I'm At Risk, Too: Sharing Our Diagnoses During COVID-19

As the terms “immunocompromised” and “suppressed immune system” flow through social media and news outlets linked to conversations surrounding COVID-19, I have found myself feeling more inclined than ever to share my diagnosis with people who I otherwise would never dream of mentioning it to.

I am at risk too!

In every conversation I hear, people tell me “you don’t have to worry, you're young and healthy. Viruses like this only affect old people.” My initial response is sadness and frustration, I want to scream “I’M AT RISK TOO! WHY DON’T YOU CARE ABOUT PEOPLE LIKE ME?!” I’m realizing that it’s not that they don’t care-it’s honestly just that they don’t know. So, I have been working on tackling the awkwardness and using these conversations as opportunities to educate.

My typical response is something like: “Actually, even though I may look perfectly healthy I have an autoimmune disease called ankylosing spondylitis. I’m on a medication for this disease that suppresses my immune system, so I’m actually just as vulnerable as the old people your talking about.”

This is usually met with an incredibly blank stare, and a conversation halting comment like “Oh my gosh. I’m sorry….”

Don't be sorry, just be aware

But I don’t want anyone to be sorry. I want them to be compassionate to other people’s situations, and to realize that more than just old people are impacted by things like the coronavirus. Even though I look perfectly healthy, I’m at greater risk, and there could be 10 other people in the room at risk without anyone being aware of it. I don’t want to make anyone feel awkward or sorry, I want to help people realize the importance of taking things like the flu and COVID-19 seriously.

“You don’t have to be sorry! I’m happy to talk openly about it and answer questions. I don’t want to make you feel bad or uncomfortable, I just want to help people realize that you could be in contact with people who are considered ‘high risk’ every day and have no idea, so taking appropriate precautions is super important!”

Being open is hard

The tension fades, but I’m still left wondering if what I said will make a difference. At best, I have educated someone new to the reality of the chronic illness community, and maybe protected someone with a weakened immune system like me from getting sick. At worst I’ve had an awkward conversation and life moves on. Being open to talking about my health with co-workers and acquaintances is really hard, but for me, it’s better than sitting in fear and frustration because the people around me genuinely just don’t know.