Help me, help you!

I read something so troubling today.

I was on a website that deals with sufferers of RA and there was a comment section. A young girl of 16 had posted today on a thread about having RA and people around you not understanding and feeling alone. She explained that she had been diagnosed in the last year, gained over 60 pounds from the steroids, kids were teasing her at school because of her new limitations, and her family doesn't understand either and also make light of her situation. I felt so bad for this young girl and wanted to write to her, but wasn't able to post (there was something wrong with the site when I attempted, but I may try again later). I wish there was a way to take this girl aside and tell her that everything will get better and you just have to accept that there will be those in your life who will get it and those who won't and to not dwell on the latter. I have so many things that I feel I could impart to this girl, but no way to do it. Kinda bums me out.

This got me thinking again about starting a support group for people with RA. Living where I do, there is no support groups or peer groups for those of us who suffer through this disease everyday. There is also no outlet for our caregivers and loved ones who suffer right along side of us and have their own issues with the disease.

Why is that?

Why is there so much emphasis on things like alcoholics and over-eaters, but those of us who suffer from a disease that affects an estimated 1.9 million Americans and over 20 million worldwide every year? That is JUST Rheumatoid Arthritis alone, not including other types of arthritis (such as osteoarthritis, fibromyalgia, gout, Ankylosing spondylitis, juvenile arthritis, systemic lupus, Scleroderma, etc) which affect 1 in 5 Americans or 46 Million Americans every year.

With numbers like that and commercials flooding the television for the new medications available one would think that there are infinite outlets for those of us who are suffering, but you would be wrong. There isn't.

Oh sure, there are blogs and websites dealing with the disease, but nothing tangible. I think that is why I want to start a support group here where I live because with numbers like that, I would think there would be droves of people who would want a place to air their daily frustrations, ailments, and victories with this disease. I think people who suffer in silence are worse off than those who have others to commune with and suffer with. Someone you can say, "Hey, this made me feel this way" and you can say "I know what you mean" or "I felt that way too." It is not that misery loves company, but it is more about validating your feelings and knowing that you are not alone.

I am fortunate that I have wonderful parents and siblings (well a few siblings but we won't get into that) and friends who GET IT!! They understand what I am going through, or at least they try. They did what it takes to do the research and get the information so that they understand as well as they can. They may not know first hand what it feels like, but sometimes I think it is harder on them to see me in pain and suffering than it is for me. I have no idea what they go through or what compromises they have made to be in my life. They all deserve awards! But at the very least, they deserve a place to go to to talk about how they feel with other people who also go through and feel the same way.

So I am going to do it. I don't know how...but I will figure it out. I am sure there are people out there who would want to find the support and help from people out there who are just like them...just like me!

I will keep you posted as to how it goes. I hope it works out because I need it. And I know there are others out there just like me who could benefit from it too.

Wishing you all good health and humor...and appreciation to all your loved ones and caregivers...we couldn't make it another day without you!