Even after having this disease 17+ years I can't find words for people. Maybe I'm tired of saying the same things over and over like a broken record. Like most everyone on here, I'm in pain 24/7. It NEVER goes away or stops. The only thing that may change is the degree of pain, where it is at and movement. I tell people constantly I dont feel well and have to cancel. I know people are sick of hearing I NEVER feel well or I am not making it… read more
I have been telling my family that I have Rheumatoid arthritis disease. I have a sister-in-law who is a nurse so that helps, she was able to explain to my brother and her children what the disease is. My other brother and sister-in-law have asked questions about it and I have told them everything I know about it. It sank in to them when I left my niece's wedding reception early because I was exhausted from going to the party the night before and the wedding in the morning and going out to lunch with the group before the reception. But I tell people I have RA disease or Rheumatoid disease and I leave out the arthritis part of it.
Boy, the only thing say to you is be strong! All the people that you are tired of explaining too, no one will understand unless they have the painful joints,stiffness, aches and pains! Do whatever it is that helps you the most, and forget explaining to anyone!! Focus on helping yourself so you can remain being as positive as possible for the people you care about most!!
I’m kinda cut different, so I just open my mouth and words fall out. It doesn’t matter much to me what people think, for we can only push our body so hard before it just lays down on us. If we push to hard today it takes us days to get over it. So I feel your pain. I don’t want to be laid up for a week just to make someone happy today. Try that.
I agree that we are more misunderstood because it has arthritis in the name.
First off LiaVila, you're going on biologics. You're not exposed to viruses, it's an autoimmune disease and you're suceptible to catching things much easier than others. You need to keep up on your flu & pneumonia vaccines, especially if you work in health care. Stop worrying @ your treatment. There is a good article in the Q & A section on this site. It tells you @ each type of commonly used medications.
Back to people understanding this disease, you can only do what you can & let it go. But you also can't decline EVERY INVITATION just because you hurt. If you're asked to go rock climbing, that's one thing but to eat or to visit someone, work thru it!!!! Hate me if you want but you can't lay there & say " Oh, I hurt"! GO!!!! You don't have to stay long but go. Talk to them, let them know your limitations & work with it!!! Don't let this disease make you home bound. Don't let it define you. Rest when you can, do what you can & press on. Get up, dress up & show up!!! You WILL have pain to some degree for th rest of your life. Go while you can!!!
I've had RA for 10+ yrs & I know first hand how crippling it can be. My fingers & toes are deformed & it's already attacking my lungs. I qualify & know how you feel. Push through it. Push hard & show up. Cut back work if you can. Make adjustments but push through. Exercise even if it's only in a pool. You have to for your body & your sanity.
God bless us all.