I know that, pain aside, I am incredibly fortunate in almost every other respect, and that I could be a lot worse off. I also believe that chronic pain is widely misunderstood. In the name of increasing understanding, this got a bit whiny; please excuse me.
What’s the first thing you think of when you wake up?
A close friend asked me this a few weeks ago. I chuckled a bit, and began to mumble something inane, when I stopped. This was a close friend. Why couldn’t I be honest?
‘It sounds a bit depressing,’ I said, ‘but pain. I think of pain.’
I live with chronic pain and, time spent under the influence of drugs or alcohol aside, have done so for as long as I can remember. Call me naïve, but until the age of eleven or twelve I genuinely believed that this was the case for everyone, and that my own pain was just a bit worse than other people’s. My pain is located in my legs, feet and back, and fluctuates in severity from a nagging ache to crippling agony. On a good day, I barely think about it. On a bad day, I can think of nothing else. Sometimes, a bad episode is self-inflicted; I might have walked too far, or slept in an odd position, or done too much exercise. More usually, it is spontaneous. On any given day, the severity of my pain dictates almost every decision I make, from the clothes and shoes I wear to the places I go. Despite this, chronic pain is something I rarely discuss except when amongst close friends and family. I consider myself a pretty open person, happily broadcasting to the world my latest fracture or diagnosis. But chronic pain is different.
In my experience, discussion of chronic pain will generally provoke three forms of response. The first is a frustrating attempt at empathy; with all due respect, claiming you know how I feel because you once broke a toe is a bit like me claiming to know what it’s like to be blind because I once wore a blindfold. Even more frustrating is the second form of response: ‘there must be a solution, you just haven’t looked hard enough.’ A taxi driver once told me he was convinced I would be cured of all pain if only I tried googling my complaints. A friend of mine, (worryingly, a medical student,) was incredulous as to why I didn’t ‘just take painkillers.’ The amount of time, effort and money my mother and I have spent on attempts to cure my pain does not bear thinking about. I’ve tried yoga, meditation, Alexander Technique, cold baths, hot baths and circulation therapy. I’ve tried every kind of medication, pain management technique, diet plan and weird herbal concoction I have ever been recommended. I’ve tried steroid injections and surgery, healing crystals and prayer. Few were in any way helpful, and some made things significantly worse.
Sunshine and a strict physiotherapy regime make my pain marginally more manageable. Alcohol and/or drugs will sometimes ease the pain altogether, but the strength of painkiller needed for that is simply not compatible with leading a functioning, fulfilling life. Yes, I’m sure morphine was great fun that time you had your appendix out, but try writing an essay or going to work while you’re on it and you’ll see what I mean. In fact, I’m lucky that, when I’m desperate, morphine still does the job. There are many people whose chronic pain is so severe that no painkillers exist to help them. The speed with which medical science is advancing is incredible, but human understanding of pain is still lacking, and there is no such thing as the miracle cure of which my taxi driver was so convinced.
The third response is awkwardness, because chronic conditions make people uncomfortable. Tell a friend you’ve caught a cold, broken your arm or need your tonsils taken out, and they will (hopefully!) tell you to get well soon. It’s easy enough to say, and both parties will feel better for the sentiment. But what do you say when the prognosis is chronic and likely to get worse?
The truth is, a little understanding goes a long way. Chronic pain is usually invisible and always subjective, which makes it easy for others to forget about. A person in chronic pain might take longer than usual over certain tasks, or might need a bit more sleep than most, or might not always be able to go out when they want to. Knowing that your own body can’t keep up with its owner is immensely frustrating, but knowing that others understand why you are the way you are is a huge relief. My pain is constant, but with a little understanding and a helping hand when needed, it does not have to define me.
Please click here to read the Spoon Theory, a really great explanation of life with a chronic condition. I don’t have lupus, but I do have spoons.