When asked why it is that we need to campaign for awareness, the answer is twofold. The easy answer is that the research into causes, disease progression, treatments and (dare I say it?) cures is woefully underfunded. Without awareness we will not get the funding that is so desperately needed.
On the more personal front, from the front lines the lack of awareness does more damage to the patient than just the funding issues. It damages us emotionally, it adds stress to our lives and diminishes the pain that we live with on a daily basis. So what are the roadblocks that we run into in our road to awareness?
- What's in a name? Rheumatoid Arthritis. Let's be honest here. The Rheumatoid gets lost and all anyone sees or hears is "Arthritis". I did it when I was diagnosed. My first thought when it came out of my Nurse Practitioner's mouth was "I am not old enough to have ARTHRITIS!" There's nothing catchy, nothing "sexy" about being associated with a very well known condition that our grandparents get. The suggested alternatives are too...umbrella to me. Rheumatic Disease? Autoimmune Disease? There are hundreds of both. We need something that is unique to our situation. I feel that that universal knee jerk reaction to is why our "celebrity" RA patients aren't vocal about their disease. Who wants to be associated with something that is for "old people"? These people are in a career that values youth. Look at Kathleen Turner. She allowed the tabloids to broadcast that she had substance abuse problems rather than coming out and saying that she was fighting RA. While I shake my head at that thinking, I can also see why, when known as a sex symbol, she would not want to be associated with the word "Arthritis".
- The invisibility factor. Until such time as we have had significant damage, you can't SEE Rheumatoid Arthritis. I have been diagnosed for 5 years now. Visibly, the only physical damage you can see is that my pinkies no longer straighten and two of my toes on each foot are turning out. Who looks at that? I see it because it is me and my own vanity but no one who meets me would notice unless I pointed it out. I walk differently- I have a bit of a wobble these days and my balance is not fabulous, but again- just meeting me you would not know that it hasn't always been that way. To my own detriment I only use my cane, or my braces when I have to do so. Again with the vanity thing but also because I tend to power through anything tough in my life. It's my own way to deal but even if I do use my mobility aids, people assume that I have been injured and I don't always have the time to give an adequate explaination.
- The judgement issue. Judgement comes in many, many forms. My husband and I have handicap plates on our vehicles because of my RA. Grocery shopping- which I love- can be very tiring and often makes my hips feel like hot pokers are being stabbed into them. When I am shopping, I use the cart to maintain my balance and to lean on as needed but no one can see the pain that I am in, because of this I have been on the receiving end of a multitude of filthy looks and snide remarks for having the nerve to use my plate for handicap parking. At first it bothered me, but these days I just let it go. I am not the only one who has dealt with this. A lot of RA'ers report the same issue. When it comes to work, there are days when I am ready to take on the world and days when just getting out of bed is a struggle. When I have one of those days I try to be honest with my colleagues and let them know so that they can understand why I am doing tasks that involve sitting more than standing and so far it has worked for me. I am also fortunate (?) enough that my boss also has RA and therefore she completely understands. A lot of RA'ers do not tell their employers about their condition because they do not want to be seen as "disabled" and that can lead to charges of malingering and brings on a whole host of issues as colleagues assume that you are being "lazy". Taking days off when you are in the middle of a flare only adds to this because we "don't look sick".
- Health care ignorance. I have been fortunate enough to find terrific doctors in my journey so I have not run into this personally but many folks with chronic pain report that they have been accused of seeking drugs or having their pain be all in their heads by health care providers. How completely demoralizing must it be to have the people who are supposed to partner with you to care for you treat you in such a manner? If your doctor (nurse, specialist etc) doesn't believe in you, why in the world would you publisize your disease? I wonder if these doctors realize how far they are setting our awareness back through their unkind treatment of their patients? I wonder if they care?