Please Don't Make Small Talk About My Chronic Illness

Do you ever feel alone around people when you’ve undergone some kind of major medical trauma? I remember this strange sense of isolation when I returned to school the summer after my open-heart surgery when I was 14. Something in me changed. I was not the same girl I was before. Although at the time I didn’t realize it, I struggled with complex post-traumatic stress disorder. This caused many issues throughout my teens and into adulthood.

I recently had my third open-heart surgery three months ago. I thought I was fine during my time off work. I kept myself busy. Although I was by myself most of the time, I kind of liked it. I enjoyed writing and doing the things I wanted to do. There were times I wish my friends would make the effort and see me, but the thought didn’t overwhelm me. Last week was my first week back to work since my surgery, and that feeling of isolation I had when I was 14 came flooding back.

Why was I feeling this way? It took me a while to understand. It was all of the people asking me and telling me I looked great. Them asking me in passing how I’m doing, expecting me to say “great,” because I’m back and what else would I say. When I say “well, I’m still hurting” or something similar, I would get in response “well, glad you’re back” or “it will take some time.”

You might think I’m being harsh, but I challenge you to think about your chronic illness friends. To think about trauma and isolation. When you ask questions in passing or aren’t really wanting to know someone’s pain of what they are going through, it can isolate them and cause harm. I would rather someone not even acknowledge my illness then make small talk about it. Because it’s not small talk to me.

Invisible illness is funny like that. You can’t see my scar. You can’t see what I’ve gone through. It’s forgotten — the pain, the trauma I’ve been through. When I’m alone I can deal with it. But it makes it harder when I must go through the whole day masking, on top of being reminded of trauma and having to gloss over details, so I can answer to my co-workers that “I’m doing great!” I remember why that 14-year-old girl stopped talking about her feelings, I remember why she held all her pain inside and then took it out in unhealthy ways. I remember how isolated I was and how isolated I feel now.

It’s fine if you don’t know me, maybe you feel uncomfortable talking about sickness. But I challenge you to ask questions. Get uncomfortable because I have no problem talking and sharing my life, because it’s a miracle and sharing helps me survive.

I know this feeling won’t last and I find comfort in my family to talk to and my writing. I’m so thankful for this online community as well. Because in truth there are so many of us who feel alone. But this community is proof that we aren’t.