The Visibility of Invisible Illness
By: Lydia Andrew
She then persisted "how would I feel in a swimsuit when it would be clearly visible." My answer was “no problem, I have my swimsuit for ileostomy."
I have an unusual combination of auto-immune diseases, Ulcerative Colitis and Type 1 Diabetes (with a third now pending!). Both of these are usually invisible illnesses, but in my case, they have resulted in the necessity for three pieces of medical equipment attached to my body. Individually, they are noticeable, but together they make quite a statement on a relatively small person.
The first is an ileostomy bag as a result of UC, those of you who know me will be familiar with this. The second is a circular disc called a FreeStyle Libre, a sensor for my diabetes that tells me my blood glucose levels therefore decreasing the need for constant finger pricking. The third is a rectangular box called an Omnipod, an insulin pump that mimics a pancreas by drip feeding insulin, avoiding the need for daily multiple injections. My medical diabetes team is unfamiliar with this combination of conflicting auto-immune diseases; having a high output ileostomy requires a low residue diet, salty crisps and marshmallows, which in turn require more insulin. This is not a problem until it comes to doing a carb free meal and fibrous foods are suggested, making life a little difficult! It’s all a balancing act, which illness needs what and how much I’m willing to compensate with how the other reacts.There is no precedent for this in my hospital or the region I live in, so in order to make my life easier my team have willingly fast tracked my diabetes technology/gadgets to help with getting my blood glucose levels in range faster.
When considering the pump, I was recently asked by a fellow T1 if I would be "bothered" by others being able to see it through my clothing, my answer was no…she then persisted, how would I feel in a swimsuit when it would be clearly visible. My answer was “no problem, I have my swimsuit for ileostomy."
At the end of the day it has to be other people’s perception of beauty that needs to move on.
The difficulty for me of course lies in the false ideals of perfection. More medical equipment on display leads to potentially more people looking, more curiosity, more questions raised…And so the internal battle begins: my sixteen year old self pops up, feeling defensive and self-conscious, questioning what is attractive, whereas the 24 year old me is constantly trying to put it all in perspective and reason with the turmoil. I guess what is irritating is simply the thought of being judged by others, but so far this hasn’t proven to be the case.
At the end of the day this tech is visible to some degree or another, but it’s designed to keep me healthy and alive. I choose to embrace it, accessorize and promote it, by wearing clothes that make me feel considered and confident to present the best version of myself that I can.