Above everything else, with my disease, I am anonymous (or anony-mouse.. as this seems to be my “sick spirit animal” as featured in another post). I feel that if people were to know about my disease and how weak and sick I sometimes feel, I would be viewed and judged as “broken”.
This train of thought brings up a question that I have seen asked many times in the chronic illness community: Would you rather your illness be visible or invisible?
I see many different answers to this question, but the one that seems to be most common is: No, I do not want my illness to be visible.
You see, there is a catch-22 with this question. Having a visible illness means multiple things. You are clearly sick. Which means you are not faking it. No one will accuse you of being a hypochondriac or over-exaggerating your symptoms. While doctors may not know/understand what’s wrong with you, they probably will not say that it is all in your head. But then, on the opposite hand, everyone knows you are sick and they will make many assumptions based on that fact. With a visible disease, you are at the mercy of how people feel they should treat you instead of how you want to be treated. With a visible disease, you can never escape your reality. There is no hiding from your disease or hiding the disease.
And that’s the downside of a visible disease. There are many of my symptoms which are viewed as, at the very least, awkward, and at the most extreme? Disgusting or shameful. Like today, for instance, I went to the bathroom (already uncomfortable?) and when wiping noticed a bright read streak. I looked in the toilet bowl and saw drops of blood floating in it. There are some aspects of any disease which are found to be embarrassing or awkward. This is part of the negative stigma associated with disease.
Much more harmful, however, is that all too often, if someone views you as having something physically wrong, they will often assume that you also have something mentally wrong. So as soon as you present with an illness, your intelligence is questioned.
Working towards a PhD in molecular biology is a demanding and competitive field and I am terrified that any hint of my not being capable of doing something will mean an automatic disqualification from even trying. I am afraid that the strain of working towards a PhD will make my invisible illness more visible. If this does happen, I’m very afraid of how my advisor and fellow classmates will view me.
There may be a day when I am confident enough in my own abilities to not care how others may view my capabilities, but till then, I plan on being anony-mouse.