One of the annoying things about having an invisible illness is that people don’t see that you’re sick. While this does allow me to blend into the crowd and not stand out (which I recognize comes with quite a few perks), it also means that it’s easy for people to invalidate my experiences. It’s astounding to me how often people think I’m “making it up” or “being dramatic”. With an illness you can see, people often validate that, but with an illness you can’t see, people can easily tear you down. It’s frustrating to fight so hard to try to live well, only to have people around you doubt you, make fun of you, or tear you down as a result of your diagnosis.
It’s easy for friends and family of those who have a chronic illness to forget about it. When people look at me, I look like a very healthy and upbeat woman. While I am upbeat, people don’t see the aches I feel daily (bad enough it feels like I have the flu almost constantly), the migraines, the rapidly changing blood pressure, the stomach pains, or the dizziness I feel when I stand too long in one place (and by “too long”, I mean more than about 3-4 minutes). I do things constantly throughout the day to help manage my POTS, and that’s exhausting. So, whether I do or do not “look sick” in any given hour or day, I do, in fact, have a chronic illness that I deal with daily.
I am a face of chronic illness.
(Celebrating as I cross the line of my latest half marathon, setting a new PR of 2:30! Most people would never know I have a chronic illness)
For those of you who have ended up here because you also have POTS or another chronic illness, let me join with you and say “I understand”. I understand how frustrating it is when people say “but you don’t look sick” or invalidate your experiences or your illness. For those of you who have landed here because you’re trying to better understand life with a chronic illness, please know that the statement “but you don’t look sick” isn’t helpful. Everyone responds differently, but most people are frustrated with the statement. Instead- validate our internal experiences. Ask questions as you seek to understand. Regardless, know that there are many faces to illnesses. You don’t have to “look sick” to be sick.
To learn more about POTS and my life with chronic illness, check out my POTS page.