Pain Awareness Month
September is officially "Pain Awareness Month", which was first established in 2001 by the American Chronic Pain Association (ACPA). Since then, several other organizations have jumped on board to inform and educate the public about chronic pain and pain management and to support pain awareness during these 30 days. The U.S. Pain Foundation is one such non-profit organization that has some interesting things going on during September.
The chronic pain of rheumatoid arthritis
When I stop to think about what "pain awareness" means to me during this time, I try to reflect on how pain affects my daily life and what I want others to know and learn about it. And while I often desperately want people to understand what I'm going through, and what I've gone through for the last 22 years, I realize that chronic pain is a very complicated and complex thing - especially when its cause is RA.
Understanding the impact of RA pain
As we probably all know, RA is invariably a wildly erratic, confusing, and unpredictable disease that can change on a whim. And for this reason, it makes trying to understand the illness and the pain quite difficult - for myself as well as others.
To me, in no particular order, pain is:
- With me all the time. Every day. Every night. At every job and on every holiday and birthday and vacation. I've been in pain every single day (to some degree) since 1997. Can you wrap your brain around this? I can't; it seems unreal. But it's true. My pain is real and it doesn't go away. EVER.
- Looking "normal" and healthy on the outside when in reality every movement that I make causes indescribable pain, and I feel sick and exhausted and anything but healthy. How am I supposed to reconcile these two different versions of myself? I don't know. It's not easy. And it's not easy for others to understand what I go through when I don't look sick on the outside.
- Damage. Destruction. Only after about a year since being diagnosed with RA, my right wrist became permanently damaged due to a flare-up that basically never went away. Inflammation ruthlessly attacked my wrist, causing severe pain and swelling and disability. By the time I had arthroscopic surgery on it, a synovectomy, it was too late. The inflammation very quickly ate away all of the cartilage in my wrist and even eroded some of the bone.
So, since age 20, I've had a grotesquely lumpy, painful wrist, attached to a hand that will never be able to bend normally again. If you look closely, you can also see the five tiny white scars on my right hand, a reminder of a once-healthy body part destroyed by disease. And since 2005, my right ankle has been in a similar situation (long story!).
- Grief. Sadness and longing for the things I've lost, the things pain has stolen from me. Before getting RA, I was an active kid who played several different sports, played the piano, drew and painted and created artwork. I loved riding my bike and going on walks and just running around outside. I had dreams and goals of traveling the world and living an exciting and adventurous life. When the pain and sickness of RA struck, I had to close the piano lid for many years and put away my basketball and softball glove. Racing around on a tennis court, just hitting balls back and forth for fun with my cousin, abruptly ended. So many things ended.
Even starting college, a new beginning, was full of loss, because I was learning how to cope with living with this horrible thing that assaulted my body day and night. I couldn't do college the way I wanted to. I could barely hold a pencil. I couldn't do anything the way I wanted to, and I cried a lot for all of this. I still cry and grieve for the person I was before RA took over my body and my life. This grief never fades away.
- Emotional pain, which is often harder to deal with than the physical hurt. Chronic pain messes up your body and messes with your mind. It opens the door to overwhelming feelings of anxiety, fear, loss, grief, frustration, panic, depression, and self-loathing. Pain also steals your energy, inspiration, motivation, and confidence. It tells you that you're not good enough, you're broken, and you'll never be "fixed" or whole again. It demoralizes and punches you hard when you're already down.
- Exhausting. Chronic pain is so, so, so very exhausting. I should feel happy and proud if I get any little thing done in a day, instead of constantly kicking myself for not being more productive, more focused, better organized, a better person. Chronic pain saps and sucks all strength from you, however. It never lets up. And that is truly exhausting.
- NOT my identity. I'm forced to live with it, and fight with it, and accept it, and totally not accept it. Pain is a very real and large part of my life, but it's not my life. I fight hard every day to not let it totally consume me.
There are many more things I could write about my pain and the myriad of ways it shapes my life--for good and bad. But this is just a start, and I hope that by writing this, more people can understand and truly see what it's like to live with chronic pain.
When was your last flare?