As someone who has long identified
as having an invisible disability, and having served as an effective
self-advocate in the past, I did not anticipate that returning to college with
an “invisible disability gone visible” would be so difficult. Although I have
worked to try to keep my identity separate from my disabilities, some of my
physical and cognitive limitations end up shaping everything I do, both
consciously and unconsciously. For example, as a result of my difficulties with
auditory processing, I tend to take notes on the computer, which sometimes has
differentiated me from other students, particularly in courses that don’t allow
computers. It is something that I know works best for my style of learning, and
my “go-to” notetaking method. But outside of classroom situations, my auditory
processing problems generally remained invisible, as well as my physical health
conditions.
However,
as my Mast Cell Activation Syndrome has progressed, and now require around the
clock intravenous treatments, my disability is not only visible, but
pronounced. Most individuals, especially twenty-one year olds, don’t walk around
with a pump that clicks every two minutes. Nor do they have facial rounding,
bruising, tremors, and all of the other side effects which come as side effects
of the steroids and other medications that I am on. Initially, this took some
getting used to even around the house and my family, but returning to school, I
am more conscious than ever of the effects of my condition and its associated
treatments. I am constantly aware that I am different from “the norm,” and not
able bodied. Although it is rare for this to be stated to me explicitly, the
stares, pity glances, and silence that consumes a room when I walk in is
telling enough.
I
suppose that I am more conscious of other individuals’ behavior changes because
my disability was one somewhat invisible. I was fortunate enough to be “invisibly
disabled” for most of my life, up until getting sick in college. Reflecting
upon this idea, I wonder how individuals who are visibly disabled from birth
cope with others noticing their differences. Do they also feel self-conscious
about it constantly, or is that something that is “the norm” for them? I
believe that young women in particular suffer the most from the problems
associated with being “invisibly disabled.” Something that I have experienced
personally and seen in many of my peers is the assumption that any physical
symptoms is psychosomatic until proven otherwise. I do believe that there is a
deep connection between the mind and the body, which creates a constant
feedback loop, but it is important to differentiate correlation and causation.
Just because someone has an anxiety disorder doesn’t mean that their pain or
nausea is simply from nerves, and can be cured from “just calming down.”
Although anxiety may be a contributing element of their physical symptoms (and
sometimes the cause of it), doesn’t mean that one should assume that it is
psychological.
A
saying that I have heard from others in the chronically ill community (which is
particularly strong online), is that doctors are told in medical school a quote
coined by Dr. Theodore Woodward, “when you hear you hear hoof beats, think of
horses, not Zebras” (1940). However, from someone who is a zebra, and was
labeled as a horse for most of my life, I think that it is critical for medical
professionals to think of horses, but also keep in mind that zebras are out
there.
References
Sanchez, A. (2012, November 13). When you hear hoofbeats,
don't think zebras. Retrieved from
https://www.digitalistmag.com/lob/sales-marketing/2012/12/06/when-you-hear-hoofbeats-dont-think-zebras-022309
