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Living with a Chronic Illness during a Pandemic

Name Withheld

From a very young age, I learned that I am different from my other children. I spent my childhood being pulled from school early to go to the hospital for appointments. Bloodwork, MRIs and IVs became second nature. Passing out during dance class was a regular occurrence. I have been taking public transit to the Children’s Hospital of Philadelphia by myself since I was 13. I had to start swallowing pills as early as I could to take medication. I have been described by multiple doctors as a “medical mystery.” 

I am now 20 years old and still very ill. I am immunocompromised, but many people do not believe me because of my age. Struggling with these illnesses have caused many issues during the current pandemic.

I, and many other young people with chronic illnesses, do not look sick. So it is very easy for me to written off as overdramatic or selfish when taking precautions. My local grocery store has set aside an hour each morning so anyone who is at higher risk may come and shop safely. When I went there during this allotted time to get groceries for my mother, who is a nurse, and me, I was met with criticism. Other shoppers, the majority of whom were much older, glared at me as I tried to keep my head down. The checkout lady reminded me that this hour was only for immunocompromised shoppers. When I told her about my illnesses, I was met with a very rude, “Oh … I guess that counts…” Yes, it counts.   

Coping with this has been difficult. I could have quarantined with my dad and brother in Tennessee, where I would much rather be, but planes were out of the question for me. My mother has to sanitize every surface she uses after each time she uses it, and I am forced to spend most of my time in my room. FaceTime calls have made it a little bit easier, but it is still difficult. I am trying to do everything I can to fill my time, but sometimes it’s hard to want to do anything.  

It is hard to offer others advice. All any of us can do is try to stay connected with our loved ones and keep our heads up. It is a terrible situation, but it will end. Call anyone you know who is quarantining alone and keep them company for a little while. Phone calls with friends is a great way to feel productive and feel connected to loved ones when you cannot be with them. Pick up that hobby you have always wanted to try.  

Recently I baked bread for the first time! But also, know that this is about safety, not productivity. The most important thing is to take care of yourself. Stay safe, stay inside and please, do not make assumptions about people’s situations. 

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