“I never thought you could get a disease from a car wreck”
I totally wish I could take credit for the above quote but I cannot but WOW how true: I never believed I could get a disease from riding my bike without a helmet in my young teens. Chronic pain comes in so many forms and there are so many different terms/diagnoses for this invisible illness: RSD, CRPS, Fibromyalgia, and you probably are aware of the rest. When I was on my search for a cure to the relentless physical pain I lived with I not only wanted a cure, I wanted a diagnosis. It would have been easier to say to people: “I have Fibromyalgia and that is why I live with pain every day.” However, I do not have fibro and even now if I had a definitive diagnosis with a proper name it wouldn’t really matter. Pain is pain. Invisible pain is invisible pain. When I first entered the Pain Rehab Center at the Mayo Clinic in MN, I was shocked because in my group of people I would spend a month with not many “looked sick.” How contradictory, right? You would think, we all sat around talking about our disease, our diagnosis, where our pain was and just cry and cry but out of thirty people, I maybe knew why three had chronic pain. It really did/does not matter where/how/or what your diagnosis is, we all have an invisible illness called chronic pain. We did talk about the emotions and turmoil that come with living in pain twenty-four/seven: depression, anxiety, worthlessness, a loss of will to live, and that is where the real pain lied with most of us. As most of you know, I learned how to manage pain without a cure or medication and many of the people in my group at the Mayo Clinic left there with no cure to their physical pain but a desire for life and living happily despite chronic pain. However, when I first got there I was pisssed. I wanted to talk about my pain, my accident, my dozens of surgeries, how sad and miserable I was and just basically have a pity party. That didn’t happen and I was so confused as to why we were not talking about pain! I went back to Colorado to get my Social Work degree a month later with a much better understanding as to why we did not sit there for a month talking about pain. If we had done that, I would have left more down and depressed than I was before entering and probably would not still be alive today.
There are times I am forced to talk about my journey with chronic pain. I am having a very small procedure done next month (nothing to do with pain and I’m perfectly fine) and I had a meeting with one of the nurses who will be with me that day. I guess it is quite difficult to miss: BRAIN SURGERY in someone’s medical files. I had to talk about my life with chronic pain for about ten minutes and I did get that look of pity and a look of shock when she read about all the surgeries I had trying to fix chronic pain. She asked me: “So, what do you take for pain? Who do you see for pain medications and help?” I quickly responded: “I don’t take anything for pain. I manage it naturally and don’t feel bad for me that accident that resulted in my disease in many ways has been a blessing. We ended up talking about other things as the meeting went on but as I left she again looked at me, almost perplexed and said: “Not many people have brain surgery and live to tell about it much less have chronic pain and is not on an opiate.” I just said: “Make sure your kids wear helmets when riding their bikes. My life with chronic pain has been both a blessing and a curse. My whole story is on the internet if you want to know more.” I handed her a business card and left. One of the perks with sharing my story with the world is that I do not have to talk about pain: buy some business cards and hand them out. Done. I do not like pity, I love empathy but nobody ever wants to be pitied. Think about that for a minute and question yourself as to why you do not want pity for chronic pain. I mean that. Go on. Why do you not want pity? Whatever your reason may be, may just be the thing that helps you cope with pain and focus on your health and happiness; forgetting what anyone/everyone else thinks. I do not pity my readers but I have so much empathy I can at times feel your pain and my God it brings me back in time. Try going a day without mentioning pain, just a day. If you make it through a day, try two days. We have to get our minds off of what we do not want and onto what we do want. Train your brain to not think about pain. Much easier said than done as I still have difficult days or hours but they pass and one day chronic pain will not control your life, it is a process. You are not alone.