Tag Archives: denial

Hellooo, what about me?

My parents and I were chatting yesterday.  Mum had seen an item on the TV about Sepsis and talked about the fact that her Sister died of that while having treatment for cancer.  I said to Mum “you realize that in Meningitis it’s the sepsis that kills you not so much the Meningitis?” and Mum said she hadn’t realized that.  So she turns to my Dad and says “your sister had Meningitis, it’s lucky she didn’t get Sepsis” and I sat there with my gob open.  Er, your daughter had Meningitis, nearly died and is sitting right here FFS!

My Mum is a very compassionate person and has a lot of empathy for other people’s suffering – just not mine.  Her other sister battled cancer for 2 years and my Mum frequently tells me “I’ve never seen anyone as ill as she was, she suffered terribly” and I sit there internally shaking my head.  My Aunt was 78 years old, had had a full life, had a loving husband, 3 wonderful, supportive, caring children, a GP who used to visit her weekly at home, the Council paid for her bathroom to be turned into a wet room even though she was fucking loaded, she had a specialist cancer nurse and Consultant, went to a weekly cancer support group and in the end was visited by MacMillan 24/7.  I’m not denying having cancer is rough but she had exemplary care and support.  After my Meningitis I was bedridden for a decade.  I suffered every second of every day of every year.  I was only 26, lived alone, doctors refused to visit me at home even though I was too sick to get to the surgery, I had very little symptom relief, never saw a consultant, was denied welfare benefits to pay for my own care, was denied care from social services and ignored by every-fucking-one.  I had daily seizures, frightening anaphylaxis for which I received no treatment, paralysis, spent periods unable to talk, walk, eat or even remain conscious and was told twice I might die.  But my Mum never mentions it.  Never.

It’s not like she denies that I’m sick and if something about M.E. appears on the telly or in the newspaper she will ring and tell me, it’s more that she just ignores my suffering.  I’ve been diagnosed with EDS for 8 years now and she still refuses to remember the name of the disease like it’s just too hard to remember three simple letters – she calls it “that thing that you have” if she mentions it at all.  The MCAD is ignored completely even though it too nearly killed me.

My whole family simply ignore the fact that I’m chronically ill.  They don’t ever ask how I am or how I’m managing.  When I meet friends in the street they always ask how my parents are, hell they even ask how my dog is, and never ask how I am.  It baffles me.

I know I’m not alone in that.  My best mate’s M.E. is ignored by her family too and they can get narky with her if she doesn’t attend family events, even when they’re a 2 hour drive away, like she’s being deliberately anti-social.   When they come up north to visit her, instead of staying in a hotel or B&B or taking her out for a meal they expect to stay at her home and for her to look after them – no accommodation is made for her illness whatsoever.

My Mum made a remark the other day which I also found weird.  She said “when you and your best mate meet up is illness all you talk about?” and I didn’t know how to respond.  It probably makes up half the conversation but isn’t that normal?  Our diseases dominate our lives and dictate how we live every second of the day, and when our families ignore that it’s bloody brilliant to have each other to talk to about it!  My Mum should be pleased I have that support cos I damned well don’t get it off her.

I have no clue what all this denial is about.  I’m sure it’s really tough watching your child suffer but I’m not sure how ignoring it is supposed to help the child.  Thank God for my ill friends as they are the only people who understand what life with chronic disease is like and the daily torment of being this relentlessly sick.

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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.

 

Why?

My post last week about the fact that the majority of my family and friends ignored me when I was severely ill with M.E. made me think about why.  If I post on Facebook about falling down the stairs, dislocating a rib or cutting my finger open I get lots of “ow!” comments and lots of “hope it’s better soon” comments, but never a single word is spoken about the fact that I have been chronically ill for the past 21 years.  I find exactly the same attitude in the medical profession – I’ve had more care, understanding and compassion regarding my Ehlers-Danlos in the five years since diagnosis than I have in the previous two decades of living with ME, even though the ME nearly killed me and the EDS is currently just a frustrating inconvenience.

What is it about chronic illness that fosters such a lack of care and empathy?  When I think about this question I genuinely can’t come up with a good answer.

  • I think chronic illness scares people.  If it can happen to you then it could happen to them.  If they pretend it’s not happening then it won’t happen to them.
  • My cousin once apologised for ignoring me when I was bedridden.  Her excuse was that “I didn’t know what to say to you”.  We all know that acute illness or injury is a short lived thing which you’ll get over.  It’s easy to send “get well” cards if you’re actually going to get well……..it’s harder when you’re not.
  • Healthy people are busy.  This seems like a lame excuse, only now I’m partially improved my life is HECTIC.  It’s not so busy I would ever ignore my sick friends, but that’s because I’ve been where they are and have huge empathy and compassion for their situation.  I wouldn’t have had this if I’d never been sick and simply would have no understanding of how hard and lonely living with chronic illness is.  Sheer ignorance of life with chronic illness is behind much of healthy people’s behaviour.
  • People assume you don’t need them.  They presume that someone else is looking after you and if they’re honest they’re often glad someone else is looking after you because it means they don’t have to.  The trouble is, when all your friends and family assume that someone else is looking after you it can mean that no-one is looking after you.  And even when you do have caring people looking after you, you still need other company sometimes – much as I love my parents when you see someone every day you kinda run out of conversation.
  • Impotence.  The lack of ability to fix your situation is behind a lot of behaviour in the medical profession.  Health care staff are trained to treat people and when they can’t do that they’re stuck for ideas.  Brutal as it sounds, health care staff also work to budgets and would rather spend their time and money on people they can cure than people they can’t realistically do anything for.  Which is why I don’t see Doctors any more unless I know there is something concrete they can do to help me – I’m not wasting my time and energy and their time and resources.
  • And of course there are those people in our lives who simply lack any form of empathy and understanding.  Or who think we’re malingering.  Or who are just in denial that we’re sick at all.

None of this is an excuse for ignoring, or treating badly, people who are chronically ill.  But it is what it is.  Being angry and bitter about it only hurts you – it has no effect on the people you’re angry and bitter towards.  There are some members of my immediate family that I will never forgive for the way they have treated me since I’ve been sick but I don’t sit and stress over it.  I have nothing to do with them and that’s the end of that.  Other people I’m polite to but when they find themselves in any kind of difficulty I’m not going to be the one to help them, even if they ask (which a couple have had the cheek to do!).  On the other hand, the few people in my life who have shown me care and compassion have my 100% devotion.  I will do anything I can for them which, thankfully now I’m better than I was, takes all sorts of forms from doing my parents’ paperwork, to sorting out my friend’s computer, to shopping for an ill neighbour to taking my best mate out for lunch on her birthday.

You can’t change people so it’s pointless trying.  I educate people on my diseases if they ask and if they don’t ask they obviously don’t want to know.  Just so long as they don’t expect me to be interested in them when they get sick, which we all eventually do.