When doctors don’t believe my pain

An angry piece about pain and being dismissed by medical professionals. Mentions of physical pain, doctor visits, pain medication, S, SH/SI, brief/mild emetophobia warning

Sometimes it feels like there’s a guitar string pulled tight across my shoulder blade, and it hurts. Or the muscle leading from my neck to my shoulder is rock solid, and the tightness and pulling sensation is constant, some nerve somewhere is taut and screaming. Not much helps, but I try everything.

This shoulder pain inflames an anger towards a physiotherapist I saw a while ago, my neck had frozen up and seemed to be made of steel cables, all screaming with tightness. I hadn’t slept. I had been up wandering the streets at 3am because I couldn’t sleep and shared a single room with my partner. I was beside myself. I was in tears. She said I had full mobility and that I was young, the patients she saw were elderly and could hardly move. ‘You just don’t deal with pain very well because you have anxiety,’ she said. ‘Pinched nerve? There’s no such thing’. My neck still hurt.

Being in pain makes me feel useless. My plans are all awry, the plans for my entire life, my plans to be well and not repeatedly rendered useless by pain or fatigue nobody can find a cause for. My plans to not be a sick person (I’m a carer for my disabled partner — we can’t both be sick), to not be alone, to not be triggered into another bout of black, destructive depression, to not be abandoned by society and at the mercy of a government that wants me to work or die. It’s true, I don’t deal with pain very well.

I wish my shoulder pain on her, so she could feel it. In both shoulders. I want her to feel the tiny, needling, insistent cheese-wire sing. It’s in my left this time, usually it’s the right. I’ve had it for 3 days. I’ve had to take an increased dose of my pregabalin to ease the pain, and I’m in a mental fog. I’m angry, I’m hurt. I feel like she’s right. I’m weak and entitled and privileged.

Sometimes I wonder what it is about me that makes doctors disbelieve me. Maybe somewhere on my file, somebody has written, ‘borderline’, or ‘personality disorder’. (I don’t have this diagnosis, but for a while recently my file said that I did, though I was laughed at when I suggested the possibility to a counsellor when I was about 19, because I wasn’t ‘manipulative’ enough). Or maybe it’s just that I have a history of anxiety, and that I present as a woman. But recently I’ve realised the problem is that I don’t challenge these aggressions.

I should say, ‘no, this isn’t good enough, try again’, when doctors dismiss me. That has never occurred to me in the moment. I might stare in disbelief and slink away, bristling with rage, but the words to stand up for myself never come, they’re not in my vocabulary, and anger strikes me dumb. The grammar I use is self deprecation. This is why I have a litany of experiences with doctors which I’m furious about. They’re unresolved. I’m terrified of conflict. I know that the buck stops with whoever is behind the desk. I just get what I’m given and I go home and cry. I don’t have any power, I don’t believe I have any power. I am a little girl. These wouldn’t be traumas, if only I’d just refused to accept them. But nobody ever taught me I could do that.

There are all these men in my head, sneering at me and telling me to go away. Migraines with aura, at 12? Take paracetamol. Don’t bother checking what you’ve been prescribing me, the contraceptive pill, for my acne, which is known to cause migraine. Obviously I am just talking about a headache. Obviously I am exaggerating, I don’t really lose vision in one eye, forget how to read and speak, and then lie in a dark room in agony, vomiting up the pathetic paracetamol and praying for the pain to end.

Depressed? Go for a jog. Headaches? Why did you really come to see me? Think you’re pregnant at 17? That was careless. Go to the [sexual health charity]. Where is it? I don’t know, I don’t live round here. Want to die again? What do you want me to do about it?

When I was 14 my dad saw the cuts on my feet where I’d tried to do it somewhere nobody would see — I could only cover so much with bracelets, and everyone thinks you’re looking for attention when you’re just looking for relief from the numbness and pain — and he took me to the GP, and he grabbed my arms and showed them to the doctor. And the doctor said, well, it looks like you’re going round in circles, doesn’t it? And then they referred me to a mental health team. Because seeing something carved into your body, and the demands of a man, those are real. No sense in actually listening to me when I talk about my pain.

So when you sanctimoniously tell people to ‘just see a doctor’, if you’re wondering why I’m sweating and having palpitations in the waiting room and scared for my life — being dismissed hurts, it hurts and it damages. Doctors get things wrong, and that’s fine, but when they’re the gatekeepers to getting help and you feel helpless and powerless, when it took everything you had just to show up, and when they won’t acknowledge the limitations of their knowledge or the reality of your pain. Then you end up with baggage. Then you end up educating yourself and finding others with your experiences and looking at alternatives. And yeah — googling our symptoms.

We cannot place our unquestioning trust in doctors because that trust has been repeatedly broken.

I don’t mean you shouldn’t see doctors — I see my GP regularly —I’m sure she’s sick of the sight of me — but it’s hard, I cant always see the same person, and it feels like a russian roulette of competence or total callousness.