8. “You’ve brought this on yourself. You were so determined to be ill that you’ve talked yourself into it.” Yeah……cos I’ve got THAT much control over every one of my involuntary physiological processes…I must be some kind of Indian Guru or something. Where’s my medal? And if I’ve got such an awesome level of control over my health, how come I can’t make myself well again? I wasn’t “determined to be ill,” you moron; I just knew something wasn’t right a long time before any of you did because I live in this body. Do you seriously think I purposely, deliberately screwed up my happy, productive, independent, joyful life? The one I had Before All This? There is no upside to be crippled by some mysterious illness that no-one can find a cure for. Well, maybe one: it strips away shallow friendship, sorts out the real “friends” from the fake. Only trouble is…..you’re my blood family, so what am I supposed to do with that?
9. “You’re doing it for the attention.” My Mother said this to me once – actually, she’s said it way more than once, as have a lot of other people, family and “friends” alike. The first time she said it, I said in amazement, “What do you think my flat looks like, Mum? Do you think I’ve staged my bed in a downstairs window on a busy public street, where I put my symptoms on show for the benefit of passers-by, possibly selling tickets? Or do you think I live on the first floor, with my bedroom at the back of the building? I see no-one from one week to the next! How is that getting attention? I’m alone!” The majority of attention we get is negative – from Normals, from medics, and all too often from family. No-one wants negative attention.
10. “How are you?” When a Normal asks one of us this, our heart sinks. Why? Because it’s clear from your uncomfortable, irritated response that you don’t actually want to know how we are. You don’t want to hear us telling you that we collapsed again on Friday, or that we wanted to kill ourselves on Tuesday, or that we had another migraine on Monday, or that our new meds are giving us a whole new bunch of vile side-effects to work out how best to manage. You don’t want to hear how lonely we are, how desperate we feel, how alone we feel. You don’t want to know. And who can blame you? It must be so tedious for you, so boring. Some of you have even stopped us mid-sentence with the cutting “I’m really not up for hearing about this. I don’t understand any of it. Tell me something positive for a change!” It’s a dagger through our broken hearts. So we learn to reply, “Fine, thanks,” and plaster on a smile that would only convince an idiot. You always seem convinced. If you don’t want to hear how we are, stop asking us!
11. “What have you been up to lately?” As above, our heart sinks. Nothing, usually, and that is so not what you want to hear, is it? What have we been up to? Lying in bed, too exhausted to get up and dressed. Or lying on the sofa, alternately huddled in fleecy throws because we’re freezing, or baring as much skin as possible with all the windows open whilst we drip with sweat because we’re boiling hot. Attending another endless round of doctor and hospital visits. Throwing up. Crying. Having migraines. Guzzling pain killers. Falling over. Struggling to cope. Wondering why no-one in the whole medical profession seems able to help us. Having to consciously decide whether to use what minuscule amount of energy we have on getting to the bathroom, or getting something to eat. Wondering if it’s ever going to get better. Researching ways of getting well, searching for that one piece of information that will give us the key to the doorway of heath. Trying to find something interesting to tell you so we don’t drive you away with the tedium of our existence.
12. “You need to do some exercise, instead of rotting in your pit all day.” Haven’t you heard? Chronic Fatigue Syndrome has been renamed Systemic Exertion Intolerance Disease, or the marginally less unwieldy SEID. Physical exertion makes us worse. Making it to the bathroom is like climbing Everest in a headwind whilst carrying a couple of dead bodies. Movement kills us. We shake. We feel sick. We feel dizzy. We get violently pounding headaches. Our muscles spasm. Our joints ache. Our nerves stab us with fiery blades. It hurts us. It exhausts us. And then we collapse, wondering if this time we really are going to die.
13. “You look well!” It took me 2 days to make myself look presentable by your standards. I’ve made a huge effort with my hair, clothes and makeup, and I’m rattling with extra meds. I know that later today, or tomorrow, I will be forced back to bed again, probably by tears of pain, or nausea, or a migraine, or exhaustion. If you say this to me when I haven’t been able to clean myself up, I don’t understand what you think you’re seeing. When I look in the mirror, I see someone with empty eyes and a broken soul, someone with sweaty armpits and an incontinence pad strapped in place. I am a shadow of my former vibrant self. I struggle to see even a vestige of the old me. The illness that remains invisible to you is all too visible to us. And that’s not including the monstrous mental misery that enmeshes us on a regular, yet erratic, basis. That’s only looking at the external appearance.
14. “It’s all in your head.” Well, d’uh, where else would my brain be? In my ankle? But that isn’t what you mean, is it? What you mean is it’s in our imagination, that we just *think* we’re ill. You have no idea how long it took for us to accept that we ARE ill. We fought it tooth and nail. We refused to accept it. We still have days when we’re in denial. Fibro and PTSD brains are stuck in Red Alert, Fight Or Flight mode, and to that extent you’re right. Our brains control everything, every hyper-active response, every inappropriate reaction to external and internal stressors alike. Our brains control our digestion, our inter-cellular communication, our hypersensitive nervous and immune systems, every bodily and mental process you can think of, including sleep. With fibro and PTSD, we are prevented from relaxing enough to reach the deeper levels of sleep, the Stage 4 stuff that allows Normals to wake up refreshed and well. Oh, I’m sorry, I forgot – you aren’t interested in hearing any of this, are you?
15. “Stop it now. There’s no need to cry.” And there I was, thinking I was actively solving the world’s drought problems……We don’t cry because we think there’s a “need” to, we cry because we can’t help it. We need sympathy and reassurance, not chiding like a naughty child. Sometimes we just need someone to hold us and tell us it’ll be okay, even though we find it hard to believe it will be. When we’re out of hope, it helps us if someone close can be hopeful FOR us.
16. “I had a friend/ relative with fibro. She got better.” Great! Now give me all the details of how she managed to do that. What’s that? You don’t know? So you’re telling me this why? To make me feel deficient in my efforts to get well? What? To be helpful? That’s about as helpful as telling a starving man that you know where there’s food, without telling them where!
17. “Everyone gets tired.” Sure. After they’ve done something. We are tired from the second we wake up. Sometimes we’re MORE exhausted after several hours sleep than we were before! And the pain is so very much worse on waking, possibly because (partly) it’s the longest time we are without pain meds.
18. “Everyone forgets things!” Brain fog, fibro fog, whatever foggy prefix you want to apply to it, is a lot different from occasional absent-mindedness. It’s trying to claw your way through sludge to a name, a process, a piece of crucial information that seems to have been erased from your brain. It’s forgetting which light switch controls which light. It’s forgetting to eat. It’s forgetting how to eat. It’s having no memory of leaving a pan on the hob, and wondering what that strange smell is. It’s a number of things, and absent-mindedness doesn’t come close.
19. “I hate to break it to you, but it’s your age.” Gimmee a break! I’ve been hearing that since I was 30. It’s not my age, it’s my illness. Conversely, “You’re too young to be ill!” Hey, guess what? Illness doesn’t care how long you’ve been on the planet. It is indiscriminate. It doesn’t care if you’re old, young, middle-aged or anything in between. It doesn’t care if you’re kind or cruel, good or bad. It doesn’t care if you’re rude or polite. It doesn’t care.
20. “I think you’ll find that the more you do, the more you’ll be able to do.” I think you’ll find the more I do, the more time I’m forced to take out to recover. Doing more makes us sicker.
21. “If there was anything REALLY wrong with you, they’d have found it by now.” And yet they haven’t. Is it possible, do you think, that I simply haven’t found a doctor yet who is familiar with my illness? If you have a worn clutch on your car, an exhaust specialist won’t spot it. We get sent from one specialist to another, have every test known to medical science (or so we’re told), often to no avail. In my case, it took me more than thirty years of begging the medical profession for help before I got a diagnosis of fibro, and when I did, both rheumatologists who diagnosed me independently of each other, in their respective different hospitals, did so within 10 minutes flat. Sometimes, it’s a question of identifying the correct specialty before the cause of our illness can be identified. And sadly, with fibro, there is no cure. There is only “management”.
It is possible that there may well be further parts to this……! X