It can feel like being unceremoniously dumped into a new world, a new planet, when you realise you’re chronically ill. Maybe it comes with a diagnosis from a doctor, or maybe you’ve been carrying it around for some time now and finally—finally—you’ve realised that you’re just not like normal people.
But that’s OK.
In a way, you are now living in a different world to everyone else, a world overlapping the normal world, of which you are still a part—only separated by degrees that will change and differ over time, entirely dependent on how you’re feeling. Sometimes you will spend weeks in your own little world, lost between pain and a fatigue so deep you think you’re no longer flesh and blood and bone, but rather hewn from solid fatigue and exhaustion. And that sucks, but you’ll be OK.
You will emerge from your little nest and step, blinking, back into the normal world, where things will have moved on without you and you’ll probably need to flip your calendar over. That’s OK too. You’ve just been through a flare of symptoms, where, one way or another, you’re certain your body was trying to destroy you from the inside out. It wasn’t, and you’ll forgive it. Until next time—and there will be a next time.
But next time you’ll be ready, your nest will be better equipped. You’ll know a little more what to do. Next time you’ll be able to ask for help, because it won’t take you entirely by surprise.
You’re chronically ill and the flare has gone, finally! You feel great—
—compared with how you felt for the last two weeks.
Ouch. Hurts, doesn’t it? And that fatigue—you could sleep for a month and still not feel better, right?
That’s OK—you’ve just reached the normal equilibrium that follows naturally after a flare. You felt so much better that you thought—you hoped!—that you were better, that you were normal again. That it had all passed.
It’s still there, I’m afraid, and if you don’t go easy, you’ll trigger a post-flare flare, which can be unforgiving and worse than the initial flare. Like the aftershocks of an earthquake that can cause more damage and loss of life, these post-flare flares can catch you at your weakest and crush you.
I know you don’t want to—neither do I. But deep down you know what’s best, deep down you know you’re not normal anymore. So go easy. You’re sick. Don’t push yourself. Let others help you. Ask for help. Reach out.
There’s no shame in it. No shame in receiving help. Maybe it’s so bad you can’t work anymore. Maybe school and college have become impossible dreams. Maybe that quaint little weekend job in a bookstore will have to be replaced by another little dream, something else.
It’s OK to cry. Go on. But you have to let go of the person you were. Maybe you’re not so sick that your entire life has been tipped and flipped around; but maybe you are. I am. I know how you feel. It hurts to suddenly lose the person you were.
But it didn’t happen suddenly. It’s been coming for months, maybe years. Maybe your whole life. Maybe you’ve always been more tired than everyone else, always had closer limits. Maybe you’ve had the pain for a while but thought it was normal, somehow. You assumed that everyone has aches and pains and everything else. Nobody ever talks about chronic illness and pain so maybe you didn’t even know it existed at all.
That it existed. That it was something I might have. Even with the pain and the fatigue that were slowly worsening, slowly eclipsing everything else, even then I didn’t affix the label of “chronically ill” to myself. I just didn’t know.
Then it happened. That one person on that one website who suggested, “maybe it’s fibromyalgia?” when my extensive symptoms were listed. That’s when this new world I lived in began to make sense. That was when everything around me cleared and shifted into focus. I was chronically ill. In fact, more than that: I was disabled. The doctor concurred. Written in concise hand on a slip of paper. Fibromyalgia.
But it’s OK; fibromyalgia doesn’t mean you’re disabled. It might do, and it might get worse. But not necessarily. Just because I need a wheelchair doesn’t mean you will. Not all chronic illnesses lead to that. It depends on the person, on which way the cookie decides to crumble. Age doesn’t matter. I’m young and my fibromyalgia disables me. It doesn’t matter if you’re not a forty-year-old soccer mum. It’s not just women, I’m afraid, despite what you mostly read.
And you’ll do a lot of reading on fibromyalgia, trying to understand what’s happening to you. This can sometimes be frustrating, because if, like me, you’re neither female nor middle-aged, you can wind up feeling alone in this new and strange world you’ve landed in, with no familiar place of haven in sight. You feel alone—but you’re not. I promise you’re not alone.
Maybe you can’t work anymore, maybe you can’t do the sports you did, maybe you can’t handle the gym, maybe, maybe, maybe.
But I’ll tell you a secret: you can still be You even with chronic illness, even with a condition so insidious that it affects every single aspect of yourself. It will not change you at your core if you do not let it.
You can and will find a way to be You, to be that unique and special person you’ve always been. You just need help and support and to stay calm. So maybe you’re going to have to become a master accountant with points of energy you’re inevitably going to start calling “spoons”—but that’s OK, because you’re a rockstar and you can do this. You’re a warrior and you can fight.
You’re a Fibro Warrior. Don’t believe me? Write a list of the things you go through every single day of your life—and then take a look at a normal person. Your list is twice as long, You go through so much. And walk right out the other side. Or wheel, or crutch, or crawl—it doesn’t matter how because you’re still moving. Slow and steady and sure, on the path to wherever you’re going.
It will be hard. The fatigue will fight you for every step you take, every little thing you do, every time you raise your head in defiance of your illness. But you will be OK. Never lose sight of yourself, never push beyond what you can and never be afraid of saying “no”—even to yourself. Sometimes you’ll have to let yourself down. You’ll have to say “no”, have to bail on something you dearly want.
And that’s OK. Hard and painful, but OK.
This illness isn’t going away. That’s the truth. But you’re not going away either. You’re here to stay, to fight and to push and to live and to dream. To do all the things you were going to do before you were plucked from normality and stretched between two worlds. Differently, yes, slower, maybe—but you can still make dreams and achieve them. Still be true to yourself through the storm.
Sometimes you will reach the eye and things will be calm. Cherish that calm. Use it to plan how to weather the next phase of the storm. Build your defences, understand how you react to your illness, and become the best defence you can. It probably won’t be an epic battle plan. It won’t involve much, but it will teach you how to care for yourself. And you’ll pass that onto others.
You’re a firework, baby, and people want to see you shine. And when you’re too tired to go on, people will be there. They will help you keep moving or shelter you from the storm when you need to pause. It’s OK to pause. Pausing isn’t stopping.
It’s OK to rest before you get back up.
You’re chronically ill: you’re going to need more rest and care and self-care than normal people; more than the people who don’t live with spoons, who don’t have to manage equations just to take a shower and get dressed. And some people won’t understand. And that will hurt. Some people will attack you for it. Some will ridicule you. Some will dismiss you.
Fuck those people. They don’t matter. And if these people are close to you, don’t get angry at them. Just love them. Tell them you love them and that you know they don’t understand and that’s OK, because you know they still love you. Don’t waste your precious spoons on anger and stress that will make you sick and may trigger a flare. Their opinions don’t have to matter.
You are not broken or damaged. You’re simply ill. You didn’t choose this, but you choose how you live with it. You can make all the choices from here on out. All of them. You can still be in control. You can still shine. And you will. I believe in you. So believe in yourself.
Sometimes having a chronic illness might feel like you’re constantly walking through a boulevard of all your broken dreams, your life, your future, on hold, with no one to pick up the call. It doesn’t have to be that way. Cry it all out—rage and cry again. That’s OK. Be angry and hurt and scared and cry some more. That’s OK, too.
Chronic illness is hard. Sometimes you’ll get things right; you’ll get things wrong. Let them all go and carry on walking. You’re a warrior; you’re stronger than you think, than you look, than you know. But someone close to you, they know. They see. Maybe they don’t know how to tell you—maybe they tell you all the time. It’s OK. They’re struggling too. It’s hard to see someone suffer. But it’s OK.
And when you can’t sleep, don’t focus on the negative, the bad, the things that go wrong and keep you awake further. Let them go. Take a breath and look around. You don’t have to be alone when you can’t sleep. Go to another world: read, watch a movie, listen to music, play games. Escape and let your mind run free in another world where there are no limitations on you. You’ll bring back that strength in the morning and you’ll face the following day stronger and fortified.