If

My whole life people’s reactions towards me have been weird.  Men, on the whole, adore me.  Which has had its plus points but also has a darker side.  I’ve been hit on by everyone from my bosses to other people’s husbands, including my Dad’s mates when I was just a teenager several of whom tried to grope me.  I’ve had boys at school obsesses over me to such an extend they’ve threatened suicide when I wouldn’t date them.  And all because of how I look (I don’t kid myself it’s because of my scintillating personality).

Some women, on the other hand, have hated me with such a passion it’s been truly scary.  I was bullied at school mercilessly from the age of 7 til I left at 18 by various girls, one of whom tried to abduct me at knifepoint into a car and another spread a rumour round town that my step-dad and I were having sex, I’d gotten pregnant and had an abortion……at the age of 13.  Which, btw, people believed.  And all because of how I look (these bullies never spoke a single sentence to me).

I’m pretty enough but I’m hardly Angelina Jolie.  I’ve never ever understood people’s fascination with me.  I’ve never dressed differently to anyone else, never wore much makeup and always had shit hair.  Even now I’m nearly 50 I still don’t get it.  As you can imagine, all this gave me a massive complex about my appearance.  Thankfully with age comes confidence and when I got to around 30 I stopped caring what other people thought.  I can’t help my genes so I embraced them.  Other people’s actions aren’t my problem, they’re their problem.  If other people want to obsess about me it says a lot about the gaping empty holes in their lives and nothing about me, because I don’t think about these people for any second of any day – my life is too full and they are irrelevant in it.

To make matters worse I have a Mensa level intelligence, not that you would know it these days as my brain is like pea soup 😉  Coming from a working class family I kind’ve stuck out like a sore thumb.  I think my parents were both proud I was so clever and embarrassed I “knew everything”, which they think made me look arrogant.  So I hid my intelligence a fair bit as a younger person.  I think intelligent women feel they have to dumb down being clever because “society” thinks they should be softly spoken and deferential.  I say bollocks to that.  If knowing stuff other people don’t know makes me arrogant then I guess I’m arrogant.  If being more masculine in personality than softly feminine, which I am, makes me arrogant then I’m arrogant.  I am who I am, take it or leave it.

So what has all this got to do with being sick?  It’s about having the courage of your convictions.  It’s about trusting your gut instinct.  It’s about inner strength.  It’s about speaking out and not being silenced.  It’s about making a fuss and standing out, even when everyone around you tells you not to.  When they’re telling you to swim with the tide, not against it.

I knew ME wasn’t psychological, that I wasn’t depressed or “lacking in coping skills” but I had an 8 year battle to prove it.  I knew I had EDS not Fibromyalgia and knew I wasn’t just “sensitive to pain”.  I knew I had MCAD, even when every doctor I’d come across in 15 years told me it’s impossible to react to all drugs and that I was just “anxious”.   Everyone was telling me they were right and I was wrong and I should just put up and shut up.  I refused.  Thank God.

I know some of you out there are currently battling against Doctors, teachers, family members and friends who don’t believe you’re sick.  Or who think you’re just being weird not eating certain foods or refusing certain medications.  Or who believe you’re just being weak and need to buck your ideas up.   Stick with it.  Have the courage of your convictions.  Be strong.  Shout and stamp your feet.  Keep on fighting, even when you’re exhausted from the battle.

We are pioneers paving the way for all those who will follow and I, for one, am proud.

“If you can keep your head when all about you
    Are losing theirs and blaming it on you,
If you can trust yourself when all men doubt you,
    But make allowance for their doubting too;
If you can wait and not be tired by waiting,
    Or being lied about, don’t deal in lies,
Or being hated, don’t give way to hating,
    And yet don’t look too good, nor talk too wise:

 

If you can dream—and not make dreams your master;
    If you can think—and not make thoughts your aim;
If you can meet with Triumph and Disaster
    And treat those two impostors just the same;
If you can bear to hear the truth you’ve spoken
    Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to, broken,
    And stoop and build ’em up with worn-out tools:

 

If you can make one heap of all your winnings
    And risk it on one turn of pitch-and-toss,
And lose, and start again at your beginnings
    And never breathe a word about your loss;
If you can force your heart and nerve and sinew
    To serve your turn long after they are gone,
And so hold on when there is nothing in you
    Except the Will which says to them: ‘Hold on!’

 

If you can talk with crowds and keep your virtue,
    Or walk with Kings—nor lose the common touch,
If neither foes nor loving friends can hurt you,
    If all men count with you, but none too much;
If you can fill the unforgiving minute
    With sixty seconds’ worth of distance run,
Yours is the Earth and everything that’s in it,
    And—which is more—you’ll be a Man, my son!”

  Rudyard Kipling

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11 thoughts on “If

  1. Glo

    Well that’s a perfect post for me today. I’m going through some major financial problems right now and have been stressed for days. You’re right though. I have gone through harder times and made it through. If I lasted through 10 years of trying to convince doctors and others that I am ill and not just imagining things I will get along fine. Many people including my primary physician still think there’s nothing wrong with me. It’s a great thing to be strong mentally and not sink under the weight of all those who would like to see you go under and not make it back up. It sure isn’t easy but it can be done. I just think of myself as a pitbull

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  2. Catherine

    Your writing is such fresh air to sometimes ,at the moment ,a deep weariness ! I identified with it all . The joke is when we live with such ugly pain and struggle of course we don’t feel how others see us ! Friends joke with me as I never go through a day without being told ” You look so great ” ! It’s almost as if the subtext is ” I wish I looked that great so tell me how you do it or keep quiet as my ” dramas” are very important you know !! ” The undercurrent of hostility so often is breathtaking as a lot of people are so pissed ( American sense of angry ) with me for not whinging . I don’t collude with views points or attitudes that basically suck life dry . Big thanks again and again .

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  3. Catherine

    Any suggestions about how I get support for my just giving page . Too few have had to carry the slack when bills kept coming in , so am wanting to spread the load and reduce some of the pressures for them . I want to also raise awareness for what we live with .

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    1. Jak Post author

      What a wonderful thing to do Catherine 🙂 I’ve never been involved in fundraising I’m afraid, but I’d suggest you join the Facebook or Twitter pages of local and national organizations and ask if you can post a link to your page on their sites (sorry, I’ve forgotten which conditions you have, my memory is non-existent!). You can also post links on support groups online, though I’d recommend asking the site owner if it’s OK first. You could approach the media eg. your local paper, and ask them to do a piece (they like human interest stories). Just a couple of thoughts off the top of my head. Good luck!

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      1. Catherine

        Thank you for those ideas , very helpful . I have EDS, POTS, MACD,( plus EPSTB ) and now being checked for Ms . Highly unlikely but the brave Surgoen who has to do two more spinal operations on me ,due to the above is being thorough . EDS does seem to mimic so many other horrible diseases , it seems. It’s very hard sometimes getting any real support at all when I look so well ! Impossible situation that you write so well about .😳👍🏻

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  4. Livvy Sheep

    Thank you Jak.. Needed that slap in the face! Seems your channelling some Bear Grylis type attitude again! Very cool and agreed with other post about weariness of being doubted and judged by Gps ect. Gotta love ya and give you a soft ladylike hug for making me get my mojo back. X

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  5. kneillbc

    For some reason, I’ve only just seen this post What a great reminder- I’m pretty sure I’m one of those folks youre talking about….It is so frustrating when you KNOW what you need, and trying to get it is so damn hard. I have a few docs in my corner now, but I actually have to go and see a psychiatrist so that he can say “Karen does not have a psychiatric disorder.” I have to officialy ‘rule it out’, because every time things get difficult, or someone wants to dismiss me, they use the ‘somatoform disorder’ door- one even used the Munchhausen’s- AFTER their ER purposefully set off a reaction, and was completely astounded that they had to use epi…they pushed it until I had no pulse (I havent told this story in my blog yet- too painfull to fully describe the details- it was traumatic). The psychiatrist came in about 15 minutes after that, and used the fact that I had eaten something that I knew I was reactive to, to justify ‘self harm’. Um….I don’t do that at home, you idiot! The doctor asked me to!! FFS.

    I’m exhausted, but I need the medical system- the meds, the fluids, they DO help. So I cant abandon it completely. I can’t tell you how many times I have been tempted to think ‘I’ll just go and live in the woods like a hermit- somewhere far away from civilization, forage for wild food- nothing that isn’t processed by me… It would either kill me or save my life. A bit poor odds, although I’m a very competent woodsperson, I don’t have the physical strength right now. The thought of chopping down even a small tree- I’d be done in 10 minutes. And I’ve used a LOT of my reserve (I’m down 55 lbs…).

    Which reminds me- what a fascinating experience to have had people notice you. Because I’m overweight, I am invisible- nobody looks at me. If their gaze does rest on my body, it is usually followed by a look on the face that they smell something off. The judgement is astonishing. Doctors saying things like ‘Well, you’re obviously eating SOMETHING…”. And “It’s not like you’re exactly starving.”

    Sigh. So glad for the internet. I cant fathom how I would be doing if I hadn’t found you, and then others who’ve been there.

    Thanks Jak. I needed that reminder that Im not alone.
    K

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    1. Jak Post author

      Bless you Karen, you are having such a hard time of it atm 😦 I can relate to your ER story. At one stage I was so ill with my ME that I could no longer continue to live alone. My GP tried to help and got me a month stay in a neurological rehab ward for respite care. I weighed 6 stones (84 lbs) because I was too weak to chew solid foods and what I did eat brought on oesophageal spasms or made me sick. The hospital immediately sent for the psychiatrist who diagnosed annorexia. FFS! I was *starving* hungry – I wanted to eat but physically couldn’t. They of course thought ME was a mental health/behaviour illness and I could eat if I really wanted to *sigh*. I discharged myself, which has probably gone down in my medical notes as me not wanting to get better! x

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      1. kneillbc

        Awful! I can only imagine. What bothers me is that SO
        many of us have these experiences. It’s not okay. It tends to make us worse- wishing we’d never gone there in the first place. And oh, the things that are probably in (or missing from) my charts in various places. And I can only imagine how many of us there are who believed their doctors. Or whose family believed the doctor….

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