[a moment] of hurt

 

[moment 108]

One of the most painful things about living with chronic illnesses and chronic pain is the hurt of not being believed.

I admit that I do lie frequently about my health - I say that I'm ok or good or something similar when I am not; I say that your ableist decisions are OK when they're not ... or I just ignore them ... because I don't have the energy to educate you; I put the best spin on my health on social media and in conversations because I don't want to bring others - or myself - down. 

But when I say I am not OK, I mean it. When I say I cannot do this or am going through this or and struggling with these symptoms or side effects right now, I am telling the truth. When I'm not believed by people who claim they care about me, I feel betrayed.

Most people with chronic illnesses have spent years if not decades having doctors dismiss symptoms, tell them it's all in their minds, and/or otherwise not take them seriously. 

I was told my joint issues were growing pains throughout my childhood and well past when I stopped growing. I was told my exhaustion was due to one of a variety of factors and my sleep issues were due to anxiety. Some doctors explained away my symptoms as symptoms of being overweight. I was given pain medication and steroids, which only masked what was really going on and which made me more ill in the end.

Right now I am very sick. As I sit here writing this, I struggle to retrieve words. I have to backspace and retype a lot because my left hand isn't cooperating. And I know if I spell out everything I'm dealing with and experiencing medically, I won't be believed. I live with the trauma of not being believed by medical professionals, friends, even family every day.