I have a disability, but I’m not disabled. To people living with chronic illness, this makes perfect sense. To people who are not “spoonies” or living the chronic life, it doesn’t make any sense. I have a disability called polyarticular spondlyoarthropathy-NOS (not otherwise specified). Most people have no idea what that means, so I just say that I have rheumatoid arthritis (RA) or autoimmune arthritis. As soon as I say that people respond with, “Oh, I have that, too.” People hear “arthritis” and assume osteoarthritis. Osteoarthritis and autoimmune types of arthritis are simply not the same. Don’t get me wrong, all arthritis is painful. Osteoarthritis is degenerative. The joints wearing down over time from use. Autoimmune arthritis is quite different. This type of arthritis exists with an autoimmune disease component. It can attack not only the joints, but skin and internal organs. Autoimmune arthritis causes severe fatigue, fevers, and the notorious “brain fog”. Osteoarthritis does not have this autoimmune component. Medications do help slow the progression of my disease, but I’ve never found a medication that treats all of my symptoms. Fatigue and brain fog remain my nemesis. I struggle daily with trying to act normal while wanting nothing more than to fall back into bed.
|I’m not gonna take it anymore!|
Most days, I can handle the symptoms but what I can’t always handle is the constant questions, comments and misunderstanding associated with my disease. Recently a family member made a snide comment when I mentioned how hard it was for me to drive a long distance after a full day of work. He doesn’t get it. Most people don’t and think I’m just a complainer. The funny thing is that I rarely complain. If people only understood the toll this diseases takes on me emotionally, physically and financially, maybe things would be different. I don’t want sympathy, just understanding. People close to me get it but awareness & understanding with the general public is minimal. It’s frustrating and disheartening. It makes me angry. I want to see it change.
This desire for change is the reason I so love to be a part of World Autoimmune Arthritis Day (WAAD). WAAD16 is an online experience, aiming to share resources from all over the world and raise awareness about autoimmune arthritis diseases. It is an event that includes non-profits from all over the world who participate in a virtual “race” in which valuable educational materials and resources are shared regarding dozens of chronic illnesses. Some participants this year are: The Arthritis Foundation, National Psoriasis Foundation, American College of Rheumatology, EULAR, Spondylitis Association of America, IFAA and many more.
|Non-profits from around the world participate|
|Official Guinness Book World Record Attempt|
As patients we need to stand up and let our voice be heard. During this event, IFAA is going to be attempting a Guinness Book World Record with the most pledges during a health campaign. Join us, make history, and let your voice be heard around the world! Sign up and make your pledge today! Learn more here: http://www.ifautoimmunearthritis.org/guinness-world-record-attempt.html
I also want a refund on my body. I am thinking it will be a long time coming however. I checked in all week this week on the proceedings and things looked like they were going very well. I was participating in Diabetes Blog week but i have really enjoyed the writing all week.
Until I read this article, I am one of those who would never know the difference when it comes to autoimmune disease and arthritis. What I think is brave is the fact you turned your feelings and emotions into something more positive by joining the World Autoimmune Arthritis Day foundation and using your voice to make the world more aware.
Leonardo @ U.S. HealthWorks Medical Group
Thank you for your kind words.