I recently received an email from a newly diagnosed rheumatoid arthritis patient named Sam, who writes,
I am 37 year old husband and father who about three months ago was diagnosed with rheumatoid arthritis. It is hard living with this disease and so many people in my life tell me that I need to accept this diagnosis so that I can move on with my life. I am afraid that if I accept the diagnosis, the disease wins. It feels like the disease is already winning and I just want the pain to stop so that I can go back to being the husband and father that I was before my diagnosis. How do I get there?
Acceptance is one the toughest things that anyone of us has to do. Whether we are accepting the loss of loved one, moving to new town because of a job transfer, getting divorced, or accepting that we have to live with sickness and pain, acceptance isn’t easy. With RA, the sooner you accept your diagnosis, the sooner you can work on being healthy. I know that this really does make much sense but from experience, I know that it is a process and it takes time and trial and error to learn to how to best live with RA or any other chronic illness.
When I received my diagnosis, I promised myself that RA would not win and I remember the feelings of fear, denial, numbness and skepticism. My emotions changed from day to day and even several times a day. Feeling hopeful or optimistic were a long ways down the road and acceptance – well, that was something I never thought would happen. In the beginning, I promised myself that RA wouldn’t win but all that happened was that I became depressed even though I insisted to everyone in my life that I wasn’t. The only thing that kept me going was that I knew that my children needed me to be their mother and rheumatoid arthritis didn’t change that.
My new diagnosis felt like a death sentence and the information on the internet made the disease look like something that would disable and disfigure me in five years time and end my life in ten years. A few months after my RA diagnosis, I was also diagnosed with fibromyalgia and the blurry reality of what was my life started to become clearer. I had spent ten years trying to find answers and one day I had them. What I realized at that point was that I had the power to heal because I had already started to find out how by searching for and finding answers. As a result, I started to educate myself and arm myself with information about rheumatoid arthritis and fibromyalgia that made sense. I sought support from others who were living with the disease and I knew that if I wanted to get better, I had to accept that a handful of pills weren’t enough.
I also looked at my life as lesson after lesson of patience, strength and survival. Having RA and FMS were the same as any other struggle that I faced in my life and they would probably be easier than some of those struggles. When I looked at diagnoses as just another thing that made me who I was, I learned to accept that I had no control of what happened but I had control of the response as I had when other obstacles impeded my life.
The person that I was at that point in time was already prepared for RA and FMS and while it wasn’t easy or clear at first, I accepted RA and FMS in my life not because I wanted but because I had to. Of course, it wasn’t easy to get to that point and steroids, a lack of energy, physical pain, and weight gain can take a toll on you and really blur your vision. You lose a lot of friends and there are a lot of people who don’t understand but what the illness doesn’t control is how we respond, how we fight back and how we go on the defense against the war waging inside our bodies. The disease doesn’t get easy but we start to realize how exceptional we are to be able to overcome so much.
Why you should RA in your life
One you are diagnosed with RA, any other autoimmune disease, or chronic illness, it will always be a part of your life and the sooner that you accept your diagnosis, the sooner you can learn how to live with your disease. It is also how you will cope and how you will learn to understand that your diagnosis isn’t a death sentence. The only thing that your diagnosis has to be is something you have to live with and once you accept it, you can learn how exactly you will do that.
Rheumatoid arthritis is kind of like life with its all ups and downs but living with RA is even more complicated. It is never ending rollercoaster of pain and emotions. There is also about a lack of understanding amongst your family, your friends, your coworkers, and even complete strangers. It is about living life without knowing what tomorrow will bring and it is an emotional battle on a daily basis. Moreover, it is a bitter pill to swallow and unless you accept all these things, you will never be able to get past your diagnosis.
How you accept RA in your life
In order to accept RA, take a look at the advice you have received – pace yourself, manage your condition well, educate yourself, advocate for yourself, surround yourself with emotional support and don’t let the disease define you. This advice is your guide through the rollercoaster of symptoms and emotional setbacks. The only thing that can prepare you for the next flare-up is experience.
There will be days where your pain and fatigue are under control. There will be days when you feel productive and that you are in control of your life and your body again. It will not feel like a death sentence forever. On the other hand, there will be days that it will feel like the disease is in control when you are in pain, you are tired and you can’t focus or get anything done. The disease doesn’t get easier but getting through those really bad days does get easier.
As a long time sufferer, I have learned that there can be more good days by making good choices. You have to do all the right things like eating right, taking your medications, being active on good days, and resting on bad ones. It is a learning process like anything else in your life and the setbacks; they are part of life too. You can’t control the setbacks regardless of how well you plan and a flare-up can come on at the worst possible time. All you can do is wait to feel better and you can’t always predict how many good days you will have so try not to overwork yourself because you don’t know when your next good day will be.
Understand and remind yourself that RA is unpredictable. There is not much that you can do except to realize you have to adjust and adapt to the moments that the disease brings havoc to your life. While it doesn’t define you as a person, it can still define your life. The best thing you can do for yourself is to accept that you have to be flexible to live successfully with RA. The disease might be your new reality but learning to be flexible means that you accept RA in your life not that you give up. Your life will never go back to “before your diagnosis,” but it can get close to it if you open your mind to what you need to do to get to that point where you can accept diagnosis in a way that means you don’t give up. ***
If you a question related to RA, Fibro or chronic illness you would like me to answer, please feel free to send me an email to firstname.lastname@example.org and I would be happy to answer your question. Be sure to put “Blog Question” in the subject line so that it does not end up in my junk folder.