For 13 of the 17 years I’ve lived with RA, I had never once spoken to another sufferer. Don’t get me wrong, in the countless medical appointments, I’ve sympathetically smiled and nodded to the other patients in the waiting room–sharing a moment of connectedness where you acknowledge being part of the same ‘secret’ club that you never asked to be a member of.
The closest I came to opening up about my life with a chronic illness, was to my Rheumatologists throughout the years–who dutifully took notes and connected the symptomatic dots with his textbook knowledge of my disease. To them, it seemed I was a classic case of JRA evolving into RA (with Ankylosing Spondylitis thrown in for good measure) and all the symptoms and aches I was describing were very typical. Funny that, because all my “typical” and “common” symptoms and struggles made me feel like I was the loneliest person in the world. That no one, even the Rheumy’s, really knew what it was like. How can I be so “common” when no one else in my entire life was going through anything even close to what I was.
Perhaps in an act of desperation, I joined a support group for Young Women with Arthritis (YWASG). And shortly after, online support forums for RA. I won’t go into how much those have helped me–since most of you share the same story–but I will share the result of the first local Chat Rheum catch up.
For people with RA, you know how difficult planning a long road trip (hahaha, long for RA sufferers that is), to a support group more than 30-60 minutes from home, you’ll understand the excitement I had at the idea of local, smaller group catch ups. And for those of you that have NO support groups even within 60 minutes–the idea of starting one is positively wonderful.
I drove a full 5 minutes to a cafe I know very well (picked specifically for their delicious treats) and had our first ‘Seaford’ Chat Rheum meetup. At a formal, large support group meeting, sometimes there can be feelings of trepidation when trying to tell your story–sometimes it’s easier just to listen. And that can be a very healing thing–to listen to stories you know so well in your own life. But in these small forums, there is such comfort in finally being able to share your story. Without feeling like your ‘hogging’ the time, or trying to be polite and let others share first. The stories become more intimate, the walls truly come down, and you are able to speak with such a feeling of freedom–that you will not be judged, or misunderstood, or worried about boring the audience with your story. We shared not only physical journeys of our disease, but the biggest positive was being able to openly share our mental & emotional struggles. As well as positive, encouraging stories, and everything in between.
We talked about how fantastic these smaller forums could also be for newly diagnosed members. Whereas large forums and open online support groups could sometimes be scary–the idea of how bad your disease could actually get, a glimpse into your future. Not all stories are happy ones. But with these smaller groups, we could tailor the session to better introduce the early stages of the disease and how to take the next steps positively. To use these meetings as not only ways to connect to others with RA, but to also help others with your experiences–to make their journey less frightening and isolating.
There are so many different opportunities to use these Chat Rhem meetups for. Some structured, some not. Some serious, some fun. Some for venting, some to provide a supportive ear or sharing helpful advice.
I hope to hear many similar stories of successful Chat Rheum’s and fun photos along the way.