There is a devastating problem in the world of Autoimmune Arthritis that inhibits us from receiving the care, validation, and funding that we so desperately need.
For those of us with diseases like Lupus, Ankylosing Spondylitis, Still’s Disease, etc, we have a name. While our name might not get the awareness it needs, it has a unique name of its own. It is not confused with another condition due to name alone. It does not suggest elderly, doesn’t bring about thoughts of Tylenol or old-age, or advertisements of seniors dancing.
Those diseases with unique names? They have individual organizations, both national and international, that help patients and have been for years. But Rheumatoid Arthritis? The first and only US organization just established itself this year (which you can learn more about here), despite 1-3% of women, over 300,000 children, and over 2 million people overall in the US being afflicted by this autoimmune disease.
Those of us with Rheumatoid Arthritis, Juvenile Arthritis, Juvenile Idiopathic Arthritis, and Juvenile Rheumatoid Arthritis (which, truthfully, hardly vary in etiology whatsoever) are left in the dark. We are lumped together under the A word by organizations (and patients!!) that lump us together and, like dust swept under the rug, our symptoms are swept aside and pushed far up underneath that umbrella until no one realizes just how dangerous and serious these conditions are.
I have come to despise the A-word. But more than I despise the A-word, I despise seeing fellow bloggers and tumblr users using the A-word. It is time to stop using the A-word improperly!
You know what A-word I’m talking about: ARTHRITIS.
- “Arthritis” IS NOT Autoimmune Arthritis, so when you say “let’s fight Arthritis together,” you are not reclaiming your disease.
- Using the A word does not help others understand the seriousness of your disease or become aware and more knowledgeable about autoimmunity.
- Why is this important? People are not going to donate their time or money to “arthritis” when you can just take Tylenol and Glucosamine supplements! People will, however, be inclined to donate to 2 year old’s who have gone blind from RA-related uveitis, 20 year old’s who are losing their hair and who have damaged organs, 15 year old’s purchasing a new wheelchair after losing the ability to walk, 30 year old’s struggling to afford monthly infusions of $3,000+ drugs. Does this sound like “arthritis” to you? I don’t think so.
- Arthritis is a condition. Autoimmune Arthritis is a disease. Believe it or not, there is a difference. Arthritis is a condition caused by wear and tear and is typically associated with aging. While OA can be extremely painful and disabling, Autoimmune Arthritis is a whole different ballpark of disabling. Autoimmune Arthritis is caused by a malfunctioning immune system. It is a disease that cannot be treated with OTC medications alone or left untreated without serious damage, even death.
- Patients Deserve Validation. We are not enduring infusions, injections, low dose chemotherapy medications, surgeries, and long term suffering because of a relatively benign condition; we are enduring these things to avoid the consequences of diseases that left untreated are often fatal. The fear of the C word should be the same fear one feels when they hear Autoimmune Arthritis. It is equally devastating and very much incurable.
Join World Autoimmune Arthritis Day, reblog this post, share it on your Facebook wall, share it with friends and family members, make a donation or buy a bracelet, be the change you wish to see and demand better health care.
Take the pledge:
I am important
My health is important
This disease is important
And as my disease is invisible and misunderstood to nearly all that I know,
It is my responsibility to help bring it to light.