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:
- Good balanced diet, with plenty of antioxidents
- Avoiding stress
- Drugs to help with sleep and pain
- 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.