Rheumatoid Arthritis, an autoimmune disorder that occurs when your immune system mistakenly attacks your own body’s tissues including your organs and joints. Let me tell you a little bit about this most Misunderstood Disease. Let me share with you the words that bind our lives together.
Pain – The pain of what we feel cannot be measured in numbers and the days we feel pain cannot be counted. This ongoing battle with our pain is a daily reminder of what Rheumatoid Arthritis does to our body. You may hear us talk about it, see us cry about but it still does not show just how bad this pain we suffer is. Putting into words what our pain is like is an almost impossible task. Some may say it’s like a knife stabbing you, a bad toothache, bones twisting and joints on fire and these are just some thoughts. Pain is our constant companion.
Fatigue – One for the books. Something that sleep can’t fix, laying down can’t fix and medication can’t fix. It is another one of our most constant companions. Dealing with fatigue the way we have makes us tired just thinking about it. Our bodies and minds are so worn out we can hardly put together a good sentence. Though we may appear to look okay, we are falling down on the inside. Fatigue is another meaning for “I Just Can’t Today”.
Medication – The DMARDS, Biologics and Prednisone and more, all given to make us feel better but do we. It is true this medication is given to stop the progression of our disease and it does help us with that and our pain sometimes but honestly we have to deal with the side effects that come along with that help. The effects are many from losing our hair, feeling sick to our stomach, head pounding, many more aches and pains, site reactions, possible cancers and many days in bed trying to recover from many other effects. For many the struggle is whether or not to even take the medicine. This too is a fight that many go through because of this disease.
Deformities – There are many that are unfortunate to have an aggressive form of RA and face many deformities. They have to watch each day as a part of their body change right before their eyes seeing it no longer working the way it use too. They are forced to use canes, walkers or even wheelchairs while many may be bed ridden. This is what this disease can do to you. The disease that many believe to be just a minor pain until they see the deformities.
Inabilities – For many the inabilities slip in on us before you know what happens. You wake up one day and realize you can no longer do many of the things that once were so easy for you. Your abilities that meant so much to you have gone away leaving you hurt and angry at a disease that has control of your life. The smallest of things have become such a challenge making you feel useless and full of blame for having to step back because you can’t step up and do what you know needs to be done and what you want to do.
Guilt – We feel guilt which is a nasty word that should not be a part of our illness but it is right there filling our minds and heart with foreboding. We feel this way because we are unable to do the smallest of things so we blame ourselves even though our biggest wish is to do what we need to do and what we want to do. Guilt is always in the back of minds making us feel worse even though none of this is our fault. We long to be the way we once were and to be able to do what we once could but we know that is impossible no matter how much effort we put into trying to get things done.
Loneliness – We never knew getting this disease would cause so much loss. First our abilities and then those in our lives. Because this disease is overwhelming and so debilitating and causes so much uncertainty, it causes many to turn and run. It never lets up so the struggle is constant therefore the journey is forever changing. Dealing with a life of uncertainty, inabilities and one of constant pain can be too much for many to handle so they realize life around Rheumatoid Arthritis in any form is not for them. For those that don’t physically leave they may emotionally leave. Which pain is worse!! We need understanding and support to make it because we are struggling in every way there is.
Understanding – One of our biggest fights. We long for understanding not just of what we’re going through but of this disease. We believe if people understood the most important thing about RA, they would understand us better. The first thing that should be understood, this is not our grandmother’s arthritic ailment, it is an autoimmune disease. They would understand that for us each day is unpredictable and we cannot control it. For each of us that has this disease there is a person in our lives who does not understand it and what it puts us through and they may never reach out to try to learn about it or care what is happening with us and this is what it’s like living a life of loneliness brought on by the lack of understanding.
So these are the words that binds us all as we go through the trials and tribulations of Rheumatoid Arthritis. With these words we cannot deny that we share more in common than we do with most in our lives. We will be forever connected and be forever the support and understanding for each other when no one else is there for us..