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.

 

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9 thoughts on “Disease Denial

  1. carmensnip

    I simply need to express how grateful I am to you for such brilliant posts, like this one. Thanks again, Jak.
    That list of 6 things to do for recovery… is an eye-opener for me, especially the “Gradually increasing activities over a number of years”.

    I tend to use up all my energy on good days because it looks like I am getting better. I believe that my energy came from something I did or didn’t do.
    But the next day…. I’m a complete mess again, even with the same things that seemed to help me before.
    I get it now…

    There is progress though. The HIT is no way near as bad as it was before I used Daosin.
    Some things do work.
    .

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    1. Jak Post author

      I definitely think my HIT is an easier disease to help than the others I have and has responded well to intervention. Thank God for small mercies 😉 Really glad you’ve found relief with Daosin.

      M.E. has been the hardest to do anything about and although pacing really helped me I wish there were an easier way of managing the disease!

      Jak x

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    1. Jak Post author

      From my experience, children can make a full recovery even if they’ve been very poorly. But I don’t know of an adult that’s made a complete recovery. Having said all that, I’ve known some make a huge degree of improvement, though they still have to pace to a degree and be careful if they catch a cold or other bug. Jak x

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  2. Karen, The Walking Allergy

    When u have something like cancer, you have to fight it- get out what no longer belongs. If we try and fight MCAS, we lose, because we end up fighting ourselves. For me, that was a huge revolution. If I’m going to have to deal with a grumpy toddler (mast cells are a LOT like 2 year olds..), we can have a power struggle and end up not making it out the door. The harder you fight, the harder they push back. Oh…I think I have a funny list started… It doesn’t matter what you do; if a two year old is overtired and hungry- everything stops dead until that is resolved.

    Some in my extended family have had a very hard time understanding that ‘I’m not fighting it anymore.’ is a step forward, not backwards. It does NOT mean I’m giving up, it means I’m making the best of the situation. . I’m planning on at least another 25 years on this planet (okay, that might be a bit unrealistic…). I could fight tooth and nail every day, or I can do what I can, and be okay if my toddler decides that she must wear her underpants on her head. It’s not ideal when you’re going out to a restaurant, but it’s preferable to a full blown tantrum at the table.

    TTFN
    PS. Can you tell that I havent left the house in ten days? I barely leave my room! I’ve caught up on your blog, written a few posts for mine… I’m officially bored now. The smoke is bad. Very, very bad. Yesterday it only took 5 minutes without my mask, out of my room, just in the house, not outside, to start reacting. It’s almost immediate now. We had to set up an ‘air lock’ because I was reacting anytime someone opened my door. I’m still dealing with the my GI issues (partial blockage of some sort. I think a loop of bowel is looping on itself, but apparently I’m not in enough pain for that, nor can people feel specific places on their bowels….has it not occurred to them that I don’t have pain because I CAN feel that- if you are able to interpret the subtle signals, my body doesn’t need to scream to get my attention…🙄). One of these days, I’m going to respond to that by intentionally dislocating my finger (it’s way past repair- I dislocate it about once a week). “This should hurt. But it doesn’t. Pain is not a reliable indicator for me.” This next ‘phase’ in my healthcare is going to be fun… a lot of ‘I told you so’… 😁

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    1. Jak Post author

      LOL, love the toddler analogy 😀 I have a dog which is like having a permanent 2 year old, and MCAS which is like having a permanent 2 year old – and I’ve never wanted kids! 😉

      I feel for you so much on being stuck in the house. If I’m in bed more than a week I’m climbing the walls – I have *no clue* how I did that for 10 whole years without losing my shit! It must be scary to react to strongly to your environment 😦

      I totally get your point about pain. I’ve lived with pain of one kind or another for 40 years and it has to be 11/10 before I give in to it. I’m sure people think my pain can’t be bad because I’m up and about and doing my normal stuff as usual, when it’s just that I’m so used to it my brain can kind’ve ignore it for the most part. I’d love to see the look on the Doctors face when you pop your finger out and don’t even flinch!

      Hope the smoke lifts soon and you can get out.
      Jak x

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  3. d

    It’s definitely hard when you come to that realization that your life is not going to be what you thought it would be. Letting that go and finding out how to make the life you have meaningful is a challenge. Some can do it and some struggle. It wasn’t until I read a book by someone with chronic illness that I decided I needed to change – I had to stop pushing and rest. That was the first step. Once I started doing that, I found it easier to make the other adaptations I needed at the time to feel better. It’s a slow process. I am much more accepting now than I was three years ago, and I still have room to grow in that area.

    Where I live, it seems if you’re sick you should push through. The limitations on sick days and how many sick days you can take make people feel guilty if they stay home. We are taught that we should just tough it out and get back at it. It’s a complete disconnect between the body and the mind.

    Like you I hope those who are in denial do find their way to a place where they can feel well and happy.

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    1. Jak Post author

      It’s the same where I live, surrounded by tough farmers who never take a sick day in their lives. Even Doctors have been taught that the sooner you can get a sick person up, about and exercising the better it is for them and when it comes to ME they just can’t accept that’s the worst advice you can give. It even took my specialist EDS physio a whole year to realize that when I injure a joint I need to rest for *months* not a couple of weeks due to my reduced healing time – thankfully she got there in the end and now says “it kills me to give this advice but you need to totally rest for the next 6 weeks” LOL! Jak x

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