I just feel as if family/friends/significant others don't understand when you say you aren't feeling good. I don't want to even admit out loud that I am in pain because I feel like they think I'm trying to get out of something or making excuses. Does anyone else ever feel this way?
I'm dealing with the same thing here. I used to be so outgoing & the life of the party, but now all I want to do is stay home. Away from the judgements & criticism. I've told my family/friends about my RA, but it seems like they just don't believe it's as bad as I'm describing it. Like I'm being a baby or over exaggerating this disease. They tease me, lose patience with me, & stopped talking to me altogether. The one thing doctors don't tell you is how lonely this disease is...
I have a very supportive family. My husband and most of my closest friends are all nurses so they understand what we go through. I push myself to help and be included to the point my husband and friends will get after me to rest.
They don't make me feel bad but I myself feel as though I am letting everyone down if I don't pull my own weight. As a result I often over do and suffer for any where from one day to many because of it. I have a hard time pacing myself. I also have a little ocd and am very particular how I want things done. I am getting better though. While my husband tries to help me with the house , he does always do it as I would and I have learned to be appreciative that he did it for me and not worry how he did it.
I had to show my family a youtube video from the head person of North America Medical Immunology from Sanofi and some of my family didn't realize that RA doesn't just attack joints that your Immune system also will attack other internal organs like your heart, lungs, nervous system, cervical spine upper part of the neck, if you along time unchecked by a Rheumatologist and it's a complex autoimmune disease that scientist still don't understand quite yet
I always feel like a weak person when I have to just back out from doing things or say I can't do things because I know the end result will make me sick for the next day or two. I use to try to tell people the disease I have and why I can't do things, like hang out till midnight or drink when we are out and shots and why sometime I just sat there. I don't feel well and I have always done my best to keep up but just can't do it. So don't let yourself feel bad for making choices to keep you healthy. I have made enough wrong ones for the both of us.
I think no one truly understand this disease unless they have it. People understand more what they can see. RA is a lot of invisible pain. We feel it but no one can see it until the joints get sooo visibly noticed as abnormality. We just take one day at a time doing the best each one of us can. :)