Just Looking For Information

[sabethea]

My extremely loved sister-in-law has just been diagnosed with RA. Any advice on good websites, useful information for the early days of RA - anything, really, would be welcome. I just don't know where to start at the moment.

Comments

[jasmin_sane]

I'm afraid I won't really be of much help here, as this community is really the only one I participate in, anywhere, that's RA-related. And that's kinda what I wanted to throw in here: obviously, your sister-in-law might have a totally different experience to mine, especially given that I was diagnosed at 12 and she as an adult, but...

I have tried, several times, to find comfort and a sense of community among other sufferers of RA, online or IRL, and each time I've wound up disappointed. It might of course be just me, and the way I react to things. But I feel... I dunno, less like a human and more like I'm just a diagnosis - like we're all just our diagnoses - whenever I interact with others with RA. I guess it's as meaux30 says; people love to talk about bad news online - but it's also more than that, for me, and it really brings me down. And similarly, even now after nearly thirteen years, it still pisses me off when friends or relatives suggest diets or drugs or treatments they've heard about. I hate hearing about that stuff; I hate being forced to relate to it. I wouldn't call it denial - there's no denying that I need help to cut my toenails, that my hips are titanium and ceramic, that I can't put on socks without my Sock Aid or straddle a bike like "normal" people do. I just don't want to be reminded all the time. In fact, daily life provides enough reminders for me that I'm perfectly fine with knowing only what my rheumy tells me each visit, and otherwise just trying to go about my days as best I can.

Of course, you know your sister-in-law and there is, after all, a huge possibility that she's like most people and really needs all the information and companionship that she can get. She might have even asked you for help and useful links, for all I know - in which case I am terribly sorry for burdening you with my own long-winded, bitter and decidedly unhelpful rambling! But this is what I would have told the people around me when I was diagnosed. People react very differently to getting a serious diagnosis thrown in their lap all of a sudden.

[meaux30]

I think I get what you are saying - I don't want to immerse myself in RA speak all the time either, or even most of the time, really just rarely - although I can't seem to shut up today!

[sabethea]

Thank you for this. It's important and helpful.

fter nearly thirteen years, it still pisses me off when friends or relatives suggest diets or drugs or treatments they've heard about. I hate hearing about that stuff;

YES.

TBH, none of the stuff I've found out today is going to be passed on to SIL unless she asks. BUT I needed to know for my sake and my husband's - and, IME, if you understand a bit about how an illness works, it's easier to understand how it may be affecting someone and therefore avoid stepping tactlessly on their sore points (if you understand what I mean).

I'm not intending to thrust all of this on her and go "right, now you will read all this and THEN you will understand" - because apart from being horrendously arrogant of me to decide I know something, I find it irritating myself when people do it to me. (Srsly, stop pushing your pet theory on how I would be better if I just tried X at me... If I don't try X, it's not because I 'don't want to be well'.)

But yes. It was good to have this reminder of the dangers of well-meaning relatives! So thank you.