Challenging misconceptions

I’ve heard just about every insult and misconception imaginable in respect of my illnesses over the last two decades.  From my biological dad’s “there are people in the world worse off than you, pull yourself together” comment when I’d been told I was critically ill with M.E. and might not make it through the night, to the common “M.E…..hmmm, isn’t that where you feel tired a lot?” (if only!) to the “have you not tried some painkillers?” in respect of my EDS (bugger, why didn’t I think of that?!).  Trust me when I say these remarks still rankle even if you ignore the fact that people you barely know feel they have a right to question you about your private life, make judgements about your situation or give medical advice when they have zero qualifications and know nothing about the diseases from which you suffer.

I do now take every opportunity, however, to set the record straight.  I’ve given up my right to privacy to discuss with total strangers how my body fails me and the repercussions this has on my daily life.  I admit to using shock tactics “yeah, I went to bed last night and woke up with a dislocated jaw” alongside graphic details of my bowel habits or how often I vomit, which usually shuts them up but at least they slink off having learned something, even if that something is to mind their own sodding business 😉

I was at my Camera Club last week.  My back was screaming and as I apologised to the lady sitting next to me for squirming in my seat she said “is there nothing they can do?” which was my cue to explain that EDS is a genetic disease and there is no cure.  “What about pain relief?” was her next question, which then gave me the opportunity to discuss mast cell disease and my allergies to all things chemical.  The poor women probably wished she’d never asked, but having done so at least she came away from the conversation with a smidgen of information about my illnesses and empathy for my situation.

On a completely different topic, my lovely dog walker this morning was telling me about a friend of her daughter’s who hasn’t been round for a while because she’s “not well”.  I asked what was wrong and my friend said “she’s fatigued, has joint pain, is sleeping a lot and generally feels unwell which, let’s face it, is called being a teenager!   All the blood tests she’s had done have come back negative so there can’t be much wrong with her” which was my cue to tell her that M.E. is the biggest cause of long-term absence in school children and the problem with diagnosis is that there isn’t a simple test which can confirm it.  My friend had no idea children were affected by M.E. and you could tell felt very sheepish that maybe there actually was something wrong with this teenager and she wasn’t just being dramatic.

People are naturally curious about difference.  If they see someone using crutches they’ll often ask “what happened?” expecting you to say you’ve broken your leg so they can sympathise, then are mortified to learn you have a lifelong disease.  If it’s a genuine question I’ll try to put them at their ease while at the same time explaining in a couple of sentences that I was born with a genetic disease called Ehlers-Danlos Syndrome which affects my collagen, which means I can have lots of joint injuries.  They’re then usually embarrassed as all hell for asking but they’ve still learned something and that’s my goal.

Of course, not everyone is asking out of kindly curiosity.  Some people are dismissive, rude and downright nasty.  A young lad shouted out “lazy bitch!” through a car window at me a couple of years ago as he drove past me on my mobility scooter walking my dog.  I’ve often been told to “get more sleep”, “exercise more”, “find the love of a good man” or “have a tipple” (if only!) and my stock retort has become “sadly I don’t think a glass of wine or an extra twenty winks is going to cure my crippling genetic disease” at which point they usually have the decency to blush.  And if they’re being really rude my retort is “I was born this way.  Were you born a rude, ignorant twat lacking in social skills or have you had to work at it?” 😀

On the whole, though, most people don’t realize they’re being insensitive when asking questions about my health and/or lifestyle.  When I was at my Camera club committee meeting recently we were discussing who should answer queries made via the Website.  As webmaster I assumed it would be me, but the Treasurer said in a pitying voice “but what about when you’re ill?” which really put my back up.  For a start I’m ill every fucking day of my life and for seconds if I couldn’t do the job I wouldn’t have volunteered for it.  I’m sure she thought she was being considerate but honestly it just felt patronising and like I was being singled out as inadequate.  If I need help I’m a grown woman perfectly capable of asking for it but until I do it feels rude for someone to make assumptions about my abilities.

I’ve made a conscious decision to stop being embarrassed about being sick and to stand up for myself.  I wrote a Facebook post about endometriosis recently, admitting that it hurts to pee and poop in front of 100 people many of whom are male and acquaintances rather than proper friends.  But, y’know, more than half the population bleed from their vaginas every month and I’m sick to death of acting like it doesn’t happen or like it’s some kind of shameful secret.  It’s as normal as eating and breathing and it’s about time women owned it.

I’ve done nothing to cause the situation with my health yet often in the past I’ve been made to feel by society that I’m somehow culpable.  Bad.  Weak.  Less than.  That I should be ashamed of not being healthy and am a burden, a drain on the nation’s resources.  I’m none of those things.  In fact I know non-sick people who receive more health care than me (pregnant women/new mothers for example) and I’d love to see how some of those who look down on me would fare living alone for over two decades floored by illness, lacking in resources, help and care, battling the medical profession at every turn, taking on a rescue dog and then looking after two sick, elderly parents.  I’d wager I’m more resilient, resourceful, hard working, determined and stronger than most of the healthy people I know.   And let’s not forget that despite my struggles, limitations and shitty health I’m one of the most talented photographers to attend my Camera Club in its 30 year history – stick that in your pipe and smoke it 😀

There is a strong perception that the chronically ill are weak, vulnerable, needy souls who have nothing much to offer.  The truth is my chronically ill friends are the strongest, most selfless, determined, creative, talented people I’ve ever had the priviledge to know.  Be proud.

 

 

 

 

 

 

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8 thoughts on “Challenging misconceptions

  1. lyuba

    This is exactly how I feel ALL of the time!
    I am not sure if I could add anything else apart from the fact that I have an irresistible urge to slap an idiot who comes up with : you should go on holiday, it would help! An idiot in this case was a rheumatologist from Kendal hospital. Another (also a rheumatologist from Kendal) told me I should learn to live with this without offering any diagnosis or even understanding what she was talking about!
    My 12y.o. son’s biopsy from 2 years ago was revised at my request recently. I have been talking about mast cell conditions for years now, but nobody had any clue what I was on about. His results came back that the number of mast cells was elevated at 33 per hpf! Despite this finding an allergist told me that even though she is not an expert, because my son’s tryptase was normal he doesn’t have mast cell condition and discharged him without any further tests! I have to add that I have tested his n-methyl histamine previously which was twice the norm for his age.
    So, yes, ignorant idiots are everywhere, but when they get paid hundreds of thousands a year for their ignorance, it really is infuriating!

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      1. lyuba

        I am trying not to give up and if it wasn’t for my children and their compromised futures as a result of this condition, I might have found not giving up too hard.
        When I read what you said about vomiting and stuff, it made me want to share my new ”cure” for some of the symptoms that might help you if you haven’t tried it yet or others who read your blog. About a month ago I started taking digestive enzymes. I have half heartedly tried it before, but this time I’ve decided to really explore this option. I am taking probably 15 plus tablets of Full spectrum formula from H&B per day. I take one even with a cup of tea. I have started feeling much better on day 3 or 4 and so far in the last 2 weeks I didn’t need to lie down at all during the day. I am not sure why there appears to be a problem with enzymes. I will try and find out, but the main thing is that I am able to eat whatever I want for the first time in about 5 years where previously I felt like every meal was poisoning me. I will add that I am also on all sorts of mast cell stabilisers, many vitamins and minerals, turmeric, ranitidine and aspirin – all in all about 35ish per day, but the enzymes made a huge difference!
        Having said that, I have tried giving enzymes to my daughter who is suffering from extreme fatigue and many symptoms of mast cell disorders, but it made no difference in her case.
        All the best to all! Keep fighting!

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  2. That Other Jean

    Thanks, Jak; I needed that. I woke up with pretty much everything hurting this morning, took all the painkillers I can, and was feeling useless and sore since nothing seemed to be working. And yet I supply a hand-quilted baby quilt to my guild to give to parents in need every month or so, crochet blankets for The Linus Project, volunteer once a week at a cat-and-dog rescue, and care for two dogs and three cats. I appreciate my husband’s help when things are difficult, but it’s not quite so hopeless as it seems sometimes. Thanks for the reminder. Like you, I shall carry on as best I can. Fortunately, I’m old enough that not too many people ask what’s wrong–they just assume I’m having trouble because I’m old.

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    1. Jak Post author

      You do really well to take all that on Jean with poor health. There are lots of healthy people who do no volunteering at all! Jak x

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  3. mywholebrokensoul

    I was recently diagnosed with Hypermobile Ehlers-Danlos Syndrome, and I identify/relate to everything you said in this post. I’ve been symptomatic for over 12 years (I am 22), and while I was growing up as an athlete, I was always accused of being super over-dramatic about my pain, injuries, fatigue, insomnia, brain fog, etc. – A doctor FINALLY took me seriously after a diagnosis of cancer (I’m cured, now, thankfully!) a few years ago. As unfortunate as it was to need a cancer diagnosis for someone to take a person seriously, I’m thankful for that – otherwise, I’d probably still be searching for answers!!

    Even though this crippling genetic disease has no cure, it feels good (for me) to know what the hell is going on after a decade of searching blindly, you know??

    I enjoyed your post!!

    – Hannah

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    1. Jak Post author

      I, too, was delighted to get my diagnosis after years of symptoms so I can totally relate to your reaction Hannah. People think athletes are fit so can’t possible have anything wrong with them! It hit me like a brick when I realized that my whole life I’ve struggled with fatigue that other people didn’t – I always just felt like a wuss, not realizing my body was working ten times harder than all my peers. So pleased your cancer is in remission and I hope you can find a good management stragety for your EDS. Jak x

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  4. Ellie

    You forgot “its all in your mind dear”, “I think you should take anti-depressants”, “well you never used to be like this!” and “oh you’re a hypochondriac!” not to mention that simpering, condescending, patronising look from medical staff who think you know nothing about your own body.
    If I could be bothered with the Dr, specialists, shrink anymore Id be sure to wear my “f*ck what they think” t.shirt!
    I don’t know if you react to plant based medicine but there are a plethora of plants with mast cell inhibiting & anti-inflammatory effects. They have got me out of hospital (& kept me out) when the medical profession failed.
    As to all the rude A.holes remember – Karma is a b*tch!
    Hugs – keep smiling, your strength is an inspiration 🙂

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