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!
