I Live With Pain I Don’t Believe Is Real
I doubt every second of that pain. Sometimes, this is as agonising as the pain itself.
In my family, chronic back pain is practically a rite of passage.
My father built an entire career based on the skills he learned whilst bedridden from back problems. My mother and aunt have both seen chiropractors regularly for as long as I’ve been alive. I was raised in a family where back pain was constant, and no less serious for being so common, because for years I had seen people unable to get out of bed as a result of that pain.
In a strange way, I was proud when I developed my own back problems. Only this time, as the one suffering, I came to understand that the rest of the world did not see back pain as this overwhelming, debilitating thing that I did. I saw multiple doctors, all of whom prescribed me painkillers and told me to wait it out. One referred me to physical therapy at the local hospital — which did not work, in large part because I didn’t do the exercises regularly.
Like those outside my family, I had also begun to trivialise my pain.
At the same time, my mental health had deteriorated. I have chronic anxiety and depression, and suffered a nervous breakdown at the same time as my back pain manifested. Some of the characteristics of this illness are a lack of self-belief and self-trust, and an unhealthy amount of disconnection from my feelings. Combined, my mental illness and the repeated doubt of health professionals made me start to doubt that my back pain was real. I began to mock it as this constant but unimportant presence in my life, whilst still wearing it as a badge of pride.
By 2014, I was waking up in so much pain that I felt like vomiting, and I still thought that I was lying about it. I began to battle with my internal doubt, making a point of talking loudly and constantly about my pain. I didn’t know what else to do with it. But talking about it did not convince me it was real — if anything, it made things worse. Because I could not articulate how much pain I was in, or how my doubt was leading me to ignore necessary things like taking painkillers.
That year I finally went to see an osteopath, who did something incredible: she believed me, wholeheartedly. She told me that she thought my pain was caused by mild hypermobility, held at bay by my childhood dance lessons, flaring when I stopped those classes age seventeen. She showed that my muscles and connecting tissues were so tense that I had one leg longer than the other. Over the course of six months, she bent and wrenched and prodded and stabbed my body back into some semblance of function. In fact, after seeing her, I didn’t have any more severe pain for a long time.
I wanted this experience to be transformative, and for a long time I thought it was. But looking back on it I can see that it wasn’t as life changing as I’d hoped or thought. My osteopath demonstrated things that I could not question: yes, there clearly was a huge knot there in my shoulder. Yes, when she gently brushed this one particular spot in my lower back it was oddly agonising. Yes, I could feel that my hip joint was opening up more as a result of what she was doing.
But even as I celebrated those realities and clung longingly to the diagnosis that someone had finally given me, doubts crept in. I’m not double jointed. I’ve never been very flexible — I know this, because of the aforementioned fifteen years of dance classes. I’m not inflexible either, but I could do none of the nausea-inducing hyperflexion that characterises hypermobility. I wore the badge of hypermobility, all the time wondering if the badge was a lie. But my pain was mostly gone, so I did not think about it. I ignored what remained of it.
The thing is that when you ignore something, it doesn’t actually leave. Over the years, my back pain returned in bits and pieces. I suffered extreme joint pain at one point that doctors told me was B12 and Vitamin D deficiencies, but again, I doubted what I was being told. Even when I would call for blood results and be told I had dangerously low levels, by someone who was genuinely looking at tests done on my real blood, I still wondered if it was wrong. Because of course I was making it all up. That was just the sort of person I was.
Over those years my mental health drastically improved. I’m not cured, because that’s unlikely ever to happen — but a psychiatrist once told me I was. Even in the mental health system, which in all other ways had been good to me, had genuinely saved my life, I was still subject to that disbelief. I was discharged as a hospital outpatient and told that I was asymptomatic.
This almost broke me. I knew that I struggled through most days in mental and emotional agony. In a ten minute conversation, that psychiatrist reinforced all of my terrible thoughts, all those creeping doubts, even as part of me was screaming if I’m cured then why does it hurt?
I never went back to that hospital. I reminded myself that a decade of doctors and psychiatrists and loved ones had not been lying too. I really was ill. I was not making it up. Even if I was making it up, that in itself was a symptom. The pain I had in my head and my heart was real.
Then, this year, my physical pain returned. At first it was tolerable, then it was intolerable, and in the past three weeks I have been in constant, terrible pain. Sometimes it has been so bad that I have stopped in the middle of the corridor and started sobbing. Some days it has rendered me unable to do anything at all. At one point I found a microwaveable wheat bag in my spare room and, when I put it against my back, burst into tears at how much of a relief it was.
Part of me still doesn’t think it’s real.
Earlier today, I walked the fifteen minute walk into town to get painkillers. I remain terrible at taking them regularly. I have to fight to make myself do it, because that doubt gets in the way. I need someone — my husband, my best friend, my family — to tell me it’s okay to take them. That I’m in enough pain. But after a moment last night where I wanted to scream in agony, I was determined to go to the pharmacy and ask not just for painkillers, but something strong enough that it would actually help.
We live on a very large hill, so the walk wasn’t easy. I could feel tension in my shoulders and neck. My left hip joint, which my osteopath had always fought with, was tight and uncomfortable. My knees were aching to the point of pain. At times I could feel a stabbing pain in my middle back, and the rest of my back was in constant pain. Here is what I was thinking as I walked:
Is it still there? Can I feel it? I’m not sure I can feel it. No, there it is, in my hip. But that’s just stiffness, not pain. It isn’t important. Oh, there’s a stabbing pain in my back! It’s not really that bad, though, is it. It’s not constant. Maybe I shouldn’t go and get these meds. I’m just making a fuss. It’s not that bad. I’m just doing this to avoid working. To avoid writing my proposal. I’m lying because I’m lazy.
If you take one thing away from reading this article, let it be this: the pain of doubting myself is just as bad as the pain in my actual muscles.
I have left myself untreated and in agony because I am so afraid that this isn’t real, whilst all the time longing for people to acknowledge the pain I am downplaying. I have then used their lack of acknowledgement to reinforce those doubts. I have lain on the bed, hurting so much that I am crying, telling myself that I am an awful person for being so lazy. I have been utterly, completely horrible to myself.
And as much as I don’t want to do that to myself anymore, it’s still there. It’s still in my head. Getting it out is as hard as copying with every ounce of that pain. It’s only now that I’ve started to get the strength to endure that alongside the pain itself.
Maybe it’s my mental health being overall better (though it’s flaring along with my pain). Maybe it’s that I have a group of incredible friends who have been acknowledging and validating my experience. Maybe it’s that I’ve reached a point where I feel okay asking my husband and family for help. But this past few weeks, I have started to be able to challenge that doubt just a little bit more.
I did go to the pharmacy. I didn’t just get painkillers — over the counter, maximum strength — I got more wheat bags and a hot water bottle and a promise to myself that I would spend as long as I needed to caring for myself. I got an appointment to see an osteopath tomorrow afternoon. And soon, when I start seeing my new therapist, I will make sure to talk to them about my relationship with my pain.
My pain that is, no matter what my brain tries to tell me, very, very real.