Tag: chronic illness

Why People With Chronic Illness Fake Being Healthy 

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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. 

How Breathing + Cold Exposure Can Improve Your Life

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The Wim Hof method activates the mighty endocannabinoid system, the body’s wellness regulator.

Meg HartleyNov 10 · 4 min read

Photo via Instagram

This article was orignally published on ILLUMINATION, I very much appreciate claps (you can do 50!) and follows over @ Medium! 

There are lots of bizarre-sounding health fads out there, and many of them aren’t as effective as they are attention-catching, but I can say from personal experience that the Wim Hof Method (WHM) is one that actually works.

It’s just breathing exercises plus cold exposure, but it’s been hailed for improving, or even curing, all kinds of health conditions, as well as improving general health and well-being — and there’s a science to back it up.

Here’s a list of benes: More energy, boost the immune system, anti-inflammatory, better sleep, increase sports performance, workout recovery, autoimmune disease relief, arthritis relief, post-treatment Lyme relief, COPD management, migraine relief, MS management, asthma management, lower blood pressure, improve metabolism, and relief from fibromyalgia symptoms.

I’m in it mostly for that last one: helping ease the hellacious pain that is fibromyalgia.

I can’t report that I’m totally healed, but after 3–4 months of doing their daily breathing + cold shower technique, my pain decreased immensely. I’m unable to do the cold shower portion in the winter due to bone pain, but just the breathing alone still keeps fibro pain below a 3, when it was 8’s and up prior winters. And in the warmer months when I can do the cold shower portion, I don’t even think about fibromyalgia! It’s been a godsend.

Though this exercise is great for anyone with a body, I especially recommend that my fellow fibro-fighters and spoonies of all kinds — including mental health warriors and the neurodiverse — keep reading, even if your condition wasn’t listed this could help.

The breathing exercise also just feels great, delivering pleasant tingling sensations throughout your body; it’s both invigorating and relaxing, plus my back and neck usually pop with ease afterward.

The Science
Photo by Mathew Schwartz on Unsplash

The reason the WHM is so effective is that it activates the endocannabinoid system (ECS) which is best known for being the bodily system that works with cannabis, but it’s so much more.

The ECS is in charge of regulating virtually all of the other systems in our body, so it’s big deal, and it’s criminal that doctors don’t study it in school. Science has shown that atypical endocannabinoid levels are associated with many chronic illnesses, several of which are listed above, as well as forms of neurodiversity — like Autism, ADHD, Tourette’s, and others.

In 2018 researchers studied the WHM on Wim Hof himself, finding increased activity in the areas of the brain that are “associated with brain mechanisms for the control of sensory pain and is thought to implement this control through the release of opioids and [endo]cannabinoids.”

In other words, the breathing exercises and the cold exposure cause an increase in ECS activity, allowing it to better regulate the body’s functions and get unbalanced aspects in check.

Again from the study, “The practice of the Wim Hof Method may lead to tonic changes in autonomous brain mechanisms, a speculation that has implications for managing medical conditions ranging from diseases of the immune system to more intriguingly psychiatric conditions such as mood and anxiety disorders.”

How to do the Wim Hof Method
Photo by Tim Goedhart on Unsplash

Completing the WHM should take 15–20 minutes, all you need is this free video and a functional shower (or another form of cold exposure). The video will guide you through a 3-part breathing exercise, which will be repeated 3 times.

Here’s how it goes:

  • The first element involves circular breathing, which is simply breathing into your belly, letting it extend, then pulling that breath into your chest, then releasing. The video will take you through 30 reps, showing you an orange bubble that inflates and deflates with you to help keep time.
  • In the second bit, Hof will tell you to let all of your breath out and to refrain from breathing in for as long as you can. It’ll give you 60 seconds, then 1:25 as goals — but don’t feel pressured, just fast-forward the video when you need to breathe in, or pause if you can hold out longer.
  • The third portion will have you do the opposite, breathing in as much as you can, then holding the air in for 15 seconds before releasing — if you haven’t felt the great bodily feelings yet, they’ll come for that part.

Then it’s time to hop in a freezing cold shower! It’s hard at first, but they became refreshing for me after a few weeks — you’ll adjust to the cold temperatures too, you really will. (Which expands options for outdoor swimming fun…)

In the meantime, if the cold water is just too cold, try starting it at normal temps and then moving to cold. Start out with whatever your body can handle, and work up to 2–3 minutes.

Happy Hoff’ing!

How cannabis helps ‘spoonies’ soothe the symptoms of chronic illness

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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

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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!”

Chronic Illness Gets Even Worse in the Winter: Here’s How You Can Help

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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.

How I Realized There Is No Shame in Being Ill

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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.

5 Reminders to Help You Support a Seriously Struggling Friend

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Yogi Approved, Guest Author Meg Hartley, 2017

We all know the struggle. Do you know someone who’s hurting? Do you want to help, but fear it’ll create drama in your own life?
 
Whether it’s a health problem, a heart-wrenching breakup, financial woes, or any other struggle, we want to be there for our friends. These tips could help!

Hard times will test your relationships, and it’s all too common for people to find themselves facing the struggle alone. It happens to the best of us: we want to help, but distancing ourselves from friends in the thick of it is, unfortunately, the societal standard.

Why is it So Damn Difficult to Help a Friend Through the Struggle?

Friends have distanced themselves from me when I needed them, just as I’ve also been guilty. A friend of mine was struggling with serious health issues a few years ago, and it took me six months to call. I still feel remorse for not being there for her. So why do we do this?
 

The struggle of others can trigger our own unprocessed emotions and also bring up fears.

 
The struggle of others can trigger our own unprocessed emotions, and bring up fears and all the behaviors that fear comes with. Sometimes struggling friends are spiraling out of control and, especially if you aren’t currently close to that person, it feels like a good time to draw some boundaries.
 
But then there’s the other times.
 
The times where someone needs and wants help. There’s a specific problem, the person knows it, and they’re looking for solutions. In this situation, we have an opportunity to truly be of service to someone, even if all we can do is simply listen.
 
When we help others, we feel empowered, capable, and meaningfully connected. These are opportunities that remind us that no one can do it alone, and that no one should be expected to.
 

Here are 5 Things to Remember to Help You Support a Struggling Friend

From someone who’s been on both ends of this pickle, consider these tips to help out a friend in need.
 

1. Be Cool

Emotional conversations can be stressful, so try not to come off anxious. Plan to meet up somewhere safe where you can really talk and bring up their struggle.
Before you meet up, think about what you’d do if you were in your friend’s situation.
 
Do they have a quality support system? Is there any way you can help that you’re comfortable with? Be prepared with solutions if they’re available, and be ready to listen.
 

2. Stay Positive

If applicable, share a similar struggle of your own and describe how you got through it in a positive way . . . but don’t glamorize it. Sometimes people define themselves by their struggle and think it makes them more interesting, and you don’t want to encourage this.
 
Be understanding, but gently guide your friend back to how they might fix/heal the sitch when the conversation circles back to the pain. Stay solution-oriented, which might mean helping your friend seek out professional help.
  

3. Bring Friends

This isn’t something that needs to be done alone, and it’s likely the kind of problem that could use multiple perspectives. If you bring someone else, be sure the person is a close mutual friend, or maybe a professional who can help in some capacity. This person needs to be trusted.
 
Oh, and don’t make the company a surprise. Make sure your friend knows you’re bringing someone else.
 

4. Don’t Judge

When your world collapses and you aren’t handling it well, it’s easy to be hard on yourself. Make sure you provide your friend relief from that, and take some time to reflect on how awesome they are before you see them.
 
Make it clear that you’re there to help from a place of zero judgement!
 

5. Check Yourself

Check in with your own emotions before you see your friend. Does their struggle trigger you? Pay careful attention to your thoughts and feelings, especially afterwards. If you’re severely triggered, it’s best to seek out your own healing before you help your friend.
 

6. We All Struggle, So Let’s Have Each Other’s Backs

Deep, emotional conversations are easy to avoid. We have our own sh*t to deal with, right? The thing is, helping a friend through their struggle may be what you need to figure out yours. Space away from your own problem is where you wind up feeling empowered to solve them.
 
When you’re there for a friend, you develop meaningful, lifelong relationships. Also, if you haven’t yet had your hard-knock times . . . you will, I promise. And when you do, you’ll want to have a friend by your side.
 
Thanks for your bravery and compassion, and good luck!

I Am A “Spoonie.” Here’s What I Wish More People Knew About Chronic Illness

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MindBodyGreen, November 28, 2016
By Meg Hartley, mbg Contributor

I Am A "Spoonie." Here's What I Wish More People Knew About Chronic Illness
Photo by Stocksy

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.

Never. Again.

What I learned after 10 months of being sick and stuck in my apartment

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SheKnows, AUGUST 4, 2016 AT 8:00AM AM EDT
by MEG HARTLEY

What I learned after 10 months of being sick and stuck in my apartment
Unsplash

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 a vitamin deficiency nearly paralyzed me

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SheKnows, JULY 21, 2016 AT 8:00AM AM EDT
by MEG HARTLEY

How a vitamin deficiency nearly paralyzed me
Xesai/Getty Images

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.