I wonder if you could take five minutes to try something.
It’s just a short imagination exercise.

Can you imagine.._(1)

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 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?


18 thoughts on “Imagine”

  1. Rachel, My thoughts were full of you when I was sick (so sick! (and yet not really that sick)) with the flu last week. I did imagine, and I couldn’t imagine. I had not been that sick in twenty years, I calculated. 20 long healthy mostly taken for granted years. I did imagine, and I couldn’t imagine. That life can turn on a dime, that we never know what’s around the corner, a health scare, a terrible diagnosis, a car crash a sick kid. It’s too much to think about, and yet it forces me into gratitude for what I have right now. I did imagine, and I couldn’t imagine. My thoughts were full of you. x

    1. Oh, sweet girl! I hope your flu passes quickly and you find your healthy place again soon. The flu is truly awful. So hard to be the mumma and be sick. I hope you are being looked after, too.
      Have you ever listened to Tim McGraw’s “Live Like You Were Dying”? It is such a beautiful song about life and feeling grateful. I love it. Feel better soon, lady. X

  2. I can’t imagine! Not really, but even reading this made my heart heavy. What a ” insert really bad word here” condition to end up with! How positive that you can share with and educate others , you must be one strong woman. Sending kindness your way x Emily

    1. Thanks Emily. Using my words for a purpose has really given shape to my days. I heart blogging, it is an awesome way to connect with a wide world of people and try to explain things to those who want to hear. Thanks for being one of them X

  3. I don’t have to imagine because I’m terminally ill. We need to pull on all of our inner strength, and it’s often hard having to count on other people, so I generally try not to. Comparing illnesses is like comparing apples to oranges – it’s just a redundant exercise (and quite stupid, I believe). Stay strong and be kind to yourself xoxo

    1. I agree, it’s not a helpful or useful exercise Carly-Jay. I am very sorry to hear of your illness. Hope you have found some ways to be kind to yourself today.
      Arohanui X

  4. Rachel, what an amazing way with words you have – to be able to explain to someone how it must feel to live life with a chronic illness. I feel for you and your family and hope that the days get brighter someday soon <3 Arohanui xx

  5. So brutally on point. I also have ANS dysfunction, and there wasn’t a single sentence in this entire article that was overly dramatic. Many young people are sick, have no idea why, and are constantly dismissed by friends, family, and even the doctors treating them.

    What helps the most in cases like this is really intense psychotherapy; learning how to find value in yourself again. Learning how to accept that you may never get better. Learning to find happiness in an illness that has its ups and downs, that there are days where you feel like you can conquer the world, and days where you can’t get out of bed to make it to the bathroom. It’s hard work, but absolutely essential to restoring at least a little bit of your quality of life.

    Thank you for posting this Rach.

    1. Yes, Josh. I agree, psychotherapy is a crucial aspect of the care plan for people with chronic illness. I am very grateful to have a great health psychologist who helps me grapple with these things. She is currently helping me with exercises that help me cope with my thought-tsunamis.
      Sorry to hear you have ANS problems too. 🙁 But very very glad that you are managing to find happiness within illness.
      You are so welcome, for the article and also welcome here. Thanks for joining in the discussion!

  6. Dear Rach, Your courage to express yourself like this is incredible. I know that your previous ‘work’ has always been about supporting others to learn, but this special gift; the opportunity to understand someone else’s situation, that you give through your blog is immeasurable. XXX

  7. This was a fascinating read Rachel. Despite you describing it all so clearly, I still can’t imagine… It sort of reminds me of the way my Granny talked about ageing: the frustration, confusion, and disappointment that comes with your body not being able to do what you want it to do, what it used to be able to do. Except, of course, we expect that with ageing.

    And I understand what you’re talking about with all your treatments coming from your own research – and the mix of feelings that come with that. We are so fortunate to have access to fantastic medical facilities and knowledge, that it can be scary and frustrating and confronting when the medical professionals we rely on don’t have the answers. I’ve come up against this with myself and my children. It really makes you take a step back and realise that as far as we’ve come, there’s still so much we don’t know about our own bodies, health, diseases and so on.

    Thanks so much for giving me an insight into something I’d never heard of or considered. You’ve clearly got a lot of strength to keep plodding on and fighting, despite everything. Again, I just can’t imagine…

    1. Hi Bridie. I think it is just part of the human condition, we all do our best every day… because what else is there to do? 🙂 Thanks for reading and commenting. I do often think that this must be how it feels to grow old. Arohanui.

  8. Somehow missed this post at the time… gosh … it’s hard to know how to respond to start with.

    I can imagine. But only a fraction of what you go through. My “flu” is light in comparison as the worst bouts have in the past eased off to where things are more manageable in between times. And believe me, I am thankful for that e v e r y single day.

    What you describe is honest. Raw. No exaggeration at all. Just real. And that makes what you do each day even more amazing – your parenting despite limitations, always thinking how you can make the situation better for your husband and kids, searching for medical answers, working to keep yourself from giving in to despair.

    And it is so heartwarming to read other responses of “nodding heads” in understanding, when so often in life you come up against people who just don’t understand, can’t relate.

    “so even though you still feel like you felt for that first week in bed, you get up and carry on” [in any way you can]. Because you have to, what other choice is there, really? This awful flu-like existence – or in my case chronic pain/degenerative discs – doesn’t go away, rather it becomes your new normal. It hangs around. And sadly, because people see you carrying on, they think you are better, with no concept of what you struggle through each day. My osteo once said to me when I was having a bad back flare-up “If a healthy person was handed – overnight – the pain you function through on a bad day, they would be completely incapacitated by it.” That’s not to garner sympathy, just a ‘living’ example of carrying on. And you, my dear, are the biggest inspiration in carrying on! Hugs
    (Sorry this is so long!)

    1. Yes, I like what you say about the new normal and the way people respond to seeing you ‘carrying on’. You really get it Silke. I so wish that wasn’t because you are in so much pain every day. So many people suffering 🙁
      I salute your stoicism Silke, I know it isn’t easy to keep on keeping on.
      And I LOVE long comments! They feel like a real conversation!

      1. People who “get” you are precious, that’s for sure, in my life.

        Glad you didn’t mind the long comment … your writing and thoughts get so much moving inside my head! And about having a conversation – was thinking that as I replied to you. 🙂

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