Complicated though it may be, there is no reason known why Rheumatoid Arthritis shouldn’t be UNDERSTOOD. Will people ever understand what it really is. Will they ever truly get that it is simply not the arthritis they have come to believe that it is. Though arthritis is a word in our diagnosis, it is far more complicated than that. But understanding Rheumatoid Arthritis for so many seems to be as complicated as the disease itself. Why have so many turned their backs on understanding this disease and us? Yes disease, that is exactly what we have and is fighting, a disease. Fighting for understanding of this disease is very important for us because without it, we are treated less than we should be and that is a Shame.
We could blame a lot of that on the word arthritis but how many times have we said what we have is much more than what they believe. “We have Rheumatoid Arthritis”. Still the only thing that catches the ear of everyone is, arthritis. Not that we are down playing arthritis but there is a difference. As we so often do, we describe our symptoms, we describe what we’re going through and we describe our medications all in an attempt to make known the difference, still what they hear is simply “I have arthritis”, leaving rheumatoid out of the equation. They have not really heard the depth of the details of our symptoms nor how we suffer at the hands of this disease and our medications. They refuse to see our faces as we struggle with all that comes with this dreadful disease still believing all is the works of arthritis. They do not understand just how much we have lost, will lose, can’t do, won’t do, miss doing, want to do, suffer inside, hurt so, cry daily, plead daily, sit alone, face the mirror, watch the changes and try to come to term with.
We have spoken over and over of how our days with Rheumatoid Arthritis are so painful, tiring and unpredictable but we almost always get “I know how you feel, I’m always tired too, I have the same thing, well you look fine or in some cases, you just have to “just shake it off or exercise a little more to loosen those joints”. All of this because RA is not thought of as a disease at all but as aching joints that comes with older age, injury and it’s something that will simply get fixed with just a little work and a few over the counter medicines. More than many can believe, we are thought of as complainers for something they believe is simple. It’s truly not understood as a disease that could potentially be life threatening and is far more reaching than any over the counter medicines or exercise could ever begin to fix. It is tough finding a fix with any medication for this disease, a struggle that no one understands.
Yes we do have aching joints because that is a part of our symptoms. Though our joints are treating us in ways that are unimaginable, the real culprit at work is our “immune system” which is relaying pain to our joints and damage to the rest of our body, this is the detail that everyone seems to be missing and where the understanding breaks down. Our immune system fights us as hard as we fight it and our medicines fights to fix it and these are the fights that everyone refuses to see or acknowledge. This is the part that is causing us harm and many can’t seem to be able to wrap their minds around this fact enough to try to understand the making of our disease. How does this cause arthritis they wonder! As we give our best symptoms or if you want to say definition of Rheumatoid Arthritis as being an autoimmune disease in which the body’s immune system mistakenly attacks the joints causing inflammation, swelling and pain it all gets lost. We always end up back at the beginning, suffering, explaining and isolation never seeming to get what we need. Nowhere in sight is the understanding that sets our disease apart from arthritis.
Broken as the communication maybe about our disease, we still deserve understanding and that is for anyone suffering. This should be done without doubts or misjudgments. Without a doubt RA is vicious, debilitating and life changing and we are forced to work within the limits of it because that is the control it has over our lives. It has a grip on us that cannot be broken and unfortunately this is the future we face. These are the unmistakable truths that define Rheumatoid Arthritis and the truths that we wish all could know and accept. Understanding only takes an open mind, it is not like giving up anything that you will lose, in fact it is giving compassion.
Through all that we endure, has anyone in your life took a moment, sat down and asked “How Are You Doing” and do you find yourself craving moments of pure care where the attention paid to you was real! I have and We deserve it.
Understanding has bridged many gaps, please give it a try.
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