I'm Not Invisible, But My Illness Is
When Heather first started this blog, she made a post about the people that inspire her to keep fighting.. I was flattered to be included among those people. She made a comment though that's been nagging me: "She has not once let her conditions let her down. I want to be more like her, and pretend my condition doesn't effect me." First, I had to consider if I really do act like this, and then, whether or not that's a good thing. Neither was easy to do. I don't like to talk about my chronic, invisible illnesses publicly, and this is certainly the first time I've ever blogged about it.
Approximately seven years ago (I was 16 thereabouts), after a year and half of a multiplicity of doctors and tests, a rheumatologist diagnosed me with Ehlers-Danlos Syndrome and fibromyalgia. While there is no cure for either, within the last few years they've developed drugs to help people manage their fibromyalgia (none I've tried, however, have worked for me). Most doctors have never heard of EDS, or only had a brief reading on it in medical school; some doctors still don't believe fibromyalgia is real.
Ehlers-Danlos Syndrome (EDS) is a connective tissue disorder, which in the most basic sense, is caused by a genetic defect in the collagen. And if you remember anything from basic biology, collagen holds your entire body (joints, skin, organs, etc.) together. As of now, there are 10 identifiable types of EDS; the most common type, which I've been diagnosed with, is Type III (Hypermobility). The two most common characteristics are hyperelasticity of the skin (i.e. extra stretchy) and hypermobility of the joints (i.e. joints hyperextend, which may lead to frequent dislocation, depending on the severity of the disorder). In addition, I suffer from chronic joint and muscle pain and fatigue, and on-again off-again gastroparesis and acid reflux. (Wikipedia has an accurately wide range of other potential symptoms here.) When I walk, sometimes my knees will hyperextend too far backward, and when I was younger, I frequently rolled and sprained my ankles. I go through phases where my fingers and wrists lose their strength and I have difficulty gripping things like doorknobs and pencils. I bruise easily; cuts/breaks in my skin take significantly longer to heal and often scar.
Fibromyalgia's cause is not known, but can most easily be described as hypersensitivity and overactive nerves. In my particular case, the doctor who diagnosed me believes that my fibromyalgia was triggered by my lack of sleep from the EDS. The more tired I become, the more I hurt, and the more that I hurt, the more difficult it is to sleep. For me, the most noticeable symptoms aside from fatigue are joint pain/stiffness, muscle pain (more of a burning than the EDS pain), hypersensitivity to touch and sound, and brain fog. On some days every sound is painfully intensified and sharp and my skin feels bruise. My bag bumping against my leg can feel like an aluminum baseball bat, and I often can't wear certain fabrics or clothes because they itch or burn. Brain fog makes it difficult to concentrate and often will impair my language comprehension, which can be problematic professionally and personally.
EDS and fibro, among many other illnesses, are often called invisible because you can't tell just by looking at a person that they're ill. The common reaction by others is, "Funny, you don't look sick." This can lead to comments about hypochondria, weakness, and laziness—all of which I was on the receiving end of frequently in high school before and after diagnosis. Teachers were fed up with my frequent absences, and I had a classmate and friend tell me it was all in my head. These days, I'm able to manage the symptoms much better (knowing the causes, able to have a more flexible schedule with my academics and work, and knowing my limits), but that doesn't mean I don't experience or suffer from them.
As the title states, I'm not invisible: During my undergrad, I was regularly involved on campus as the editor-in-chief of the student-run literary magazine and senior editor of the student-run publishing company; at graduate school I take classes and teach two sections (25 students per section) of first year composition; I'm active in the global English-language haikai community, and in my free time I put together collaborative poetry collections on my blog. On the side, I occasionally will do a freelance editing or typesetting job. Despite the fibro and EDS, I keep active; however, this also means I have little energy left for what most would call a normal social life.
I'm naturally an introvert and a little antisocial, but I think my chronic illness has heightened this. It's easier to let people (aside from some of my closest friends) think I'm that way than to try to explain that at the end of the day I'm too tired to do anything and that I often spend the weekends recovering from the week (or the summer to recover from the semester). These days, I can be part of a conversation and others will make plans with each other without so much as asking if I'm interested. They know I don't go out; they know I'll say no. In some ways, I'm okay with that, but I won't deny it stings and often makes me feel like an outsider.
The alternative is to explain why I don't go out, and people look at me blankly and nod; it's clear they don't understand, or think that I just need to do x, y, and z and that will somehow fix me. (For example, the biggest misunderstanding most people have about chronic fatigue is that those suffering from it simply just need to sleep more.) If I emphasize it too much, then people may assume I'm too weak to do anything and not take me seriously. In high school, this resulted in several opportunities I'd worked relentlessly for were taken away from me. After, I made it a point to keep my condition under wraps as much as possible as a way to protect myself, because I felt like it was myself against the world. I was terrified to tell people during my undergraduate studies there was something wrong with me. It wasn't until the last couple months before graduation I openly spoke about it. Even then I didn't say too much other than I was struggling to get everything done which no one really paid attention to because it was the end of the semester and everyone was busy.
Because I don't advertise it, it also leaves me conflicted when I have to ask for help. I've only asked for an extension/modification on an assignment twice in which case I had to explain my illness, and both times I was worried that it would seem like I was taking advantage of or cashing in on my diagnosis because I was just then talking about it. Fortunately, neither time resulted in such assumptions (as far as I could tell). Other times when I've brought it up, others think it must not be so bad because I make it to school/work on a daily basis and still manage to do things on the side. In the end, I typically feel something along the lines of: I get my work done; I can walk, drive, and carry on a normal conversation 95% of the time; people think I'm a little odd, but that's just my personality; I know I'm far better off than a lot of people; why should I bother anyone?
It's because my condition is invisible that it's easier sometimes to pretend it doesn't exist or affect me. However, I'm not sure it's entirely healthy. I refuse to let it get me down, but that will also make me push my limits more than I should, which can lead to physical and mental crashes. I sincerely believe my chronic illnesses give me as much strength as they do weakness. The world is a competitive place, and waits for no one (especially those less genetically equipped for the daily grind), so I have to have twice as much drive to not only keep up, but overcome and succeed. Anyone who wants to succeed, chronic illness/difability or not, has to make sacrifices. For me, one of the sacrifices been being open about my chronic illness; I'm not always sure it's been the right decision. On the one hand, I'm fortunate in that I can make the choice to decide how people want to see me, but on the other, I deny myself a chance to come to terms with it personally.
I've been blessed over the last couple years to come in contact with other artists and poets who have similar conditions, and their willingness to be open about it is helping me little by little speak about it without fear or anxiety. In some ways, I may have also just needed to prove to myself that I can succeed in life before confronting my own difabilities.
This all only scratches the surface in how EDS and fibro affect me physically and mentally. I've never really found the right words (I've suppressed it for so long, it's difficult to dredge it back up), but Toni Bernhard has pretty much hit it on the nail. For more about life with invisible illness, read The Challenges of Living with Invisible Pain or Illness.Although I've read multiple blogs and articles by those with similar conditions, Bernhard best puts it how I feel, and touches on both those with invisible illness and their caregivers.
About the Author: Academic by day and haiku poet by night, Aubrie Cox is a native to the Midwest, USA. She received her B.A. in literature and writing from Millikin University in 2011, and is currently pursuing an M.A. in creative writing at Ball State University. Her micropoetry has appeared in print and online journals including Modern Haiku, Eucalypt, and A Hundred Gourds. Her first haiku collection tea's aftertaste was published by Bronze Man Books in 2011. Aubrie regularly blogs and publishes collaborative e-collections at Yay Words!