I recently watched the movie “Cake” with Jennifer Aniston. In it she plays Claire, a woman who, having survived a terrible accident, suffers from disabling chronic back pain. Claire manages by popping addictive painkillers, and the film shows her struggles with her addiction and how she copes with the pain. While at the beginning of the movie I wasn’t sure if I liked Claire, I soon warmed to her and could certainly relate to her and the enormous pain she endures in her everyday life.
It’s not often that a movie centers on the rather unsexy topic of chronic pain, and Aniston’s portrayal of a chronic sufferer is very convincing. Chronic pain rarely features in the media; however, according to the British Pain Society, recent estimates suggest that up to 28 million people in the U.K. suffer from chronic pain, while in the U.S. it is almost 50 million, according to the American Pain Society.
I have been suffering from two chronic pain conditions for most of my life – migraine since my early teens and chronic pain in my left shoulder and neck since the age of 17. It started with a diagnosis of bursitis. Various treatments followed, but the pain stubbornly remained.
Over the years I have received different diagnoses and treatments. I have tried all sorts of things to get rid of the pain: TENS, muscle relaxants, acupuncture, massage, injections for pain relief, a lot of physiotherapy, different painkillers, psychotherapy and cognitive behavioral therapy (because some doctor thought I was imagining my pain and it was all psychosomatic). The pain stayed.
In spite of the pain I managed to finish my master’s degree in art history, English and philosophy, trained as a journalist, found work in a PR agency and went backpacking in New Zealand, where I met my husband. I also managed to set up my jewelry business and simply get on with life.
It wasn’t easy, though.
Three years ago, I was finally diagnosed with hypermobility syndrome of the joints (HMS) – a condition that presents itself in different forms of severity. People with HMS have more flexible joints and can move their limbs into positions others find rather difficult. Gymnasts, ballet dancers and athletes often tend to have HMS but without suffering pain, and indeed it can be an advantage for them.
Over the years I have learned a lot from living with the pain: what I can and can’t do, how to take care of myself and still have some quality of life. Here are five things I have learned:
1. Listen to my body and pace myself
I used to spend hours working on my laptop, ignoring the pain steadily getting worse. What followed were bad episodes where I couldn’t do anything. As soon as I felt better I would just continue as usual and the whole cycle of extreme pain, rest, recovery and extreme pain would follow. Something had to change.
Now, I listen to my body more carefully, take frequent breaks for gentle exercise and try to take things a bit slower. I found that my morning and evening yoga routine has been helpful too, as the pain is at its worst in the morning and evening. I also use hypnotherapy apps and CDs for relaxation sessions and have adapted my work space so it is more ergonomic.
2. Have empathy for other people
From experience, I know how brutal pain can be and how frustrating it is when you feel you are too disabled to do anything. I have friends with chronic conditions such as Lupus and ME who also suffer bad pain episodes, and whenever they post about it on Facebook I can instantly relate to their plight. I also know that suggesting things they could try to ease their pain is not helpful, because whatever I’d suggest, you can be sure they have tried it. People who are suffering from chronic pain conditions know their body very well. I also created a free support group for migraine sufferers on Facebook.
3. Have patience
When you suffer from chronic pain, you need patience. With my migraine episodes, I know they will have an end, and then I can get back on with my life. It’s a bit trickier with my HMS. On good days I don’t notice it as much; on bad days I find it hard. However, I know that because the pain severity fluctuates, often correlating with work stress or worries, bad days too will pass and that I should not put pressure on myself to get things done when I simply can’t.
4. Kindness – be kinder to myself and others
Taking care of my health means also being kind to my body. I incorporate breaks for relaxation in my day, and I try not to beat myself up when I am too poor to function. I realize that it’s not my fault that I have chronic pain, so I cut myself some slack. And this also goes for the people I know and love who suffer from down times in their lives. Sometimes just meeting up with a friend for coffee or surprising them with other acts of kindness can lift their spirits.
5. Live in the moment
When my pain is manageable or tolerable, I try to make the most of it and not think about the pain too much. I consciously enjoy my work and being active. That also goes for being in the company of my friends, husband and our cat.