So what’s fibromyalgia and why should I care?

When you share your diagnosis with someone, you can expect a range of reactions, depending on the condition. Cancer? Sympathy and sadness. Man flu? Derision. Inflammatory arthritis when you’re not obviously old? But you’re too young, but mostly, ouch, that sucks. Fibromyalgia, on the other hand, gets a whole range of its own, from “huh?” and “fibro-what?”, to “I knew someone with that, they were so lazy” and “oh, you mean hypochondria?” and “that’s just a name they made up to keep neurotic women happy.”

Very rarely, you get someone who actually has a clue, and whose response is “you poor thing, that’s awful. Let me know if you need anything when it’s flaring up.” And that kind of reaction might sometimes have me in tears, and other times wondering just how hard it might be for the rest of the human race to be that decent.

I’ll be honest, I underestimated what a chronic fatigue condition can do to people. Which is silly, when you consider how much of my upper sixth I lost to glandular fever. But it’s easy to forget how debilitating things can be, if you ever knew, and there are times I’m not proud of where I probably gave a less than sympathetic response to someone. If you’re one of them, I’m sorry.

So if you’re here because you put fibromyalgia into a search engine to find out what your friend or relative has, this one is for you.

What’s the worst thing about fibromyalgia?

That’s actually quite a tough one to answer. At times I would say, all of it. The pain is no fun, having no energy to look after yourself or your child, unable to do so much as read a book or watch a box set on Netflix? Also very little fun. Crashing and having your core temperature drop a couple of degrees because your body has so little strength it’s had to prioritise one key process like digestion over another key process like maintaining body temperature? Not a party, either. Knowing that if you draw on every last reserve you have you can do one thing, but that you’ll pay for it for days after? Yeah, that sucks, too. There’s other stuff, of course, but these are for me the worst bits, and the very worst of all is the being unable even to rest peacefully when you’re so far beyond exhaustion you’re practically in tears and you can’t sleep, can’t settle for the new and interesting ways your body makes you feel pain, and can’t concentrate enough to distract yourself.

OK, that sounds pretty grim. But you can take something for that?

If only. The thing is, once upon a time the doctors thought fibromyalgia was an auto-immune condition, which is one of the reasons that rheumatologist departments seem to make – anecdotally – most of the diagnoses. That’s how I was diagnosed: my OT said I should ask my rheumatologist about fibromyalgia, since I was due to see him in an hour. He asked if I minded him prodding me and then proceeded to make me scream when he palpated what I later discovered were the pressure points so common in fibro patients. That hurt. But he was pleased because, as he said, it was obvious, really, and he should have thought of it before. For a moment I had hope, because that sounded like there was hope of a treatment, but he soon cleared that up.

Fibromyalgia, it turns out, is a Central Nervous System disorder. By all accounts, they don’t know what causes it, and they don’t have a cure for it, and right now they don’t have any treatment for it, either. While there are some people who benefit from taking pregabalin, gabapentin or even amitriptyline, I react very badly to those drugs: suicidal ideation, hallucination, insomnia are all present, and it’s not like I sleep much anyway. It makes no sense to persist. So there we are, incurable and untreatable. If there were any clinical trials I’d be first to volunteer, because the hope of something to make my life normal again is too much to pass up. However, there are no clinical trials into fibromyalgia running local to me, and maybe not even elsewhere in the UK. Not that I’m in a fit state to go anywhere if there were.

So where do we go from here?

I wish I knew. In the past, even medical professionals needed some persuasion the condition exists. I can recall asking the neurologist I was seeing about my migraines whether fibromyalgia was a possibility, some time around 2008. He said someone with my psychiatric history – depression, as they thought at the time – would be unlikely to receive such a diagnosis. In other words, he thought it was all in my mind.

Most of the ‘treatment’ on offer is group therapy and CBT. It’s about learning to cope with the fact you’re stuck with it, not giving any real tools to reduce the impact of the condition on your daily life. I’d love for a meditation or some affirmations to actually work for me, I truly would. Who wouldn’t? But nothing I have tried has helped to date. My rheumatologist doesn’t sugar coat things. He doesn’t know of anything in the pipeline that will help. And that brings us back to the question in the title.

Why should I care about fibromyalgia?

The chances are high that you know at least one person with fibromyalgia, or CFS/ME, or Lyme disease, or PCOS, or something that has similar impact. The best thing you can do for that person is to try to understand. Be that one person who says “I get it, this is horrible. What do you need me to do?” And follow through. Whether you just offer to pop round and keep them company, or to help them tidy up a bit, or to get some shopping in, or just to give them a gentle hug and fetch them a cup of tea, understanding there is nothing they can be doing to change their circumstances and just accepting and loving them for who they are is the best gift you can give them. Life is hard enough without having to battle lazy stereotypes and ignorance. Having one or more people who understand is priceless.

You should care, because one day it could be you or a loved one. Because kindness costs nothing, and because being a dick takes so much more effort. Because doing something nice for someone who is beyond exhausted, in pain, and struggling just to exist might make you feel good about yourself, while making their day a little easier. And because that person is facing more battles every day than most people will ever realise. Be the friend you’d like to have if you were the one who had this, and believe them when they tell you what they’re going through. It’s little enough, but it can mean the world.

Kick me when I’m down

Picture the scene: there’s a woman in a wheelchair ahead of you in the pedestrian area of a nice city. You may or may not want to see her, because nobody likes to see disabled people going about their lives. After all, we’re a reminder that human biology is frail and that Bad Things can happen to seemingly normal people. People like you. But for now, just look at her. She’s pale, tears streaming down her cheeks, and she’s looking around her, desperately seeking eye contact with the strangers that pass, while repeating the same two sentences, over and over, stuck in a terrifying loop: “He punched me. That man just punched me.”

You have a choice. You can walk on by, and there will be no ill consequences to you for doing just that and leaving her – in shock and obvious distress – in the middle of the street while you continue window shopping or appreciating the architectural beauty of the place. Or you can stop and talk to her, ask her how you can help, reassure her she’s safe and help her find a police officer to report the crime. Your choice, whatever that may be, and it stays a secret between you and your conscience.

If I were to ask my eleven year old son what he would do in this situation, his answer would be swift and clear: he would talk to the woman and ask if he could help, or bring her to his parent’s attention and get them to help. Because in his view, that is what a decent person does. So you can imagine how it is that I have been unable to tell him about this incident. I am the woman in the wheelchair, and not one of the upstanding citizens with whom I made eye contact that day stopped to help, uttered a word of reassurance, or sought a police officer to help me in their stead.

Having only minutes before found myself on the street that inspired Diagon Alley in the Harry Potter series, it was as if I’d stopped to buy and put on an invisibility cloak while I was passing. In shock, suddenly freezing, and alone in a sea of people consciously ignoring me, I was trembling. The threat had gone, the man who punched me and the person with him moving on through the streets like nothing had happened. Like somebody hadn’t assaulted someone for the sole crime of being in a wheelchair in a public place. Finally able to summon a couple more words, I asked a market vendor where I might find the police, and rolled, still shaking, up the street towards a police van, looking around for the hi-vis vests that would signal safety.

I was fortunate that I was eventually able to contact friends in the city, who came to find me and make sure I was out of harm’s way, ate lunch, and had a drink before I returned to the Dales. Once I was safely at home, I tried to take refuge in statistics – facts over feelings, trying to use logic and knowledge to overcome the emotional impact. I found that the number of disability-related hate crimes recorded in 2016/7 increased by 53% over the previous year, which in itself was an increase of 44% over the year before. And that while the government report into hate crime for that period suggests the sharp increase is likely due to improved recognition and reporting by police forces, the figure may fall far short of the actual numbers. Public order offences, in particular, are likely to be under-reported, with many disabled people becoming accustomed to verbal abuse and threatening behaviour when they’re out and about: in my experience, just daring to use a wheelchair space on a bus can be incitement enough for some people to let rip. So while I’m used to catching all kinds of pleasant epithets when I’m out and about, I was probably naive in thinking it would never go beyond words to actual assault. But all the rational consideration of the facts doesn’t lessen the impact of what happened that day. If only.

Maybe at this point you’re thinking that I should be moving on and dismissing the event as a horrible one-off, happy in the knowledge that this is not the rule, but the exception. I wish I could. Last Thursday, almost two weeks later, I had to go for a routine hospital appointment in Harrogate. Other than making sure to charge up the wheelchair battery, I didn’t give it much thought beyond making sure I allowed time for the journey and parking at the other end.

I sat behind the wheel and started driving. The further I got from home, the more I struggled to breathe. My chest was tight, I felt sick, a feeling of inexplicable dread bringing me out in a cold sweat on a hot day. Pushing on through to Harrogate was torture. Air con on full, consciously taking deep breaths in a desperate effort to ward off the light-headedness that threatened to have me pulling up far short of the hospital and bolting for home.

If I had been hoping that the return journey would be easier, since I’d at least be heading toward the protection of home and a door I can lock against the world, I was disappointed to meet with a repeat of the outward anxiety attack. Approaching Threshfield I felt so light-headed I knew I couldn’t continue and had to stop at the garage. Stepping from the car, my legs useless and rubbery beneath me, I feared I would pass out and leaned against the hot metal of the passenger door, gulping in warm air beneath a beautiful blue sky, and wondering where the oxygen had gone.

At some point in all this, I have lost the outwardly confident, determined me, to have her replaced by a fearful creature, unable to consider leaving the house on her own without bringing on another anxiety attack. I have had to tell H what happened because he couldn’t understand why I was non-committal about my chances of going out yesterday – to the shops or anywhere else – and that I spent much of the afternoon struggling to breathe or get warm. My son now knows that there are people out there who would physically hurt his mother for going out in her wheelchair, and that such actions can have a lasting impact on the mental well-being of the victim. He knows that the social contract is so badly broken that people won’t help a disabled woman in distress when she so clearly needs it.

My attacker walks free. The CCTV was pointing the wrong way, and the police have no way to find him unless, emboldened by the impunity with which he assaulted me, he decides to do it again somewhere the cameras can catch and follow him. And so I have to hope he remains free, because I wouldn’t wish this experience on anybody. The only person facing consequences for that moment is me, and I’ll probably never know why. Just that in that moment I wasn’t human to him, just someone he could attack without risk to himself. Just being disabled made me a target. A victim.

I don’t know which part of the experience has caused the most lasting damage. Is it the knowledge that I’m fair game to some people? Or is it that I now know for sure that, if shit happens, I am on my own?