This is a followup to my biggest post and I’m just wondering how far we’ve come in our progress in getting others to understand what our disease is and what it is really all about. Has anything changed or has anyone changed their minds or opinions since that time. Has an impact been made on anyone of those who didn’t understand at that time and will it make an impact on anyone this time around. So this is my attempt again at trying to get the message across to all who still refuse to understand Rheumatoid Arthritis. This a try for a better year at getting understanding, support and so much more of what we need. This is for Us.
There is an ongoing battle for understanding about Rheumatoid Arthritis and what it really is and what it mean to those of us that have it. By definition it is described as an auto immune disease that causes pain, stiffness, swelling and loss of function to joints. Um, but those symptoms sound like regular arthritis or osteoarthritis. Well the key difference here is “auto immune disease”.
So many people overlook the main and/or key difference in what we have. It is a disease and it affects our immune system. This can cause us to be constantly fatigued, forever not knowing what a new day will bring and how much function we have for that day. Not too bad some would say. What about the havoc and harm the disease itself and our medication can possibly cause to us or our organs. Note, this can include permanent damage. You see this is what it’s all about, this disease that we have.
Our pain can’t be handled by over the counter medicines so the old adages of why don’t you take some aleve or advil, vitamins will definitely make a difference, exercise more, stretch or just use the heating pad won’t get the job done. This advice though meant well just will not work for us and it shows the degree of misunderstanding there is for RA. We are forced to take medicines that we prefer not to but have to, while hoping and praying that it allows us a life that is functional. For us taking these medicines can be like a cat and mouse game, maybe it will work, maybe it won’t. This is the question we have to live with everyday of our lives. To be misunderstood on these facts can be more than upsetting. We deserve at best understanding and support and I believe the first step in this undertaking is getting to know all there is to know about this disease. The key word being disease. I think we have been robbed of so much because of the word ARTHRITIS. It has brought with it the surest form of misunderstanding and that is something that many cannot get past or care too.
Being that we are not getting a fair shot so to speak with our disease, my belief and I mean my belief is that our illness should be referred to as Rheumatoid Disease or Chronic Illness or Chronic Illness Disease. Why should we have to spend countless hours, days, weeks and sometimes months if not longer to get true understanding of what we are dealing with as patients. We have all that we can handle as it is and should not be saddled with the task of defining who we are as patients, what we are going through and having to prove that all we say and feel is true. The truth being, our lives are forever changed and that we will have to live with forever.
Getting the understanding of what this disease is and what we go through should be a chapter written in our daily lives simply because so many do not understand it, plain and simple. We should not have to carry the added burden of trying to get understanding for ourselves since this takes so much of our needed time and energy. Sometimes because we are constantly ill we find ourselves possibly facing harsh criticism, disbelief, loss of family and friends all while trying to sustain as much normalcy as possible. Is this fair, no it isn’t but this is our reality. This should not be, we deserve better and more. My cry is not only for us as rheumatoid arthritis sufferers but for anyone dealing with a chronic disease. Still my thought is, we are being cheated simply on the word Arthritis. Is this fair?
Why is it so hard for some to understand RA and what do you think are the reasons? I’m sure we all have our ideas, I have mine, what are yours. I’m also sure we have some of the same thoughts!!!!
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