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.