Bringing the Unseen Into Focus: Invisible Health Conditions, Awareness, and Experience

When the body screams but the world can’t hear...

For this blog post, I want to focus on something close to home. July is Disability Pride Month—a follow up at the heels of June being M.G. (myasthenia gravis) Awareness Month and May, Fibromyalgia Awareness Month. Awareness in general, all year round, is the important thing, but people like holidays—whether they involve calls to redirect focus, learn more, and act—or to celebrate. Disability Pride Month involves recognizing the amazing things disabled individuals can and do achieve. Awareness months involve learning more information to understand what occurs in the world around us and hearing the stories of individuals of communities to put facts into context of lived experiences. Since we're all busy, sometimes it helps to have both in front of us.

This is why I’m writing this ridiculously personal post, even though I have anxiety sharing so much. I don’t want to be pitied or admired for my conditions but appreciated for my passions that I share with the world and the talents I try to build. That being said, invisible illnesses are invisible challenges, and it’s important for people to understand the impact unseen illnesses—especially dynamic chronic conditions—can have on people’s lives, especially when judgment affects perception, opportunity, and accommodation. Disability pride and awareness months exist because we can and should build a world that is more welcoming and comforting to everyone, not just those who are lucky enough to not be affected by the bad health card (yet.) We've clearly failed to bring this world into being so far, given politicians and other ignorant and unkind people think it's okay to spout hate at those who are struggling, mock others to make themselves feel superior, and reinforce systematic institutional discrimination by cutting social aid networks.

(note: everyone inevitably faces some kind of health challenge.)

The invisible conditions I deal with have an impact on my body and life, even though I try to minimize their effect, get things treated, and live as full of a life as I can. These conditions include myasthenia gravis (MG), fibromyalgia, ADHD, digestive conditions, sleep phase delay syndrome, asthma, depression, generalized anxiety, sensitive skin, and former PTSD. I’m forever caught between ‘I know it could be more challenging’ and ‘ahhh, my body (or brain) is doing that thing again and it’s screwing up my plans.’ 

Having the autoimmune disease myasthenia gravis (MG) means that my immune system malfunctions, screwing with the site where nerve cells transmit signals to my muscles to freaking move (the process at the neuromuscular junction that triggers muscle contraction.) To cut out the jargon, my skeletal muscles that support voluntary motion tire from overuse much faster than others, so the more physical activity I do, the weaker I become.  While a non-MG person might feel wiped after running a marathon or lifting a truck, I can end up drained just from walking across my house too many times or climbing too many stairs. How drained depends on how bad of a flare-up day it is. The acetylcholine neurotransmitter is supposed to bind to the receptor, but instead I have autoantibodies mistaking the acetylcholine for a body invader and attacking me instead of an infection/outside threat. (Fun!)

Having fibromyalgia entails potential increased levels of the neurotransmitter substance P (which amplifies pain signals), reduced serotonin and norepinephrine activity (which inhibit pain), chronic low-grade inflammation involving glial cell activation/increased microglial activity and elevated levels of pro-inflammatory cytokines found in cerebrospinal fluid, and/or an abnormal hypothalamic-pituitary-adrenal (HPA) axis, (which regulates stress response.) To put that more basically, it means that my central nervous system is a little fucked—a “central sensitization disorder”, from my brain to my spine, causing hypersensitivity and over-reactivity to all kinds of stimuli—pain signals from actual pain, but also from light, sound, touch, and temperature. I’m also easily tired, sometimes to the point of being foggy, prone to migraines, stomach-aches, and sleep issues—all symptoms which overlap with other co-morbidities, frustratingly.

These are the top conditions affecting my life that have recent awareness months, but other things like sleep phase delay syndrome, asthma, digestive conditions, and anxiety/depression have not been a picnic either. Sleep phase delay syndrome provides a screwed up circadian rhythm that leaves me exhausted in the morning and alert/restless at night. Asthma and digestive conditions mean I have to be very careful about what I’m exposed to or what I intake (goodbye dairy, gluten, and frequent high FODMAP foods). ADHD and anxiety—especially decision paralysis—leads me into wormholes of hyperfixation. Depression and PTSD have stolen parts of my life that could have been productive or celebratory for sobbing. I’ve had times in my life when cluster headaches and migraines have also taken days to recover. I am not just my chronic illnesses, and I am lucky to have good days and intermittently abundant experiences, but for the breaks in between, it’s not what I pictured for life.

The trick of invisible illnesses is also that they are not always apparent—dynamic illnesses in particular can ebb and flow, chronic enough so they never go away, but fluid enough that they fluctuate and flare to different degrees across time. This means that while some days, I’m on fire (the good kind—running errands, scrubbing the house, dancing at parties), other days, I barely get the basics done and I’m wiped out. Stress or sickness makes it worse, and illnesses like COVID or RSV have previously left lingering after-flares. Moreover, every chronic condition feeds into another—slow wave sleep is helpful for nervous system recovery, muscle/tissue repair, and for me to not be a complete zombie space-case with exacerbated ADHD. Aside from SPDS, having to use my inhaler for asthma messes with my sleep as well—and is terrible for my teeth, which are also affected by having the worst gene variant for inflammation. We are whole bodies, not just our parts.

The other side to not being apparent, is that invisible illnesses do not necessarily show outright, like eczema on my hands, or friends who use noticeable daily mobility aids—but I feel them both, deep in my muscles, which grow heavy, pained, and difficult at a much faster rate than those who do not have the conditions. Part of being whole people, not just our bodies or our parts, is the way that our conditions affect our experience of life.

I often wake up fatigued, hit a decent window in the early afternoon to get things done, then crash again by evening—unless I conscientiously rest earlier in the day to sometimes get more fuel later, or limit my physical activities, so I might have more spoons to stay in front of my computer doing work. Somedays, my widespread muscle pain and fatigue is unbearable; other days, I minimize it and filter it out. Some days, I get post-exertion brain fog—where others get a runner’s high or sharper with more stimulation, I get fuzziness. When I’m overwhelmed, I either tune everything out, have delayed grasping, or I fixate on the wrong thing. It’s a weird cocktail of ADHD, MG, and plain overload—and while it may not be constant, when it happens, it’s not helpful.

All of this provides an extra exhausting task: anxiously assessing how variables might affect my body and thus affect my life—whether that variable be the winter freeze or summer heat, the weight of the bag I’m carrying versus the amount of walking I have to do, the time I have to spend in transit, walking, or doing physical activity, if I have my meds with me and have taken them on schedule, if I have drank enough water, if it’s part of my hormonal cycle that flares my inflammation and other conditions, or if I will otherwise get overstimulated and be in pain from it (I hate the bright light and am not great with jarring, unpredictable, or thumpy-sounds/vibrations—the latter possibly made worse by emotional association of door slams, stomping, and other jarring noises with anger (PTSD is also dumb). This assessment of variables is compounded by worries and health scares about bigger issues that run in my family and genes--like cancer, heart disease, kidney disease, and so on. Most of these have not been in affect yet (pound on wood), but I have symptoms, family history, and test results that require scans and extra medical testing/early detection that are anxiety provoking, to say the least--and add to my frequent consideration of how diet, health, and choices affect life, as well as his some things are irritatingly potentially not in our control, at much at we might try.

Beyond this, when I’m stressed or have to keep going without rest for 12+ hours (or sometimes less), especially in a physical way, I end up with tremors or vomiting. I’ve learned to say “It’s just pressure” when doctors poke my stomach, even though pressure is often painful—to differentiate the levels of pain to know what they consider an issue versus how it actually feels to me. My fibromyalgia was only recognized at a physical therapy session massage when I winced and the doctor exclaimed, “Most patients love this part!”

In order to combat the variables that affect me, I try to find workarounds. Even before my MG diagnosis, I’d already adapted into yoga pants instead of jeans (too heavy), lightweight shoes instead of boots (can’t lift my feet), small bags or backpacks over heavier purses, and asking for help with stairs or carrying things. When I travel—even just to pet-sit or go to stay in the guest room at a friend’s house—on top of not forgetting my meds, I often pack a portable air filter for asthma, my heating pad for pain, my own sheet, blanket, special soap/lotion, facewash, and other sanitary items (for skin issues), special food (so I know I can eat, given my dietary limitations), ear plugs and sunglasses for overstimulation, and special teas to wake up and to unwind for sleep. Everything from medication to special soaps and food add significant costs, making my life more expensive than it might be, which is extra frustrating in a lifetime of often just-getting-by, income-wise—but the alternative is misery.

Beyond travel, even just going to parties means planning around how much I can do. If I walk a lot getting ready or socialize too long, I start slurring, my face droops, and smiling becomes effortful. It’s frustrating being self-conscious about a body that doesn’t match how I feel inside. Even typing eventually fatigues my hands. I can’t always walk and talk at the same time, and stairs can require intense focus—not something most people think twice about. One of my workarounds is to try to only be seen on my good days, when I'm my best self, but given life's demands and the "more I do, more likely I am to start flaring" conditions I live with, that's not always possible. I have a bit of a paradox between really liking experiencing things/being included but also strongly feeling, 'do not perceive me' when I'm not in my best light, please!

This brings me to how challenging it can be feeling the weight of possible judgment. I look fine, so why can’t I just do things fine, like so many others who likewise look okay? Or on other days, when I don’t look fine, my face muscles contort or droop, making it difficult to smile or express the emotions I’m actually having at the moment, also bringing possible judgement—am I smirking or mean-mugging them? Do I have a different kind of disability? Am I having a stroke? [oof]

It’s even more frustrating because it’s not always consistent—meaning, it’s all a calculated gamble and balancing act, where I sometimes take a chance and win, and other times need to adjust my expectations (read: hopes) and anticipate next time that: “If I do this now, I might totally fuck my ability to do that later.” This has often left me thinking about the origins and causes of the conditions.

My pain and fatigue surfaced, practically overnight, after a traumatic medical incident requiring emergency surgery when I was 18. I had to get a full body blood transfusion, and this may have led to the active antibodies issue connected to MG. I noticed weakness start growing more after that time too, and it continued to get worse over the next decade (to the point I fell 32 times in just over a year at one point, having extreme difficulty walking, holding items, and honestly, pre-correct diagnosis, worrying me that I might end up in a wheelchair or dying very early.) Ataxia was turned over for suggested minor dyspraxia for some earlier milder occasional weakness/related symptoms which was turned over for MG; regardless I still do not have the hand-eye coordination, moving-object depth perception, and consistent muscle precision required to drive. There is also some linkage from fibromyalgia and MG to Epstein Barr—a common virus that causes mono. I had a terrible case of mono for two months when I was a teenager, and my treatment of it was delayed by a parent not taking me seriously when I said I was sick. Fibro is also linked to PTSD.

Being properly diagnosed and medicated has helped wonders, but there’s only so much that medication can accomplish. I’m thankful that mestinon has been helpful for my MG, because other treatments (steroids, immunosuppressants, IVIG, plasmapheresis, thymectomy) are riskier, more invasive, and, according to my current neurologist and online support groups, don’t promise better outcomes—just different side effects. Mestinon helps me avoid daily collapses, but even medicated, I’m always afraid if I overdo it, I’ll risk landing in a full-blown crisis: hospitalized, intubated, or dead. Perfect oxygen levels mean nothing for MG if the diaphragm decides to no longer hold the lungs up and no one catches it in time. Going to more extreme treatments is only really warranted, however, if the mestinon stops working—so I just keep hoping it does its part, in combination with my doing my part, in always walking a tightrope.

As far as treatments go, I did find some lessening of my fibromyalgia symptoms after I underwent therapy and other treatments for ptsd, but it never quite went away. I am doing better today on high dose anti-inflammatories (like curcumin) combined with other pain relievers (Delta, related herbs), and I try to do yoga, slow walks, or swimming when I can—with lots of pauses—but thanks to MG, too, I also have to be wary of overdoing it. Every now and again I’ll try to get my heart rate up, such as in dancing or other aerobics, since I don’t want to die of heart disease either, but this is a much riskier venture, requiring pre- and post- exertion rest. I also take daily digestive enzymes, intermittent OTC meds for my stomach issues (on top of limiting what I eat), and feverfew to prevent migraines/help with cyclical women's issues (cysts, cramps).

Sometimes, other things serve as medicine. I feel like caffeine helps somewhat with pain and energy during the day, but I have to cut myself off after a certain point to prevent sleep disruptions, and there are some days when I'm so exhausted, that it doesn't have as much of an impact. Still, I'm grateful I finally realized that black tea is the key and a possibility—more than a sip of coffee is too strong on my stomach (though I love the smell), and dairy milk for a latte is a no-go (hooray for the non-dairy milk industry boom!) Alcohol also can be helpful, in small occasional doses, to help numb my nerve endings and overstimulation factor—but intoxication always has a crash later for me that is both physical and mental.

It temporarily lets me enjoy parties, concerts, and dance events with less pain and more tolerance for stimuli, but with age, simply cannot tolerate doing it too often. (probably a good thing, for my liver!)

I have intermittently tried many other medications, from prescription to herbal, to try to deal with a myriad of small-but-persistent issues, but I am sensitive to side effects, and thus try to keep things minimal, while also trying to still address everything to make my experience of life as suffering minimized as possible—so I can go get shit done. I like to prevent my body from being a cage as much as I can, and I'm a fan of doing things I find significant in life, handling my business, chasing goal success, and enjoying myself when I can!

Which brings me to the somewhat annoying fact that rest is my next best medicine—in a world that rarely makes space for it, and with a mind that wishes it could always do more. It’s not always a picnic to explain to colleagues, friends, or even myself that I need to take breaks, or that, honestly, if I could just lie down for 20 minutes during festivals or parties or work, I’d have a much better time and be a much better me. If I don’t have to walk as much before the concert, maybe I can do some early show dancing. If I can get a full night sleep, even if that sleep pours late into the morning, my brain can be sharper and my body less in pain. On high activity days, pacing and bench breaks help me do more, even if I eventually crash. Being in areas of less jarring/overpowering [visual, auditory, olfactory, tactile] sensations helps regulate my nervous system. Taking care of myself helps me be a better person in the world. Again, how annoying!

I deal with all of these things as best as I can and I’m way better off, more stable, and less affected than I was before diagnosis and treatment, but they never quite disappear completely. And yet, I don’t like the feeling of being pitied, and I still want to live a full and successful life. It’s always a balance of whether I should be assertive about my needs, or shut up and mask / make more acceptable excuses for things as much as possible to not miss opportunities—even just, at minimum, the chance to live and enjoy life as much as others (or try to, or pretend to).

I appreciate those who have taken the time to try to understand realities that they might not themselves live with, but which affect some of us on a daily basis, especially in a world where others pain is often easily dismissed. I’m also super thankful to past employers that have accommodated me—but it has definitely been an uphill battle to advocate for myself when I’d rather just not be singled out (equally or more so, though when I’m not assertive and then can’t handle the challenges that could have been addressed and accommodated). It is exclusionary and unfortunate that only select organizations seem willing to make minor accommodations to help individuals with health conditions still give their best foot forward. I’ve had varied luck with alternate/flexible schedules, building/task accessibility, and manager understanding—but also felt super grateful and like I did much better when dealt more fortunate hands for such. Disability Pride Month is about celebrating accomplishments by disabled individuals—and it's important to note that those with health conditions can accomplish great things, even if it sometimes involves other methods, time-tables, or needed tools to do such.

I write all of this simply because I do think awareness can help motivate change. It’s only with information at our disposal that we get a clearer picture both of the scientific realities that shape our world and the experiential realities that shape the people in our world. In grad school, I majored in anthropology, which straddled both these truths more than any other academic field I’ve dived into. I still find the need for both to be central to bringing a fully rounded sense of evidence-based research to our institutional policies and procedures, and I still believe that sharing ideas, knowledge, and experience can lead us to build things better for everyone.

Thanks to any and all who read this far. I hope this gives you a better understanding of invisible, chronic, dynamic illness as well as sparks your thoughts on how we can all be more helpful to the goal of reducing suffering for the people you can reach, with whatever power you might have.

In peace,

A. H. Spadafora

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A. H. Spadafora is an author, freelancer, animal lover, and booknerd who lives in the Atlanta area with underused degrees and borrowed cats. She is currently working on multiple manuscripts and juggling gig work while seeking out the right full-time opportunity. With a strong background in the social sciences and humanities, she is particularly enthusiastic about research, creativity, and balancing career with personal well-being. ​Writing has remained the one constant throughout her journey—a passion that has shaped life alongside the search for survival, purpose, and the chance to do good in the world. ​

Eightfold: Zen Poetry for Blindly Clasping Beings is her second book of poetry published. Prior published works include her debut poetry collection, Moments of Peace (2013).​ Her affinity for Buddhism is evident in both of these collections, and likewise shines in her upcoming non-fiction, fantasy, and science fiction works-in-progress. 

Zen Chaos Writing is A. H. Spadafora's publication trade name.