Rheumatoid arthritis is a very hard disease to get to grips with – not just because one has to learn to live with the fact that it’s a progressive and incurable disease (at the moment), but because you just don’t know how it’s going to affect you day to day, and because everyone’s R.A. is different. If it’s hard for those of us who suffer from the darned thing, spare a moment to think how hard it is for those that don’t! We bloggers often vent our frustrations in our blogs about the lack of understanding from the general public, but if we don’t help them to understand then nobody will. Health professionals certainly won’t – they can’t; unless they have R.A. then they don’t know what it’s like themselves, and if they do have R.A. then their rheumatoid arthritis will affect them differently to the way that mine affects me or yours affects you. So it’s up to us, not to stop whinging, after all that’s one of the purposes of my blog, to get my whinges and frustrations out safely, but to at least take the time to put people straight when they make dumb or ignorant comments, not out of malice but simply because they don’t understand.
I get frustrated when my neighbour tells me that his mate down the road also has arthritis and that it was caused by him being overweight and if I lost weight I might be cured. I get frustrated when a friend tells me that she knows someone with rheumatoid arthritis and he’s obviously just putting it on and using it as an excuse because he says he can’t get out of bed in the mornings and go to work, but there he is in the pub in the evening playing darts. I get frustrated when my consultant tells me that, compared with most people they see in the rheumy department my R.A. really is peanuts. I get really frustrated when friends tell me all I have to do to get better is eat more sprouts or rub some magic potion into my joints.
I spend a lot of time getting frustrated but not nearly enough time putting all these misguided people right.
So it’s good to know that there’s a group out there who are going all out to set the record straight and to help to educate the general public and friends and relatives of all autoimmune arthritis sufferers (apparently ‘sufferer’ isn’t PC, but I’d say anyone with autoimmune arthritis (Rheumatoid Arthritis, Juvenile Arthritis, Psoriatic Arthritis, Reactive Arthritis, Ankylosing Spondylitis, Scleroderma, Systemic Lupus Erythematosis) is a sufferer, to one extent or another!) about what rheumatoid arthritis really is and what it does and how we live with it. I hope you’ll consider supporting them.
The “Buckle Me Up!” International Autoimmune Arthritis Movement (IAAM) is an up-and-coming, worldwide nonprofit which will focus exclusively on helping the autoimmune arthritis sufferer*. Their mission: committed to eliminating autoimmune arthritis, and diminishing the disability associated with it, by raising global awareness and improving the quality of life through education, partnerships and support. It is a nonprofit formed by autoimmune arthritis sufferers, run by autoimmune arthritis sufferers and, therefore, will continue to address the problems faced by autoimmune arthritis sufferers. This will partly take place by partnering with other organizations, and they have already joined forces with the Arthritis Foundation and are working on partnering with other arthritis-based charities both nationally and internationally. In addition to partnerships, a primary focus is to make a lot of noise, verbally and visually, by re-branding the misconceptions of the term “arthritis”. Examples include the published web-commercial series, “A Day with RA”, showing the realities of living with an autoimmune arthritis disease, developing the first official autoimmune arthritis charity bracelets, and being featured on MyRACentral.com and WebMDtv’s “RA in the News” (Summer 2009). They hope to continue this level of exposure in all autoimmune arthritis arenas, including creating web-series awareness commercials for each autoimmune arthritis condition.
If all the autoimmune arthritis sufferers around the world come together, we can make this a reality. But first, we must raise money to finance the legal fees and start up costs to become an official nonprofit. So, today, many autoimmune arthritis blogs are joining forces to reach out to our community of sufferers for help. The IAAM is asking for $1 donations to assist with these start up costs. Every dollar earned will bring us all one step closer to being understood.
To view a complete list of start up costs and to send your $1 donation, please visit the Bucklemeup website donation page.
Let’s all work together to bring awareness to our misunderstood conditions!