I often say that there is more to me than just living with rheumatoid arthritis and fibromyalgia. That is the highlight below my blog title and the truth is, I want to really believe that to be the case. However, when I feel like I am out of control when it comes to living inside my body, I am not sure that I am any further away from defining myself any differently than what my diseases identify me to be.
Living with RA and fibro means often leaves me this state of influx where I cannot quite describe who I am currently and whether I have any control of my fate or my future. I think that people have this notion that this is the fear that only new patients feel but that is not true. Living with chronic illness is a constant cycle of revisiting fears and doubts. It is hard because we are part of a society that identifies people by the things they can do and the influence they have.
While I know I matter to my family and friends, I don’t always feel I am capable enough or that I can give enough in my life or to the people in my life. Four and half years later, I still wish RA and fibro did not hinder me from accomplishing more – whether it is in my career or whether in my personal life. I just feel like in so many aspects of my life that I am settling and I would not have done that before being chronically ill.
That is why I often wonder whether I am more than just my diseases. If they dominate my day to day, my overall career path, my relationships and all the things I want to do, then how can I be any more than my diseases? I continue to dream about remission like it is some answer to all my problems but achieving remission is like finding the Holy Grail. I am not going to be the lucky one to find it. And when tasks just as cleaning my home leave extremely tried, how can feel like I can accomplish much? Life shouldn’t be that hard.
They say time always us to find peace with things that affect our lives. I am not sure how you can do that when you question what tomorrow will be like or whether you will be disabled in four to five years. While I worry about the future and I know that I can never get away from RA and fibro, I am not really convinced that these diseases are the dominating factor in my life. They may have control of a lot of things in my life but they have never controlled how I have fought back.
I never sat back in the sidelines and let RA and fibro win and maybe I let them redefine me rather than take over my life. I stood up for awareness and I stood up for myself by taking control of my health. Maybe I am not more than just my diseases but I made a choice to allow that to work for my advantage. Of late, I have been part of a great campaign called Everyday RA Victories (More details to come on this) and I have been doing great things as a Patient Advocate for Arthritis Connect, Rheumatoid Connect, and Fibromyalgia Connect and I don’t plan on letting my diseases being the deciding factor in my life anytime soon. So, yes sometimes I feel like I am not anything more than my diseases but if that is truly the case, I am still fighting back.
Very nice post! I find myself thinking about how my Chronic Pain defines me all of the time. As much as I would like to think that it does not, after over 6 years it HAS become a way that I identify myself. Maybe the difference is that many of us try to see it as a challenge that we live up to, as opposed to a reason to be nothing else. Keep up the good fight!
Thank you for visiting and taking the time to reply. Chronic pain does have a way of definng our lives. After all, it is part of who we are, like it or not.
Very well put. I think of myself as a very positive person and also know that many have it worse than I do. BUT, with that being said when you hurt and don’t sleep and it is all the time it is really hard not to have it be part of who you are because those things shape you. It is not as if we want it ,it just comes as part of the package. I used to never talk about it, then I went overboard and talked about it too much. It just takes over you sometimes. I have been dealing with the O.A. and fibro and a few other little presents that came with it for at least 30 yrs(it took over 20 to get diagnosis) Before no one knew how or what to do about it. It still is unknown. How can we help it, let’s face it, it is a very big issue in our lives. People need to understand, we don’t want that, in fact we don’t want to have this condition and we want our lives back. We don’t want the drugs that could kill you. We don’t want the loss of income from the inability to work. There is just nothing about it we do want. Thank you for sharing!
Hi Linda. Thank you so much for visiting my blog and taking the time to read my post. I sometimes say I want my body back and that I am tired of disease holding it hostage but I know that my body will never really be mine ever again. I want to accept that but I can’t. It is hard and sometimes, venting is all we have.
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