Being chronically ill isn’t how it’s portrayed on the telly.  On the tv people get sick, lie on the couch looking fabulous (if a bit pale and wan) while their friends and family rally round bringing blankets and chicken soup, enabling them to make a complete recovery usually with the help of some miraculous new medical intervention.  There is no unwashed hair, food stained pyjamas, stench of Deep Heat, denial of their symptoms by the medical profession and their nearest and dearest don’t bugger off into the sunset to carry on their lives without them.

For me, and many of my severe and long-term ill friends, life can be a lonely, isolated, frustrating and boring existence.  Friends who kept in touch in the first couple of years have long since drifted away.  The tension of still being reliant on parents when you’re in your thirties or even forties, or having a spouse turn into a caregiver, tests even the most rock-solid of relationships.  Children grow up with a basically absentee parent.  Careers we fought so hard for vanish forever.  Finances are tight.  Holidays by the beach are a long forgotten memory as we live our lives imprisoned by the four walls of our home, each day stretching before us in pain-filled, monotonous solitude.

There is much grief in living with chronic illness.  The mourning of a life we thought would be ours.  The letting go of cherished hopes and dreams.  The realization that this is now our future and all hope of normality is gone.

I’d already had a tough child-hood.  I’d already survived years of bullying, an abusive husband and being ostracized by my paternal family.  I had just started to gain my emotional equilibrium and find happiness when M.E. hit.  It felt desperately unfair.

I clung on to the hope that I’d be better in a year or two, but as I reached the 5 year mark, then the 10 year mark, hope left the building.  15 years down the line I’d gained my EDS diagnosis.  20 years down the line and MCAD, Endometriosis, Adenomyosis and an Essential Tremor had been added to the mix.

I’m not sure whether time makes it easier, or harder, to fight off bitterness.  There are many days I wake with joy in my heart and gratitude for my life, but still those days I wake feeling angry and hard done by.  Having been given all these issues to deal with couldn’t the Universe have provided me with a little compensation?  A loving husband, my dream home, or a lottery win maybe?  Something, anything, to make up for all I’ve lost?

There are days I struggle to fight my anger. My experience has given me hard edges and made me emotionally difficult to reach.  Yes it’s provided me with other attributes – empathy and a kind heart I hope – but it’s taken far more than it’s given.

I try not to be hard on myself on those days bitterness engulfs me.  I tell myself it’s normal to feel that way now and again, just so long as it’s not all I feel.  There are no Manuals to tell us how to live a joyful and fulfilled life when so much has been taken away.  I remind myself there are people far worse off than me in the world.  That I do, in fact, have much to be thankful for.  Some days that helps.  And other days it doesn’t.

I don’t want this post to sound maudlin or depressing – I’m just being honest about the reality of living a restricted life.  We’re not Saints, we’re just human beings doing the best we can under exceptional circumstances.  It’s normal to feel frustrated, angry and bitter – the hard part is to not let that consume us.


8 thoughts on “Bitterness

  1. marilyn templeton

    Your gift to us is your fortitude, strength and, yes, hope. If you can get through your days with all your problems then so can the rest of us. When I’m feeling all that you describe off I go to your Blog, and I’m not alone any more. Bitterness? Bring it on! We’re allowed!


  2. Lori

    Thank you for writing this. Echos many of my struggles, sentiments and frustrations. I feel loneliness is one of the worst parts of chronic illness. No one wants to be around someone that can’t be sure if they can make it through a shopping trip without having to lie down on a bench in the middle of the mall, or suddenly need assistance to the car.

    Liked by 1 person

    1. Jak Post author

      I hear you Lori. We are still us, but living in the healthy world when you have a chronic illness is hard and it can lead to us feeling hugely lonely. Jak x


  3. livvy

    Hello Jak, this was so powerful what you wrote, I am trying to write a support guide for my carers and I’m not as good as you with my words and needing lots of help, I wonder if you are ok or not with me printing this to show them? I would cite your name and blog of course! Its totally cool btw if you wouldn’t want me to do that, it was amazing just to read it when I wake up and you make me feel less alone with all of this. I hope you know how much you are changing peoples lives, just with your words and openness. Thank you.


    1. Jak Post author

      Hi Livvy

      Of course you can use the post. I’m just so glad sharing my experiences is helpful to others and I hope it helps educate your carers on how difficult life with chronic illness can be.

      Jak x


  4. d

    I agree with the other comments. Your gift is your ability to share your struggles and successes, which allow others to feel less alone. I also come to your blog when I need to feel support and less alone. The challenge of letting go and building something from what you have left or creating something totally new is daunting at times. Some days I feel up for the challenge and others I am tired and I just want it to be the way it was. Thanks for always being honest. It has gotten me through some lonely and trying times. You’re the best!

    Liked by 1 person


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