How I know if someone has really crossed a boundary is if I just can’t stop seething about it. Unfortunately, in this case, I’m reminded every time I try and open our stupid door knobs , when I pick up something and it takes forever, when I can’t sleep because every joint hurts, when I wake up and I just know it’s a high pain day. When I dread getting in the car because I know it’s going to be painful. When I struggle to weed vinyl for orders in my shop Etc etc.
When someone who doesn’t know what it’s like to be in this body decides that they know better, I get really angry. Just because you can’t see it doesn’t mean it isn’t hard. I’m trying so hard to live my life the way I’d like it to be, trying so my boys don’t miss out to much. I’m doing my best to not let this condition snuff out all the colour in my life. I’m not going to lie, some days are harder than others.
I just maybe expect a bit more empathy from specialists.
Is that too much to expect?
I had a weird appointment last week where a new rheumatologist I hadn’t met before told me my joints weren’t that bad. To clarify, he was a nice enough person and wasn’t trying to be mean but I must say I left feeling deflated.
I can’t seem to let it go either. I suppose because to me it’s painful and it is a huge deal. To me not being able to wear my wedding ring anymore after 9 years sucks. To me going down/ up the stairs is painful & tiring. Not being able to have baths only showers.
I guess he sees more aggressive forms of the disease but it doesn’t negate my pain or the impact it has on my life.