Tag Archives: anger


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.


Moving On

By the time we reach our 50th year we all have emotional baggage.  I have so much it would fill several airport trollies and need a small army of porters to tow it behind me, which would be both expensive and exhausting.  So at various times in my life I’ve made a choice to leave my suitcases behind.  I now travel along my life’s path with a large hold-all filled only with my most vital and treasured possessions.  It turns out all that baggage I thought I needed, and which made me me, was unnecessary.

As regular readers know, I did not have the best childhood in the world.  My parents lacked education, emotional intelligence and made some very poor decisions.  In my twenties I was really angry about that and the way their choices and behaviour had affected me.  But here’s what I learned: they did not know any better.  They had been taught poor coping mechanisms and interpersonal skills by their parents and were simply living what they’d learned.  By the time I was 30 I had to make a choice to forgive them or move away from them.  I chose forgiveness of my Mum and Step-Dad because I love them and they love me, and chose to let go of my biological Dad.

I have no idea why some people hold on to the pain of poor parental relationships.  Why anyone would spend their whole lives blaming their parents for how their own lives have turned out.  Yes our childhoods are determined by our parents, but our adult lives are not.  We can choose to let go, forgive (or not) and to move on.  We can talk through our issues with a trained therapist.  We can learn better ways of showing anger and hurt.  We can read books on how to improve our communication and interpersonal skills.  We can learn to do things differently to the generations who have come before us.  By the time we’re 50 we surely have to take responsibility for our own lives and not keep blaming someone else for how we’ve turned out.

“Do the best you can until you know better. Then when you know better, do better.” – Maya Angelou

I fell out with two of my closest friends in recent years and both were holding on to past pain, which I found frustrating.  One had had an eating disorder since her early teens.  She was adopted and had let this dominate her entire adult life.  She never sought help and when her body started packing up from years of malnutrition to be honest I found it hard to have much sympathy.  Her food issues set a bad example for her three children and I couldn’t understand why she hadn’t even tried to sort her shit out.  She herself adopted a child and it’s plain for everyone to see that she never really bonded with him.  She’s a good parent in that he’s looked after very well, but she keeps her emotional distance and is repeating the distant relationship she had with her adoptive Mum.  The other friend also had a strained relationship with her Mum, poor body image, couldn’t come to terms with her chronic illness and the effect this had had on her life, and basically wallowed in the whole thing.  Her constant ‘poor me’ attitude was really grating especially as, compared to me, she’d had a pretty good life!  Why would you not seek counselling and at least make a stab at sorting your issues out?  Why do some people get to their 40s and keep walking on the same old treadmill of pain and misery, focusing on everything they’ve lost and not on all the things they still have?  I can’t image waking up every day and hating myself or my body – how on earth would I face the days?

It seems to me that people who are still wallowing in past pain by the time they’re middle aged are getting something out of it.  You wouldn’t do it otherwise.  We are animals and we don’t embark on behaviour that isn’t rewarding, even if the reward is negative.  I pointed this out in an email I sent to the second friend mentioned above which she made public on Facebook and I was branded an evil witch and sent to Coventry by half my so-called ‘friends’, but I stand by every single word.  We all have baggage.  We all have relationships which have damaged us in some way.  I’ve had my entire adult life taken away through chronic illness as have many of you, yet I am happy.  I have my emotional shit together.  I do not blame my Dad for being crap, or my Mum for her lack of coping skills.  I realized I’d made a mistake in chosing my abusive Husband so I left the creep – I didn’t stay in the marriage torturing myself like my parents have done for the better part of 40 years.  I do not blame my body for letting me down – bless it, it’s doing the best it can to keep me alive despite everything.  I do not have the life I’d planned, but I do have a life and I have no intention of living it in misery.

Happiness is a choice.  No matter what’s gone on before we can wake each day and choose to not let our past define our future.  We can forgive ourselves, and others, for our mistakes and for not being perfect.  I am not one of these happy clappy people who embraces my disability – who the fuck would embrace a broken body?!  But I accept my broken-ness and try to live the best life I can despite it.  If I focused on everything my illnesses have taken from me (career, partner, kids, money, holidays, hobbies) I’d probably top myself, so I don’t focus on it!  It’s not rocket science.


A Long Walk To Freedom

Last night the film ‘A Long Walk To Freedom’, based on the autobiography of Nelson Mandela, was shown on TV.  I’d already seen it but watched it again as, due to my terrible memory, I couldn’t remember seeing it when it was first released.  When Nelson was a younger man he wasn’t exactly angelic and his first wife left him after one affair and one beating too many.  Then, after one massacre by the whites too many, Nelson decided armed conflict was the only route open to his people – he then trained in weapons and explosives and the ANC started fighting back.  As he says himself, 50 years of peaceful protest had gotten black South Africans nowhere – what else could he do?

After 27 years of captivity, release saw Nelson a different man who went on TV stating that “peace is the only way forward”, despite his wife and some of the other men with whom he was imprisoned disagreeing and wanting revenge on the unfair, unjust, tortuous and murderous white ruling class.  In fact, it was largely the disagreement on peace v revenge which ended Nelson and Winnie’s marriage, not Nelson’s years of imprisonment.  I wonder if, had Nelson not been incarcerated, whether the ending of his, and ultimately South Africa’s, story would have been wildly different?  If he’d not had time to be introspective, to age and to grow in wisdom.

I can’t think of a time in history where violence and hate has ever ended well.  I can however think of times when peaceful but intelligent and determined opposition has ended well: the end of Apartheid in South Africa; the liberation of India from the British; the end of black segregation in America; and negotiation finally ended The Troubles in Northern Ireland after decades of unimaginable violence.

In my own little way I feel kinship with Nelson Mandela.  I, too, have lost 22 years of my life much of that time spent in solitary confinement in a tiny room, cut off from the outside world as I was too ill to watch the TV, listen to the radio, or converse with my fellow man.  My body has been tortured, my mind tested to the limits of endurance and my spirit broken.  My Councillor asked me the other week how on earth I endured 10 years of being bedridden and in almost total isolation without losing my mind and my answer was “I have no idea”.  Like Nelson, I spent the first 6 years fighting my disease only to finally reach acceptance that battle was futile and I had to learn not only to co-exist with my illness but to live joyfully despite it, just as Nelson initially battled with his captors only to eventually befriend them.

And in its own way, the M.E. community has been waging a war with the health establishment, just as the ANC fought a war with the ruling establishment.  For the two decades I’ve been sick I’ve lost count of the times my symptoms have been attributed to psychological factors and I’ve been diagnosed with everything from anorexia nervosa to plain old stress when I was clearly so ill I was at death’s door.  The rage I still feel at the unfairness of this and the lack of treatment for my physical distress, at times, overwhelms me and I admit there have been days I’ve lain in my bed and wished physical harm on some of the doctors and health professionals I’ve seen.  However, hate is not the way forward.  The rage of hate clouds your judgement and your actions and ultimately only hurts you:

“hate is like drinking poison and expecting the other person to die”.

I’ve never agreed with the way some members of the M.E. community have treated those doctors who oppose the view that M.E. is purely physical – the death threats and the vitriol on social media sickens me (and I’m sick enough already).  It’s clear from reading Facebook and forum posts that there is a small section of the M.E. community who are consumed with rage and they cannot be reasoned with.  They think their anger helps our cause but it does the complete opposite and re-enforces the view we are all emotionally unstable.  The same names come up time and time again spouting the same old arguments and even I think “oh do shut the fuck up!”

Thankfully we have some Mandelas in our midst.  People like Jen Brea who got off her extremely ill backside to make a film about our disease in a calm, reasoned and rational way, an attitude which prevailed over the anger I’m sure she also feels and bitching judgement from some M.E. patients.  Charities like the ME Association who aren’t perfect but who have spent 30 years plugging away and trying to raise the profile of the disease against massive opposition from the medical establishment and some bitching whinging patients.  Researchers and clinicians who, despite ridicule, lack of funding and court orders, have stuck their necks out and tried to find a physical explanation for our symptoms.  And patients themselves who volunteer their time and experience in a myriad of ways to help their fellow sufferers, despite being verbally attacked by some of them.

Like Ghandi, Martin Luther King and Mandela’s faith that they would win freedom for their people, my faith that a cause for M.E. will be found has never wavered.  Neither has my anger at the appalling lack of even basic care and compassion I, and my fellow severe sufferers, have endured over the decades.  However, anger does not consume me.  I see the tide slowly turning and I am hopeful for the future.  The truth will out and we will see vindication.