Rheumatoid Arthritis Support Group

(I apologize if this sounds... trite, or condescending, maybe? I don't mean it that way, but I don't know how else to phrase this...)

I've found that there is no pity for RA. Like you said, people don't realize how serious it is. If you tell people, they will look at you and either say, "oh, my grandma has that" or "oh, yeah, my knee hurts sometimes." Something of that ilk; they're thinking it's osteoarthritis or just normal aches and pains. Being so young, with an invisible illness, I've found that most people don't have a shred of pity, and those that do are the compassionate people.
Personally, I try to only tell the people who need to know. At times this is a large group, other times it's very small. It is embarrassing, sometimes, but I'd rather have some people know than have people getting upset that I can't do whatever it is that they want to do.

Are you worried about your children suffering because you're in pain/can't do everything you used to because of the RA, or are you worried about them inheriting the disease?

Sorry that you're going through this. I'm 20, and I know that having RA so young is the absolute pits.

I agree with Megan- sometimes it's best not to look for understanding from people who do not live with RA. It took me a long time to accept the fact that they just don't get it. It used to make me very angry- but I've come to realize that I can't expect people who have not experienced it to understand or have compassion for it. I looked within and found myself lacking in understanding other people's afflictions as well.
I have found I no longer feel the need to disclose the fact that I have RA and it has been liberating.
When you feel the need to vent or commiserate- know that this is a safe haven for you.
I wish you all the best.

Instead of saying RA, many say "an autoimmune disease." There are less misconceptions you have to deal with that way. And if you're so obviously vague, it often clues them in to stop asking questions. There's been a couple times I've used that with complete strangers - without batting an eye they say, "Which one?" Followed by the inevitable, "You're too young for that!" ARGGGG! Then I come vent here ;)

Sometimes I just want to tell people I have gravel in my shoes LOL

I am only 34. If a stranger asks me, I just tell them that it's personal or that it's a condition I was born with. Those that know me know what it has done to my body. I am in a chair and have curled hands, most people just leave it alone cause they are afraid to ask. Just ignore those that will never understand. Lean on those that do.

This is NOT your fault. You did not ask to get this condition. Your kids will love you for who you are....not your heath. Your kids are blessed to have you, and they will understand more than anyone cause of the knowledge they will have on JRA.

I guess thats my problem is i will not tell ppl i cant do things i will jus push myself n do it neways instead of look stupid. but thats a good idea to jus say i have n autoimmune disease cause i have hashimotos disease too. i jus need to learn how to deal causr its jus so fresh for me now. and as far as my kids i cant even rock my baby to sleep nemore cause hes a fatty n my back wrists hurt too bad. i know this will all get a lil better once im on the right meds its jus so hard wait ng for that time. i jus dun want the kids to know somethings wrong with mommy. i have been considering antideppressents but im normal an overly happy person so i jus hope it gets better as the pain does.

And i appreciate all of you so much. thxxx. my husband tries god bless his heart lol

I agree with the others, it's a lonely disease. I used to get mad and sometimes I still do but I've learned to not say anything except here, where others understand. Right now I am contemplating telling my pastor because I know he'll just give me a dumb look like "so"...the only reason I am even contemplating telling him is because I am young compared to the rest of the congregation and I don't want him giving me "the look" when I can't volunteer for something. I have two kids and they come first, if I have anything left after that I'll volunteer for things I can do but I want him to know that I have only so much energy. I suppose any health person can say that too but it's different with RA and how can you get someone to understand that? I mean I wouldn't believe it if it didn't happen to me.

As far as your kids, they will be fine, they won't know you any other way. My kids were 10 and 7, the first 3 years were really tough and I feel I missed a lot but my younger son is very compassionate and maybe he wouldn't be if I wasn't sick as he has seen me struggle and has always offered to help. A big mistake I made is not letting anyone see me suffer or I rarely asked for help as I wanted to put on a strong face. I'd urge you not to do this, let your family see what you go thru as I do believe had I done more of this my older son would be more compassionate person. Who knows, that's just what I think I'd have done differently. You will be a great mother with or without RA you just have to get more creative and instead of doing active things you could always draw in bed or watch movies, pop corn in bed when you aren't feeling well...make it into a "camping" adventure. I'm sorry you have this so young and your kids are young but you can't dwell on it, it is what it is. What medications are you on?
Sue

Children tend to be a lot more understanding than adults and see people for who they are rather than what they have. Their capacity to empathasize and appreciate people who have differences (including disabilities) will be a big boon to them. They love to help and with some patient training, can be wonderful helpers. Don't hide your condition to them. Rather as they get older, explain things in a way that seems developmentally appropriate for the time at hand.

ya my hopes r it will open them to other ppl other than jus healthy normal ppl. and as far as meds i have been on plaquenil sulfasalzine and methotrexate. none of them worked and the mtx acully made my pain much worse and my stomach didnt tolerate it well. my doc is starting me on enbrel which is what i was waiting to get on cause i have herd many good things about biologics. im jus trying to not b too hopeful cause im not ready for the crushing news thst this med didnt work either. sometimes it makes me more depressed that so many ppl on here are still struggling after so many years and some still not on the right meds. is this what im doomed for?! a sad slow painful death? jus wish i could get these awful thought outta my head n go back to being the happy positive person i have always been

Give yourself time to get used to your new normal. I can't even remember the person I used to be before RA. Enbrel will work for you, it's worked for me, I mean I'm about 70% better so that's more than I ever hoped for. Also, there are lots of biologics now so one of them will work for you. We can be thankful that we live in a time when there are so many different treatment options.
Gentle hugs,
Sue