I was in remission for years from Hidradenitis Suppurativa and then this year happened. And for about a month, I was free of flares until this painful one just popped up. All of the feelings outside of the pain came flooding back. Having an autoimmune or auto-inflammatory disease is hard physically but I think we should be talking about the emotional toll that it has too. This isn’t going to be one of those posts where there is a solution.
The Emotional Toll of Autoimmune Diseases
As I sit here in the most pain I’ve stomached in a while, I can’t help but feel like my body is betraying me again. I feel like this whenever I have a bad flare. I feel like I shouldn’t because we’re in this “celebrate your body” trend but my truth is, I’m so mad at my body.
I want to be a normal, pain-free person navigating the world with her husband and children without wondering when my next flare will cause so much pain that it hurts to sit, stand, lay, and exist. I want to be the fun-loving mom who has energy because I wasn’t just silently battling excruciating pain. I want to be physically available to my husband all the time because, well, I enjoy him.
As I lay in my bed writing this, I’m flinching anytime my son flips around too close to my side where the source of my pain is. And I’m mad because I have to do that.
Dear Body, I’m Really Mad At You
I feel silly saying this but it’s my truth. I’m REALLY mad at my body. I take my probiotics, vitamins, and supplements. There are so many foods and things I don’t eat because I’m intolerant. I love working out. But my body just seems to hate me and doesn’t cooperate.
When I have flares, existing hurts so much. I can’t work out. I’m not supposed to sweat. But doing these things is healthy and helps to reduce inflammation in my body. And then there’s trying to function while in pain. This is what makes me the most upset.
It’s really hard to be your best self when you are just in so much pain. And I hate my growing dependency on ibuprofen.
There’s no resolution to this. But I want others to know that I see you. I get the emotional toll of having an autoimmune disease. You aren’t alone.