Pain is a universal experience that helps us to survive. A person who can’t feel pain has a significantly reduced lifespan because pain serves a purpose – it tells us when to stop doing something that is harmful to our body. Leprosy is a great example. It is caused by a mycobacterium that creates nerve damage resulting in the lack of ability to feel pain. The reason why people with leprosy, or Hansen’s disease, lose limbs, and have such horrible disfigurement is that they don’t feel pain, so they injure themselves and don’t seek medical attention.1 Pain is the reason most of us decide to go to the doctor, so in some ways, pain is a guardian angel.
Try telling yourself that during your next rheumatoid arthritis flare!
The trouble is that when pain becomes chronic our guardian angel becomes an ogre trying to imprison us at all costs and destroy the life we’ve so diligently set up for ourselves. Chronic pain is a different animal altogether, one that medical science and healthcare has no idea what to do about. In the U.S. the answer typically is to prescribe opioids, and then when people start dying from the treatment, to stop treatment entirely. In other countries, fear of opioids, societal influences, and a pharmaceutical industry that focuses on profit, not low cost medications, has a created situation in which many people have no access to opioids- even in extreme cases like burns and end stage cancer. Consider this: in 2009 two-thirds of major public cancer hospitals in India did not stock opioids, and WHO estimates that 80% of the worldwide population lives in places with limited or no access to pain medications.2,3
Different types and intensities of pain
If pain is a universal experience why, in 2017, are we still dancing around the issue of how best to treat it? Why are so many people suffering needlessly when others are dying from treatment?
These aren’t easy questions to answer, but as someone who has lived with pain for 98% of my life I can say managing my pain has been the focus of my life, and it hasn’t been easy. Pain is complicated. It takes time to figure out how best to minimize it and the answer can be different for every day of the week. Sometimes my pain is caused by weather and that pain is different than the pain I experience when I walk on my ankles that have severe joint damage. The pain of a flare-up is different still. If I was to give a full and complete answer every time someone asked about my pain it could takes hours, depending on the day, and we all know that is just not possible in a medical setting.
The official definition of pain by the American Pain Association is, “an unpleasant sensation that is subjective in its interpretation and has an emotional component associated with actual or potential tissue damage.” That very clinical sounding mouthful says a lot without saying much. It tells me that someone can use the tired old excuse, “It’s all in your head,” when they can’t find a reason for your pain. It also shows me why the medical world is so afraid of it; there are two land-mines in the definition for most doctors- the words subjective and emotional. Science has little time for either of these words and yet here we are. Pain, as the book The War on Pain says, is what the patient says it is.
All of us living with rheumatoid arthritis are stuck in this quagmire and although at times it can feel extremely lonely, you are not alone. There are millions of us standing alongside you, trying every day to ease their own pain. As much as I rely on and admire the efforts of pain researchers and people on the front line treating pain, right now I know that the real expert, the one that will give me the best advice about what to do, is me. Along with the millions of people who live in my shoes, who often give me ideas about new things to try, me and my body are my most trusted advisors when it comes to my pain.
The truth is there is no magic bullet for pain, and there may never be. Instead, there is exercise, rest, heat, massage, hot springs, saunas, acupuncture; there are a myriad of ways you can decrease your pain. Eliminating it totally may not be an option, but I’ve found that when I make the effort on behalf of myself and my life to minimize my pain, I always feel better.
My medical team will do everything they can to control my disease and when I can’t keep my pain down I always have the option, because I live in the worldwide epicenter for opioids, to take medication. But mostly it is me and my lifestyle, one that encourages my pain to let go. And for now, I’m okay with that.