I wonder if you could take five minutes to try something.
It’s just a short imagination exercise.
Can you imagine what it might be like, to get a terrible flu? And how it would be if that terrible flu never, ever went away? After one week, the patience of your partner wears thin. After all, there are kids to look after and he is working, he’s not a naturally great nurse, guys are like that… you’re sure your girlfriends will have stories to share about their men, too, when you’re better. You’ve a job to get back to yourself, you can’t keep on waking up, saying you can’t and shutting your eyes against the day.
Then imagine that being sick carried on for a whole year.
Fifty two of those flu weeks, end on end on end. The family needs you, so even though you still feel like you felt for that first week in bed, you get up and carry on. Every time you move the dizziness sweeps over your world as your body struggles to find some equilibrium. You are bone weary. You adapt your usual tasks so you can do them. Sometimes you crawl. You lean against any surface you can. You avoid bending, or standing quickly, because that might make you faint. It beggars belief how many household tasks require bending.
You take on less hours at work, but quite frankly, your boss has had enough. You, who have always been a perfectionist, have become an unreliable employee, your sick days are mounting. You talk to them about what is going on, but the doctors haven’t been able to give you any answers. Your boss, your colleagues, your friends and even your partner start to look at you as if you might be making it all up. Surely if something was really wrong they’d know what was up with you? Maybe you are not trying to get better? Maybe you are psychologically broken, somehow? I mean, it must all be in your head, you look perfectly normal. You doubt yourself. You quit your job. Your relationship is under pressure. The kids are acting out because you are struggling to do your parenting job too. The years stretch out. One, two, three.
You’ve been in and out of hospital more times than you can count. It is now clear you are not manufacturing the things that are going wrong with your body. They put in a pacemaker to make sure your heart keeps beating. But there is an endless litany of other things wrong, too. You are afraid of dying, because sometimes, it feels like you are. There are moments in the emergency department when everyone is buzzing around you and there is nothing you can do but shrink your self into a tiny observational dot on the wall. It is too scary. Your partner doesn’t even come with you to the emergency department anymore, it’s better for the kids. You taxi in to emergency, always with a bag. You know you will be admitted. You don’t know for how long. In your many visits to the hospital a picture is slowly beginning to emerge. You start to research the things that are happening to your body. Something keeps coming up on Google. The Autonomic Nervous System. You ask about it next time you are in. Chins are scratched, thoughtful silences. Referrals. Specialists. A diagnosis.
You’ve been sick now for four years. 208 of those flu weeks, end on end.
Can you imagine what it might feel like to get a diagnosis? You are relieved, so thankful to have a way to explain what is wrong with you. Even to yourself. There is a thing that you have! Now that they know, they’ll be able to fix it, right?
And can you just imagine your distress when you discover that the diagnosis isn’t the end of the struggle… just the beginning? You’ve been lurching through a long distance marathon with the flu, you are exhausted, always waiting for the reprieve, the finish line, the bit where you get to stop and recover. They tell you that what you have is rare and it will be hard to find someone here who understands it, let alone who has ideas for treatment. You research more. You join online forums, patient groups, you read everything you can. You print out and highlight medical journals and read them, searching terms on the internet, desperate to find a way out of the maze. You put forward medication suggestions, based on your research. Every single treatment you are on that is working has been suggested by you. Even in hospital, you have to educate the registrars who come to see you. It makes you feel vulnerable. What if you are missing something important? You don’t have a medical degree, you are nervous when you know more than they do about it. You email research to your doctors. The nice ones might look at it, the others might ignore it. Much like what they’ll do with you.
Then you find a group, online. They all have what you have. There is sharing, and laughter and illness related humour (yes, it exists!). There is compassion and kindness and expertise. Resources and empathy and support. You are not alone. The relief is enormous. You’ve been fighting for help for six years now. You feel a different kind of worse every day. Once upon a time you used to dance. Sometimes you struggle to walk down the street and back again with your cane. Your life is light years away from the way you were before. You don’t know if you will ever get back to the fork in the road where everything went wrong, so you can step back onto the trajectory you believed you were destined for. If you are honest, you fear you won’t.
You’ve been sick now for six years. 312 of those flu weeks, end on end.
There are worse things, it’s true. Some people like to remind people like you, that you’re lucky you don’t have cancer. You’re not sure how comparing illnesses is helpful. It doesn’t change your suffering. Your cardiologist once talked about how people with your heart problems are ‘functionally disabled’ and literature from the States talks about you having the quality of life of someone with congestive heart failure. But that’s not helpful either. Your reality is you don’t have YOUR quality of life, the one you relied on, based your decisions on, built your plans on. I’m sure you’re grateful you’ve got your marbles. Glad that you can still walk short distances. Thankful that you can hug your family. Maybe you’d just like to enjoy those things without feeling like crap. Maybe you miss the connection between wanting to do something and being able to, just because you can.
What if all the things about your identity, the things you knew to be true, aspects of your personality, the things you do, the way you get around, your career, your parenting, your partnering. What if all of those things were compromised, because you got something like the flu and it never, ever went away?
Thank you for sharing my journey, for 5 out of the three million, one hundred and fifty three thousand and six hundred minutes I have been sick. If you can imagine how this is, please be kind to the people you know with chronic illness. It is a hard, hard road and we need your kindness.
Can you imagine?