “the cultural Portland of California” and Long Beach would pop up over and over.

While I marvelled at how miraculously my body was reacting to the 100+ degree weather, I also balked at the sameness of the Santa Clarita area. The businesses are mostly corporate, and even the local ones felt generic. The whole place seemed to cherish it’s, to me, blandness, happy not to offend anyone, nor impress them.

I didn’t spend much time thinking about that though, as I had bigger fish to fry: I had upped my exercise time by 2.5 times and was feeling better and better, noting that my recovery time from doing things like grocery shopping was getting shorter and shorter. I still feared overdoing it though, as doing so caused flares which brought such horrific pain that I had to deal with suicidal thoughts as well.

After nine weeks in Santa Clarita, I had overstayed my welcome. This revelation came about quite explosively, ending with a very large man yelling through my door, “Get the fuck out or I’ll fuck your shit up!” I didn’t stay to find out if he meant my stuff, or my person. I left in a very dramatic and clandestine fashion, with as much as I could carry; around dawn, before everyone woke up.

The aforementioned suicidal thoughts had been a frequent threat even without flares, and I was concerned, but figured I’d get my California Obamacare set up and be at a shrink’s office in no time. Unfortunately, I’m still figuring out my coverage, and my suicide risk went from Googling “Will 23 amitriptyline kill me?” to wondering, “What can I drive my car into fast enough to kill me, but hurt no one else?”

I checked myself into the nearest mental ward.

It was my second time in 2017, the first being after I received my second disability denial. I honestly used to judge people on disability, if only subconsciously, assuming that many were scamming the system, that they were lazy. I feel like we are taught by our society to feel that way. Now that I’m not only familiar with severe and chronic illness, but also the convoluted and infuriatingly slow social security system—my views have completely changed.

Getting on the California State Disability Insurance Program literally takes years, it seems as if the system is meant to discourage people. That they hope we’ll give up or die before receiving it. And if you do eventually get it, it’s barely over $1,000 per month, which doesn’t go a long way in these parts. Or Oregon. Or anywhere else I’ve lived.

In the meantime, five days of group therapy, mild tranquilizers, and lots of sleep at the mental ward helped loads. My aforementioned genetic mutations make it hard for my body to process toxins, so I react to pills, among many other things, differently than most people. Because of this, I can’t remember large portions of my time there (or my mental ward stay in Portland), and the day of my release is fuzzy at best, I have no idea how I got there, but I do know that a kind non-profit offered me a hotel voucher for the evening.

The next morning I could still feel the pharmaceuticals in my body as I headed back to the non-profit, refreshed from a good sleep and hopeful that I could get another voucher. They couldn’t give me another, and my reality hit me very hard as soon as they said no. I got hysterical again, then eventually apologized and left, headed to my 1993 Toyota Camry. And, naturally, she wouldn’t start.

I cried for at least an hour, sitting there outside the non-profit, no doubt making them feel very uncomfortable. Eventually I calmed down and ordered the tow service that my insurance company offers, luckily for free, because I had $1.82 in my bank account. They towed me to a nearby repair company and I called a couple of friends who had reached out. They tried to get me a hotel room but the hotels required the hotel guest to pay.

I was in a CVS when I realized that I was really and truly homeless, that I’d have to sleep in my car that chilly evening. I, yet again, became hysterical. An angel of a man who worked there asked me what was wrong and I tearfully told him, then he offered to buy me a $20 blanket, bringing four over and asking me which one I wanted. That softest of all soft blankets got me through the first night sleeping in my car. That, and, a makeshift pillow made from one of my headrest covers.

Once I had the “pillow” and I lied down I realized I was okay. This wasn’t so bad. I’m pretty short, so only kinda cramped. I even had an episode of The Good Wife downloaded and ready to watch. I felt so silly for making such a big deal out of it, for making all of those people suffer because I was so scared. I told myself I was just “urban car camping,” and slept surprisingly well.

The kind manager of the repair shop got my car running again for free, noting that it was just a “band-aid fix,” and he also gave me permission to park there that night. After I set up an online fundraiser for myself, I headed out to clear my head and make a plan. I wandered about a bit aimlessly, ending up in front of a store called “Buy Buy Baby.”

Something about that sign, or rather everything about it, made every fiber of my being scream, “What the fuck am I doing here?!”

By the time I got back to the repair shop, I had decided that I would leave Santa Clarita; but that I would stay in Los Angeles County, where my body liked it and where my insurance had finally become active. So I did another internet search, “homelessness in Los Angeles county.” And the first article that came up heralded Long Beach as the only city to lower their number of homelessness when it had gone up everywhere else. A little more research, and Long Beach it was.

Meanwhile, for the fourth time since the health crisis, my online fundraiser had already raised over $1,000. My friends are so amazing, as is the community in my hometown of Juneau, Alaska. I’m so bonkers grateful, there is no way that I would have survived all of this without them. No. Way.

So I headed out, no longer flat broke, on my way to Long Beach. It was a Friday night when I got here, and as I searched for parking downtown I wondered if I had made a horrible mistake. It felt dodgy even though I couldn’t place why. (An Uber driver would later tell me that it did indeed used to be dodgy, but had been cleaned up over the last decade. He said that’s what I was probably feeling, assuming that I held intuition as something real, which I very much do.)

I awoke the next morning after not sleeping much at all, as every little noise seemed like it was danger, even though it kept proving to just be drunken people feeling jubilant. Everything hurt as I woke and I felt dismayed at the realization that, of course, the homelessness organization I came here for was closed for the weekend. I decided to cheer myself up by checking out Naples, the lovely little Italian-inspired island with canals.

After checking out those little islands, which I highly enjoyed, I took the time to hang out at Mother’s Beach for a while. Afterwards, feeling rejuvenated, I parked my car in the residential area of nearby Belmont Shore and hung out at a coffee shop until it got dark. As I sat there I noted the 24-hour Jack in the Box across the street, for restroom needs, as well as good street lighting. It seemed pretty safe. I decided to give it a shot.

I walked out to my car and got into the front seat. I checked to make sure no one was looking, then I moved, or rather flung myself, into the back seat. It was a Saturday night, so the drunken passers-by were, again, frequent. I froze everytime a group went by, scared they’d…bother me, I guess? Is it illegal to sleep in your car? (Something I’ll Google only once I’m homeless no more.) Only one fellow noticed me and said something to his friend, who replied, “I’m sure she’s just sleeping it off.”

Monday finally arrived and I called the Multi-Service Center before heading over. The woman asked me where I became homeless, and I told her Portland, Oregon. She told me that they only help those who became homeless in Long Beach and hung up apologetically.

So, unable to go back, I went down there and lied.

After a very frank conversation with my social service helper, I left with a few shelter flyers and the shower times. He didn’t seem particularly hopeful about my finding an affordable apartment, especially since I had no income. But at least there were shelters to call home until I got my life sorted.

I called a women-only shelter and learned that you had to go there in person at 8:00AM to get on the waiting list. I did so, and a couple of very kind and very busy women got me signed up to stay there that night. I relaxed into my seat a little, excited that I could go back to bed. Nope. The shelter was closed until 10:00PM, opening only after mandatory church service and dinner.

But first they needed to have me shower and change into fresh clothes while they washed what I was wearing. They gave me choices for much needed shirts, shoes, and pants that were actually pretty cute. After the best shower ever, I left the building in adorable purple pants, a yellow t-shirt, and gladiator sandals.

After trying, unsuccessfully, to get some sleep in the meantime, I headed back down there at 6:40PM, right before the church service started. What looked like a relatively safe block in the daytime seemed straight-up sketchy at night. I wondered if I, and my car/stuff, were safer at Belmont Shore, but eventually figured that if a car was going to get robbed it probably wasn’t my hoopty from the early 90s.

Besides the smell of beer and cigarettes, I really enjoyed the service. The preacher kept interrupting himself with lines like, “Praise Jesus!” and “Halleluyah!” Most of the audience was right there with him, all wrapped up in the sermon, while others nodded off or grumbled. The room was full of people from both the men’s and women’s shelters as well as neighborhood locals.

At one point the preacher said something that particularly moved me and I noted someone nodding in agreement, just like I was, and I felt profoundly connected to them, to the preacher, to the moment. That feeling made it seem like everything was going to be okay, that I’d find my way through this mess. After the sermon, I followed the crowd towards the dining room. I wondered what to do next but heard someone yelling, “Doors of Hope ladies, up here!” I did as directed and was warmly welcomed by the other ladies at the front of the line, smiles on our faces as we eyed the already-plated dinner tables.

The dinner was quite good, as was the conversation, though I mostly listened. Afterwards we, finally, went to the dorm. Around 30 twin-sized beds filled the room, reminding me of orphanage movies from my childhood. The kind women from that morning were organizing everyone’s required showers, but since I’d done that earlier I was free to take my sleeping medicine and lay down in that tiny but glorious bed.

After a great sleep, at 6:00AM the lights went on. It was Thanksgiving day. I felt pretty good, always a nice surprise from a malfunctioning body. I didn’t know how I’d spend that day, how I’d solve my problems, or even if my car would be waiting for me outside—but I felt grateful indeed.

How I Realized There Is No Shame in Being Ill

Meg Hartley 

August 17, 2017

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.