Tag Archives: acceptance

Disease Denial

I’d guess that 100% of us are in some form of denial when we’re first diagnosed with a chronic illness.  Obviously we know we’re sick and for me personally all three of my diagnoses were a huge relief because finally I could put a name to my symptoms and stick my tongue out at all the doctors who’d told me there was nothing physically wrong, but there was still a massive amount of rejection of the fact that I would never get better and my life had changed forever.

When we’re first diagnosed we go online and read about all the success stories.  People who’ve had dry needling and physio and have gone from needing a body cast and a wheelchair to running the London Marathon and we think ‘yep, that’ll be me’.  Only it usually isn’t, especially for those of us who are diagnosed with hEDS in our middle or later years and who have already had decades of untreated trauma to our joints and ligaments.

In the case of M.E. the denial can be particularly strong.  The internet is full of people who have been ‘cured’ and we don’t twig that they never had M.E. in the first place because it’s a disease with no test and widespread symptoms which can be mistaken for scores of other illnesses.  Even my Doctors told me I’d soon be better because “most people make a full recovery within two years” which is probably the biggest fib I’ve ever been told.

I went online in the early years of M.E. and read about people recovering after ice baths, gluten-free diets, hyperbaric oxygen, bee propollis, lymphatic drainage, Ampligen and 2000 other treatments and thought “right, I’ll try every single one cos I’m 26 years old and I need my goddamn life back”.  So my parents spent in excess of £20,000 on everything from reflexology to experimental electrical stimulation and it made not one iota of difference.

People with M.E. can, and occasionally do, improve but from my years of experience of the disease I’ve never come across anyone yet who’s made a sustained improvement because of some weird or wacky pill or therapy.  Nope, it’s been the same thing in 99% of cases and a recent story on the ME Association’s facebook page proves the point.  For most people, any kind of recovery includes the following:

  • Rest
  • Good balanced diet, with plenty of antioxidents
  • Avoiding stress
  • Drugs to help with sleep and pain
  • Pacing
  • Gradually increasing activities over a number of years (sadly not days or months).

It’s that simple, yet so incredibly difficult hardly anyone achieves it and sometimes despite doing all the right things no improvement is seen.  I especially wonder if it’s even remotely possible to achieve improvement if you have kids because there’s no way on earth of having a stable routine every day, or getting the rest and sleep you need, when you have a family.  And it’s absolutely not do-able if you continue to work.  That’s hard to hear isn’t it?  And even harder to accept.

I know people with M.E. who have been ill for two decades yet are still in denial.  They’re stuck in the grief and pity stage and haven’t moved on to the acceptance stage.  They’re constantly online expressing amazement that their symptoms wax and wane or are worse after activity yet still won’t change their lifestyles to allow their symptoms to stabilize.  Asking their friends to pray for them or send them positive vibes, frantically still trying to find peace.  It makes me so sad.

I can tell my friends who’ve reached acceptance because they rarely mention their disease(s).  They talk about their pets, or books, or telly programmes, or how shit their Carers are, or the wildlife they see from their windows and there is nothing about their pain, physical or emotional.

I was listening to an Australian radio interview given by Jen Brea and her husband last week and she made a very potent point.  That it’s a fine line to tread between acceptance of your situation, living in the moment and finding joy and peace, yet never giving up hope that science will catch up and find a cure or effective treatments.  I think people who are in denial might feel that if they accept their situation it means giving in and giving up, when of course it means nothing of the kind.  I am completely at peace with my situation yet there is always, always hope that there will be a breakthrough, particularly in the case of M.E. and MCAD, and a treatment will emerge which will give me back at least a portion of my healthy life.  But in the meantime I have to live with my diseases and stop wasting my precious energy searching for the impossible.

When I come across people in denial, especially if they’ve been ill for several years, the blunt side of me wants to say “FFS.  Which part of the words chronic or incurable is it that you’re not understanding?!” which I know sounds harsh, but if there were an effective treatment out there none of us would be suffering.

Ironically, it’s only when I gave up hope of ever recovering and accepted that I was sick and I’d be sick forever that I actually started to improve.  For the first 6 years I’d used every ounce of emotional, mental and physical energy I had trying to research and try treatments.  But my poor brain wasn’t well enough to be on every forum known to mankind or to be spending hours each day reading other people’s stories.  My emotions weren’t well enough to cope with the continual excitement and hope of trying a new therapy and the inevitable grief and depression when it didn’t work, or more usually made me even sicker.  My body wasn’t well enough to cope with weekly trips to the therapist and the hours and days afterwards spent trying to recoup my energy.  In trying to get better I was actually making the whole situation worse.

However, it’s absolutely pointless telling people who are in denial that they are in denial because they’re not ready to let go of their old life and who can blame them?  All you can wish is that they finally find peace and acceptance, which might not make them physically better but will definitely make them happier.

 

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.

happiness

Cure me!

I’ve written variations on this post over the past couple of years, but it’s always worth repeating for new visitors to my blog.

None of us want to be sick.  I’ve lost virtually my entire adult life to illness and it’s not a path I would ever have chosen.  I was bedridden from 26-36 at a time when my healthy friends were marrying, having children and developing careers.  I’m now 48 and I still spend 17 hours of every day in bed.  I still have no career, no partner of any description let alone a husband, live in increasing poverty and the simple tasks of every day living are a constant struggle.  It’s not much fun.

But in many ways I’m one of the lucky ones.  I developed ME in 1996 and it only took me 6 years to realize that:

  • There is no cure for ME and
  • I would be sick, to varying degrees, forever.

So when I was diagnosed with both EDS and MCAD, neither of which are curable or particularly well treatable either, it wasn’t that much of a big deal.

I have friends who, 20 years on, still can’t come to terms with the fact they are chronically ill with a disease (or diseases) for which there is no cure or really effective treatment.  I can’t image how stressful that must be.  To search for decades for something which doesn’t exist.  To not be able to find peace with your situation.  To constantly be longing for a non-existent future and, by the very nature of that, not living in the present.

That’s not to say you should give up trying things which might help.  One of my friends was bedridden with ME for 15 years before discovering that low dose Naltrexone helped her enormously and she now lives on her own with the help of Carers.  But I look at posts on the ME Association’s Facebook page from newly diagnosed people asking if L-glutamine will stop their pain, or if Lymphatic drainage will cure them and I want to scream “OF COURSE IT WON’T YOU NUMPTY.  IF IT DID NONE OF THE REST OF US WOULD BE SICK!”.  I don’t though, cos they need to come to terms with the fact there is no cure or effective treatment in their own time and in their own way.  It’s really tempting though!

In America in particular, where money buys you anything, my sick friends are often taking 2 dozen pills and potions a day and trying really weird and wacky treatments like hyperbaric oxygen and I just watch the crazyness with an aching heart.  I have friends who tried all that shit 20 years ago and, spoiler alert, they’re still sick and financially destitute to boot.  That would be because ME isn’t a curable disease, particularly if it’s complicated by other diseases as it so often seems to be.

I’m now going to get comments from people who know people who were really ill and are now ‘cured’.  This is why an accurate diagnosis is crucial.  There is no diagnostic test for ME and because of that people get diagnosed with it when they actually have a variety of other diseases.  They then try a gluten-free diet and, voila!, they’re all better.  The fact they obviously didn’t have ME in the first place never crosses their mind – they have the cure for ME and are determined to preach it to the world.  They annoy the shit out of me.  And don’t get me started on people who are cured by eating medjool dates or wheelbarrow loads of kale because they annoy me even more.  Complex neuro-immune diseases are not cured by eating an anti-inflammatory diet any more than they would be cured by 3 pints of a lager and a packet of crisps.  The very idea that diet cures disease is so bonkers I have no clue why the myth still perpetuates.  Actually I do know.  It’s born through desperation and I can understand that, if not embrace it.

I know some people with EDS who have been helped tremendously by physiotherapy or prolotherapy and I’m delighted for them.  I’ll be interested to see how that pans out when they’re 50 and menopausal though – I didn’t sublux a joint til I was 45 and my hormones did a runner.

In respect to Mast Call Activation Disorder the one thing reading Dr Afrin’s book showed me is that none of his patients were ‘cured’.  He helped some and didn’t help others no matter how many drugs he threw at them.  When you don’t know what causes a disease it stands to reason you really don’t know how to treat it, let alone beat it.

Nothing I say, however, will stop some people from chasing the dream of a cure.  In their hearts they know it’s futile but it’s become their reason for being.  Every last ounce of their precious energy each and every day will be spent on 2 dozen forums excitedly chatting to other people trying the same wacky, and pointless, treatments as them ignoring the fact there are no ‘cured’ people on the forum, or anywhere else come to that.  Chasing the cure gives them a goal, a purpose for the day when they have lost their sense of identity and reason for existing in the world.  I get it.  Truly I do.

None of us wanted this life.  But it is what it is and it’s still possible to find purpose, meaning and……dare I say it……joy in amongst the chaos and uncertainty.  For me that’s found in nature, my dog, my photography, helping my Church and my community as a volunteer from my bed, looking in on my 86 yr old next door neighbour who’s just lost her husband, blogging and hopefully helping you all wherever in the world you might be.  Focusing too much on our limitations, our pain, our suffering is unhealthy and we’re already sick enough.

We have to find a new way in this world we didn’t want or choose.  Does that mean I spend my days in a happy-clappy-zen-filled haze?  Don’t be stupid.  I get fed up, depressed, angry, frustrated, tearful, resentful, suicidal and spend a large part of every day bored out of my skull.  But then I did all that in my healthy life too – I had heartache, depression, grief, friendships which disintegrated, cheating boyfriends, money worries, time pressures and trust me when I say that doing the filing hardly filled me with job satisfaction.  It wasn’t all rose-tinted and fabulous, no-one’s life is.

“With all its sham, drudgery and broken dreams, it is still a beautiful world.  Be cheerful. Strive to be happy.”
Max Ehrmann, ‘Desiderata’