Posted in Advocate, NHBPM

#HAWMC Day 4: I write about my health because…

Today’s Prompt: Reflect on why you write about your health for 15-20 minutes without stopping.

One day, awoke to find that my life was about to change. When I was first diagnosed with rheumatoid arthritis and six months later, fibromyalgia, I struggled to find a new identity – one that didn’t involve chronic illness.  I felt like if I accepted that RA and fibro were here to stay that I would somehow be powerless when it came to getting better or having a normal life. I wanted to force my life back to the way it used to be. I wanted some control of my body and I thought that by denying the changes that were happening that I would have some kind of control. I thought that my denial of the diseases in my life would allow things to stay the same and that I would not have limitations or adjustments to make.

It took time but I eventually realized that I am not powerless to make my life with RA and fibro worth living and worth fighting for.  Needless to say, before that realization, I had entered a very dark period in my life that I plan to never to go back to.  Once I admitted to myself that I had no control of chronic illness as a factor in my life and that my life was different, I knew I could still have a good life despite the limitations posed by my chronic illnesses.

As time has passed, accepting that I am chronically ill and still able to have a normal life changes from day to day.  In that sense, acceptance is like a spiral.  When I am able to accept that I am sick and that I have limitations, I find better ways to cope. However, I have my moments where I feel like I am back at square one trying to understand that some things are just out of my control. In those moments and in those experiences, I find that sometimes I just need to stay down to find my way back up. A new symptom, new feelings and just finding that I have to make more changes are all setbacks for me but they are always opportunities for new realizations.  

So I write…

I write about my health because there are so many out there who feel alone in their feelings. As chronically ill patients, the biggest issue we have is not our health.  It is the challenges and the difficulties we have in our personal and professional lives that pose us the biggest challenges.  Four years since diagnosis and many years of symptoms prior, I learned leaned that that the one thing all of us want and can’t have is understanding.  We want others in our lives to see the impact that chronic illness has on us both physically and emotionally but it is hard to get people who do not live with your illness to understand what they cannot see or feel. So, I write so that others do not feel that their emotions are wrong or unusual.  I write because I know that chronic illness is a lonely journey and no one should have to go at it alone.

I also write about my health because it is my outlet to dealing with it. Living with RA and fibro, it is the day to day reality towards managing my illnesses and trying to create a balance in my life that is a challenge.  My goal, despite chronic illness, is to have a “normal” and full life. Trying to create that balance in the three areas (personal, professional and illness) of my life is hard and trying work. So I write. I write so that I can cope and so that I can see what is in fact in my control and what truly isn’t.


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