4 Downfalls of Hiding My Primary Immunodeficiency


When I was diagnosed with a primary immunodeficiency seven years ago, I made it my goal and mission to live as “normal” of a life as possible. And what that meant at the time was hiding my illness and its daily effects to almost all with whom I interacted. At the time, hiding my illness and its effects seemed to help me avoid explanations and sympathy and prevent me from using it as an excuse to keep from working hard. Through the past years, I found that hiding my illness was a large source of fear, anxiety and insecurity and truly isolated me from others. Although hiding my illness was also unhealthy, it proved to have these major downfalls as well.

1. Normal Expectations

Although I always push myself to achieve all that I would be able to without a chronic illness, the harsh reality is that there are times my body is not physically capable at the moment of achieving these expectations. While I am hiding my illness, I have no access to accommodations or modifications if I am physically not able to do something. Even though hiding my illness allowed me to seem like an average teenager to many, it required me to push myself to the physical capabilities of my peers and classmates without a chronic illness, often causing me to become sicker.

2. The Shock of My Chronic Illness

To many, I appear an over-scheduled and over-achieving teenager who is juggling multiple AP and college classes, extracurriculars and athletics and who seems to have more infections than others. If the situation arises that I have to tell someone about my chronic illness, it often entails more explaining and questioning than normal due to the fact that I seem so healthy and happy on the outside. This is often followed by many questions and sympathy and regret for what they may have said. This oftentimes leads to a very awkward situation where I feel like I need to apologize for needing to tell them under such awkward circumstances. This leads to the next downfall.

3. The Confinement of My Illness

When nobody knew about my illness, I felt even more isolated from support. With only a few of my friends knowing, I had a very small support network and I was not able to take advantage of others’ support and experiences because I did not give them the opportunity to do so. After being more open about my illness, I have been able to take fuller advantage of the support network I already had available to me.

4. Constant Lies

Regardless if I tell others about my illness, I am still affected by the symptoms of my illness. When I was affected by these symptoms, I was often forced to make up excuses or situations to cover for my chronic illness. Although I thought I was very believable, my stories often did not add up, causing others to believe I was making up all of my symptoms, as well as my causes.

Chronic illness affects every individual differently, but I think it is important to realize that your chronic illness is an important part of who you are and a big part of your life. Even though it may be hard to realize now, I believe hiding your illness can truly cause more fear and anxiety than sharing the truths of your chronic illness with others.

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