Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
After reading another post (15 Things NOT to say...) it made me think of something. Sometimes if I tell someone I have RA , it ends up in a strange kind of contest....like they say "I have it, too and I can still...." or my aunt has it , or "look at MY hands !" any number of statements if said a certain way makes me immediately feel defensive , BUT at the same time I don't want to get into a "contest" of "who has it worse"...I mean nobody 'wins' , right? lol But it happens all the time ; in a conversation it can quickly go out of control and head toward that defensive mode or the comparison mode as I try to "prove" I really do have it, yes at MY age and yes I eat right and yes the meds are scary.
So on one hand I don't like to tell most people I have it. So that I don't get into that typical frustrating conversation where I have to explain why I have it or why I need steroids.
But on the OTHER hand I often feel it needs to be told ....I feel like if I don't say it maybe they will think I am drunk when I lumber down the street as I try to keep up with walking every day but now have a bad limp..or why in the shared laundry room with my neighbors, I wince when I lift the lid of the washing machine , and need a chair to set my basket on (i have so many things I do differently to make it a bit easier) or why when I have finished my laundry I have to "recover" for a day .....
I don't want to "be my illness" or have RA define who I am.
BUT being newly diagnosed it really is all I can think about right now. It is ever present in my mind. Not that I want it to be but I have to sort it all out & process it.
I come from a long line of sturdy, hard working people who would NEVER understand how unable to function normally , I am.
In my family to be less than functional is a sin.
So this is why I have DS to come to..
I know people have worse things; I have a friend now who has cancer of the lungs. There is no comparison. But something like arthritis , before my hands get more crooked, there are no outward signs and I am sure you all have experience with people saying things that really mean "you don't LOOK sick".
How to talk about it and approach such people (some of them family and much loved) with dignity and not defensive tactics?
peace
So on one hand I don't like to tell most people I have it. So that I don't get into that typical frustrating conversation where I have to explain why I have it or why I need steroids.
But on the OTHER hand I often feel it needs to be told ....I feel like if I don't say it maybe they will think I am drunk when I lumber down the street as I try to keep up with walking every day but now have a bad limp..or why in the shared laundry room with my neighbors, I wince when I lift the lid of the washing machine , and need a chair to set my basket on (i have so many things I do differently to make it a bit easier) or why when I have finished my laundry I have to "recover" for a day .....
I don't want to "be my illness" or have RA define who I am.
BUT being newly diagnosed it really is all I can think about right now. It is ever present in my mind. Not that I want it to be but I have to sort it all out & process it.
I come from a long line of sturdy, hard working people who would NEVER understand how unable to function normally , I am.
In my family to be less than functional is a sin.
So this is why I have DS to come to..
I know people have worse things; I have a friend now who has cancer of the lungs. There is no comparison. But something like arthritis , before my hands get more crooked, there are no outward signs and I am sure you all have experience with people saying things that really mean "you don't LOOK sick".
How to talk about it and approach such people (some of them family and much loved) with dignity and not defensive tactics?
peace
Peace be with you! I am new to this group but have been out in the community with friends and family for many years. I understand how you are feeling! My family still has a hard time understanding I have good days and bad days. I have even giving them all the information I have read in hopes it would help us all. They still seem to forget sometimes.
It has now been years I have been sick and working with Dr.s to get back to a more active life. I know I will be better again soon. I have to distress my life again! Sometimes I allow people who are drama lamas to come into my life and tell me how and what I needed to do. Well, what I need to do is to stop worrying about them and what they think they know. Family and what others think can make me think i am nuts sometimes. This is hard!!!!
You take the time you need to do what is best for you!!! Never stop thinking about this, it is now part of who you are:( You can feel good and do well, it just might tack sometime to see what works best for you. People who do not have to live like this will never understand! You have us, we understand! Hugs!
What I've learned this year is that the people who matter to you the most will undoubtedly support you unconditionally and not make you feel like your "lazy", "look like you don't have a disease", ask, "why can't you open that?! lol" etc... And to hell with the people who don't understand after legitimate time. You just have to let it go at some point. A couple years ago, when my husbands family would ask me how I'm doing, and I would say how bad of a weeks its been and explain why, they didn't actually want to hear it or listen. They would make me feel like a weak person.. I've learned that they will never change and I just have to accept that. That is what this online support group is for. We all understand what you're going through. I wish I could give you a real hug hun!
Aaarrggghhh! I've had to develop a duck's back over the past few years so it all just runs off. I don't write them off or push them away, I just accept that they're not going to be supportive and I don't discuss my illness with them any more and I try not to care what they think. It's not easy, but it's all I can do with it.