Living with Crohn's Disease During a Pandemic

Last updated: January 2021

Having a chronic, autoimmune disease during a pandemic is... What can I say?

When I became educated on my condition, I of course realized life would be different. I knew there would be things I had to do differently. I knew there would be adjustments that needed to be made. I understood this. I adjusted.

Managing life with a chronic condition

Over the years, life was complicated, but it was do-able. Manageable. I scheduled appointments that other people my age didn't need to. I balanced work and procedures.

I balanced life, love, grief, sadness, and disappointments on top of declining health, insurance, medical bills, HSAs and HRAs, surgeries, prescripts and so much more all under thirty years old. It took patience and education, but I learned.

2020 was different.

No longer feeling like an empowered patient

Last year hit differently. I went from feeling like an empowered patient to starting back at square one. Knowing nothing. Confused. Lost. It was almost as if I was newly diagnosed again.

I felt the same wonder. Can my body withstand this? What should I do? What questions should I ask? There were times when I had a full-blown panic attack. Others, I was oddly at peace. Don’t ask me why / how. Because I have no idea.

Another major thing that happened during the pandemic was the loss of my great grandmother. When she died, I couldn’t really comprehend anything. It was like I was myself, but I was outside of myself.

I couldn’t process any new information and I couldn’t really stand to watch the news or anymore updates on the virus because it only made me feel worse. I lost a lot of sleep, but I tried to stay strong.

Fear, stress, and more around COVID-19

I wanted my body to be as prepared as physically possible in case I did get the virus. Although I feared it either way.

The stress of working through COVID was another story entirely. I went from working on-site to working from home to working on-site and the cycle continued. It was a lot for anyone, but especially for someone with a compromised immune system like myself.

I found myself constantly questioning every ache and pain that showed up in my body. I’ve been tested twice and both were negative. But I still worry. Even with the new vaccine, I worry about my health and safety and that of those around me.

Will people now empathize with the pain of chronic illness?

Everything hasn’t been all bad. The virus did give me a bit of time to think. To heal. I still feel a lot of grief. For myself and for the world. Life, as we’ve always known it to be, is so different now and it's saddening.

I hate that kids have to grow up wearing masks and worry about something even adults don’t fully understand. I hate this pandemic has taken so much from us, but I am grateful for the few things we’ve received in return.

It feels like the world is a little more understanding. Now that everyone is required to social distance, now more than ever people can empathize with the pain of chronic illness. That’s definitely a plus.

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