WEGO Health: Tell us about a time when you felt marginalized or stigmatized by someone because of your health condition. Maybe at the time you didn’t speak up, or maybe you did – what did you say or what would you have said to take back control and let them know they were out of line?
I haven’t actually said this to anyone. I have a hard time with confronting people. I really should work on that.
“You need to take better care of yourself.”
Take better care of myself? What the fuck do you think I’m doing? I take my meds like my doctors prescribe. I try to not eat stuff that upsets my stomach. I have a chronic autoimmune disease that I have no control over. I can’t control when I go into a flare. I can’t control when I have bad reactions to medication. My immune system has declared war on my body. How the hell am I supposed to take “better care of myself?”
“Well, you look healthy.”
Just because I look healthy doesn’t mean I feel healthy. If I could show you the inside of my intestines you wouldn’t be saying that to my face. There are days it is a struggle to just get ready and leave the house to go and do what I need to do for the day. Healthy people also don’t shit their pants. Or shit blood. Or shit 10+ times a day. I may not look sick but I feel sick. And telling me that I look healthy marginalizes my disease.
“We need to get you off of these meds.”
These meds, as scary as they are at times, are what is keeping me out of the hospital. It is keeping me from having bloody diarrhea 10+ times a day. It helps with the pain so I don’t feel like I need to scream my lungs out. I need my medication to suppress my immune system so that it’ll stop trying to kill me.
“You’re always sick”
I can’t help that I have a chronic autoimmune disease. So sue me. Or better yet, get your ass out there and find a fucking cure. I can’t help being sick. I don’t want to be sick. I don’t enjoy this. I didn’t ask for it.
“Just be positive”
YOU just be positive after being diagnosed with an incurable autoimmune disease! There are times I’m going to be depressed and telling me to just be positive doesn’t help me.