Living With RA & Educating The World

Vanessa Collins Health Guide
  • The general public does not understand systemic, inflammatory arthritis. They do not understand the serious nature of RA. In addition to that, most people, and too many PCP's, have little to no knowledge about the medications used to treat RA, and how complex RA really is.

     

    John Q Public sees the commercials on TV for numerous FDA-approved RA medications. These commercials have an actor or a celebrity walking around like any other healthy person. They seem to imply that if you simply take this or that medication, your life will return to “normal”. You will be able to resume playing golf, or whatever sport you enjoy. Shizam! All is well.

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    In my estimation, these commercials do more harm than good when it comes to educating the public on what living with RA is all about. RA is chronic and painful disease that requires strong medications. It can control your life if you let it. Living with RA is a full-time job.

     

    Recently I thought about having a T-Shirt made that says “My Joint, Or Yours?” on the front. The back would have a picture if a hand deformed by RA and a it would say, “This Could Be You.” Under that line would be a bold “Support RA Research.” Reading that t-shirt should at least peak some interest in RA.

     

    How must people who know nothing about RA feel when they find themselves ambushed by this disease? Surely they wonder why they have never heard about the pain and fatigue of RA. Surely, they must wonder how they are going to be able to function, earn a living, and enjoy their families. Surely, they feel alone in a world that just does not understand.

     

    I don't know about you, but I often cringe when someone asks me how I am feeling. Usually I resort to: “I'm fine! How are You?” If I am obviously having a bad day, I might say, “I'm okay. How Are You?”

     

    I know the people at the church I attend every weekend must wonder why I am walking with a cane one week, and not using a cane the next week. The next week I may have to sit down during the part of the liturgy when everyone else is standing. This is particularly embarrassing for me because some of our older members are standing just fine.

     

    I never know how much information to give people who seem to be genuinely seeking information. I try to give them the facts that I think they can process at the time, and sometimes that works out well. Then there is always the guy or gal who says, “Oh, yes, I have arthritis in my finger.” I never know what to say when confronted with this type of response.

     

    Doctors who treat our disease and those of us who have the disease have written articles and SharePosts suggesting that it might be time to give RA a different name. It seems when people hear the word arthritis, they immediately think of what their grandma dealt with, and that most generally was OA. They have no knowledge or understanding about autoimmune disorders. Perhaps we should change the name to something that takes into account the autoimmune aspect of the disease.

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    When I was first diagnosed with Seronegative RA, my RD prescribed 400 mg of Celebrex a day, along with Methotrexate, Prednisone and Tramadol for pain. My PCP was beside herself when she learned that I was taking 400 mg of Celebrex. She told me that not having any pain would be nice, but it was better to have some pain than to risk the side effects of taking so much Celebrex. My PCP meant well, but she has absolutely no idea of how painful RA can be. I didn't have the energy to explain anything during that visit, but I am going to attempt to widen her understanding when I see her next month.

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    While most of the general population doesn't know much, if anything, about RA, there are plenty of people who do understand our sometimes desperate searches to find pain relief. These people try to make money by offering “miracle cures” for our pain and fatigue. These people post on RA forums and advertise their products on television and in magazines. They promise the impossible. They promise to cure RA with little or no risk.

     

    Apparently business is good enough to keep them going. There are a lot of people looking for a cure. The idea of a single product that is “all natural” taking away pain is an attractive allure. Unfortunately, they just don't work. In addition to that, these people offer false hope to patients who deserve better.

     

    There are organizations that are attempting to educate the world on our behalf. The Bone And Joint Decade has stated goals of raising awareness of musculoskeletal disorders and their effect on society, empowering patients to advocate for themselves, promoting prevention and treatment in a cost-effective manner, and increasing understanding of musculoskeletal disorders.

     

    The Bone And Joint Decade's achievements for the first ten years have been significant and they have stated they intend to continue their mission for another decade.


    BJD is going to focus its efforts on bringing musculoskeletal disorders to the attention of policy makers throughout the world. You can read more about this initiative at http://www.boneandjointdecade.org or on the American site http://www.usbjd.org

     

    World Arthritis Day is celebrated each year on October 12th. It was established in 1996. People around the world with RMDs ( rheumatic and musculoskeletal diseases ) join together on this day to make their voices heard.

     

    The theme for World Arthritis Day this year is “Move To Improve”. The Arthritis Day website lists an activity of the month under the “Get Involved” tab. The September/October Activity of the Month is cycling. This site explains the benefit of cycling for people with RMDs and even has tips on choosing equipment for people of varying abilities.

     

    Under the “Resources Tab” on the website you will find a Rheumatoid Arthritis Exercise Fact Sheet. I found this especially helpful. I need to exercise, and I know it. Truth is, we all need to exercise. You might find this website very helpful. You can see more at http://worldarthritisday.org

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    I think all of us experience frustration from time to time because of the lack of understanding we experience from the general public, and even our friends and families. The truth of the matter is that this lack of understanding is not going to change unless, and until, we start doing our part to fill that void with knowledge.

     

    We have an organization called “Healthy Women” where I live. This organization is associated with the local hospital, and they have monthly meetings in an auditorium downtown. They focus on various health concerns as they relate to women. They often have guest speakers to talk about cardiovascular health, breast health, etc.

     

    I am going to call the people responsible for this program and suggest they sponsor a presentation on autoimmune disorders. There are no rheumatologists in this small town, but there is a University Hospital a half an hour away. I am going to gently suggest that they invite an RD from the University Of Missouri to address this issue.

     

    I don't know if I will be able to convince the hospital that this is an important topic for women. I don't know if they will invite an RD to speak. I do know that I am going to ask. I want to do my part to fill the void. Is there something you can do to help people with RA get the understanding and support they deserve? I truly believe that we can make a difference for those who come after us, one person at a time.

Published On: October 12, 2011