I’ve posted blogs here and there about the issue, patient advocate and “A-list” RA blogger Kelly Young a.k.a. Rheumatoid Arthritis Warrior has posted blogs and aired PSA’s about it, and, naturally the Arthritis Foundation has tons and tons of information that offers in-depth detail about what, exactly, rheumatoid arthritis is, but for some reason, people still do not understand rheumatoid arthritis.
Well, it boils down to is lack of education. The word “arthritis” is so often misinterpreted. Sadly, it is immediately associated with osteoarthritis and old age. Not to diminish OA, which can be quite painful, but RA is notably and provably more disabling with a higher rate of morbidity. RA also has the capability to attack other organs of the body, and not just the joints.
Unlike osteoarthritis which is a wear-and-tear condition affecting the joints, rheumatoid arthritis is an autoimmune disease that can potentially affect every major system of the body, greatly altering the quality of life for those living with it.
This is NOT to say that RA is a death sentence – but the reality is that, unlike the association that comes to mind when one hears the word, “arthritis” – it can be.
How can you prevent this misconception?
Educate others about what RA truly is. This will help them to understand the severity of the condition with which you are living.
Also – let people know that every patient is different. Yes, some people ARE like the people on the commercials – jogging on a beach, skipping and laughing, rock climbing and horseback riding. However, other RA patients – and probably the greater majority – are depressed, home-bound, with canes or walkers, in wheelchairs or on bed-rest – or at the very least, NOT hitting the gym or running a marathon.
As with any illness, there are great extremes: there are people who are doing extremely well and those who are extremely disabled. There are patients at both ends of the spectrum, and many of us – who you often DON’T see or hear from, fall right in the middle, having good days and bad days. We aren’t cheerleaders bragging about how every day is beautiful and gorgeous and that we are healthier now than ever, but we also aren’t Debbie Downers bemoaning our very existence with RA, whining about every ache and pain that we experience.
It seems that the “normals” out there want to place RA patients in one of those two categories. To them, we “should” either be the people on the commercial – you know, the ones who don’t seem sick at all and can do anything and everything – or, we are extremely fragile and disabled, and if we do any more than that, well, we must not REALLY have RA that badly.
Both of these “portraits” of an RA’er could not be further from the truth, because, again, they are two ends of a spectrum.
Part of creating RA awareness is educating the public that, yes, you can be extremely disabled and even die from RA, and yes, you can be a professional athlete or climb Mt. Everest with RA, but, the vast majority of us are somewhere right in the middle.
Another part of creating RA awareness is erasing any stigmas attached to chronic illness.
People with RA did not bring it upon themselves.
People with RA are not addicted to medications.
People with RA have real pain – it is not “all in their heads.”
Rheumatoid Arthritis is a VERY REAL condition. Likewise, most people with chronic pain have real chronic pain. Sure – there ARE, of course, people with “chronic pain” who have manifested psychosomatic symptoms in which their pain is the result of a psychological condition, there are people who fake their illness for attention, and there are people who exaggerate pain in order to obtain prescription pain medications. These people are in the minority. In fact, Rheumatoid Arthritis affects 1.3 million Americans, and is the leading cause for disability in our country. So, there’s a good chance if someone you know says that they have RA, they aren’t “faking it.” Rheumatoid Arthritis pain is very real and is diagnosed not only through the patient’s verbal history, but also through physical examination and diagnostic testing such as imaging (MRIs and X-Rays) AND blood work. It IS NOT “in their head.”
Some people make light of RA but there’s nothing to make light of. It carries with it a high rate of mortality and disability. However, another misconception about it is that you HAVE to succumb to a life of disability. Yes, if you have RA you are going to have some amount of pain and likely be limited in some ways. However, you can live well with Rheumatoid Arthritis.
This is another thing that people don’t get – while it “can” be a “death sentence” of sorts, it certainly doesn’t have to be!
How can you help enrich your quality of life with RA?
* Find a good doctor – specifically, a rheumatologist. Just as you’d find a neurologist for a neurological condition, you want to find a rheumatologist for a rheumatic one like RA. Don’t have your primary care doctor treating your RA. Be part of a “team” with your doctor – good communication skills are key, like in any relationship! If your doc isn’t fitting the bill, it’s time to move onward and upward and find a doc who will get the job done!
* Try, and try again! RA treatments are about trial and error. You may go through a lot of medications and therapies to find the combination of drugs and/or treatments that work for you. Every person is different. There are lots of infusions, injections, and pills out there. The same drugs don’t work for everyone! Also, surgery isn’t for everyone, physical therapy isn’t for everyone, and alternative therapies aren’t for everyone! So try to be patient to see what works for YOU! Also, remember not to be overbearing with offering advice to other RA patients – what is working for you may not be the key for them!
* Exercise! Physical activity – as excruciating or challenging as it may be – is the natural pain reliever for arthritis. Consult your doctor and find an exercise regimen that is right for you. Seriously, your body will thank you. Listen to your doctor – if they are recommending lifestyle changes such as diet, exercise, or weight lost, act on it! They are telling you these things for a reason, and if you ignore them, you’re just hurting yourself….literally.
* Find a support system! Find a local RA support group or an online one. Rheumatoid Arthritis can definitely take an emotional toll. If you don’t want to join a support group or an online community, talking with a therapist or counselor is also very helpful as a way to cope with chronic illness and the stress that comes along with a life with RA.
Take part in advocating for your illness! As you spread awareness about RA you will feel a sense of purpose and will find that it is rewarding to educate others about your condition! The more that we can do to help others UNDERSTAND Rheumatoid Arthritis, the better!
There are so many misconceptions out there…if you “have it,” do your part and help people to “get it!”
CHECK OUT THIS FACT SHEET FROM THE ARTHRITIS FOUNDATION: HERE.
CHECK OUT KELLY YOUNG’S PUBLIC SERVICE ANNOUNCEMENT, RA IS NOT “ARTHRITIS”, HERE.