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Why You Can't Always Avoid Disclosing Your Illness to Others

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One of the greatest challenges I have faced as someone with a chronic illness is the question of when and how to tell people that I have health issues.

When I was initially diagnosed with a suppressed immune system (common variable immune deficiency, or CVID), it was a question of my safety. I was in high school, and had to tell my teachers and classmates that my immune system was compromised so that we could reduce my exposure to germs and ensure that I was safe while at school. I was fortunate enough to go to a smaller high school that took medical conditions relatively seriously, so sharing that information wasn’t uncomfortable for me. My teachers and peers were accepting and asked intelligent questions. I assumed that that would be my experience across the board.

However, I was wrong.

I’m sure many of us have experienced ignorant or offensive comments with regards to revealing a chronic condition or disability. From ill informed opinions to dehumanizing questions and doubt, people can be cruel. It’s not always intentional, but it does create a certain sense of fear around discussing your condition with new people.

With time (and negative reactions) I began to fear telling people that I had medical issues and special requirements in certain situations. It impacted my performance in school, since I was hesitant to tell professors that I missed class due to medical appointments or flares. It influenced my social life, since I began to prefer not going to parties or hanging out with friends over explaining that I couldn’t drink alcohol due to my medication, or that I got tired easily and couldn’t fully participate in an activity they were planning.

I went from being very comfortable existing as a chronically ill person in the world to being comfortable with my illness– as long as I was by myself. I am not ashamed of my diagnosis, but I do fear how people will react.

Which begs the question: Do we have an obligation to disclose medical conditions?

Obviously there are some situations where it is vital, and it’s an issue of safety, like for example getting accommodations in school or the workplace. If you live with someone (whether it be family, friends, roommates, etc.) then it’s pretty hard to hide your illness, and why should you want to?

There are also times when it’s nice to be able to openly discuss your medical conditions and your feelings about it, whether it be with friends, family members or a significant other, and presumably the people in your life will be curious about your struggles and want to be able to provide support.

I’ve always been very open about my health with the people I’m closest to. Anyone who knew me before I was diagnosed with CVID in 2010 was well aware that I wasn’t healthy simply due to the sheer number of pneumonias I contracted within the space of each year.

Moving into my life post diagnosis, while I was (and still am) receiving regular infusions of blood plasma to supplement my immune system and prevent infections, the hallmarks of a suppressed immune system were no longer obvious. I had fewer infections, missed less school, and was able to manage most of my symptoms with medication, which meant that new people I met didn’t have any clues as to the fact that I am not technically “healthy.” Introducing the concept of my disease was wholly my responsibility.

When I first started university I made the decision that I was going to keep my medical history to myself. While I loved the support of some of my friends from high school, the negative reactions unfortunately overshadowed the positive ones, leading me to hide my disease.

I don’t think that having a chronic illness, disability or medical condition of any form is something to be ashamed of. There is no reason why you shouldn’t accept every aspect of who you are and what your body is, and live your life regardless. However, I was struggling with the limitations my illness imposed on me, and had decided that if I didn’t acknowledge my illness to this new group of friends, those limitations would be easier to surpass.

Three weeks into my first semester of my freshman year of university, I had been admitted to the local hospital with a pneumonia and was scrambling to contact my professors with medical documentation to excuse my absences from labs and get extensions on essays. I was also struggling to draft texts to explain my disappearance to my friends from my residence hall, and ended up just sending a group text that said, “In the hospital. I have a suppressed immune system. Nothing new, no worries! Just pneumonia.”

Needless to say, everyone was frustrated that I hadn’t been open about my condition to begin with.

I understand that not everyone is in a position where hiding your medical condition is even possible, or in situations where disclosing your medical condition will get a positive and supportive response.

That being said, for visibility and representation purposes as well as your own happiness, I think that honesty is always the best policy.

No one wants to be identified by their medical condition, and I understand wanting to form strong relationships based on who you are as a person rather than what your body doesn’t do correctly. Still, I believe that if we want to continue working towards a more accepting and tolerant world, we need to be willing to be totally open.

Originally published: March 6, 2018
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