Friday, October 31, 2008

Don't It Make My Brown Eyes Blue

There's a scene in Layer Cake where Gene explains meditation to Daniel Craig's character Mr X as being any repetitive activity which demands concentration from the front of the brain to free the rest of the mind, in his case stripping down a weapon blindfold. I've no idea whether that is an accurate description, either of assembling a weapon or true meditation but it's certainly how I feel about death walking.

Today, bundled up in so many layers I was impersonating the Michelin man I was thinking about the nature of truth and lies. For me, going without a correct diagnosis of Ehlers Danlos Syndrome for so long has been the cause of far more damage than the condition itself could ever cause. It's impossible to explain how it really feels to be told so often that everything you say about yourself is a lie you wonder if that's true yourself. It is like being in a trap because there simply isn't anything you can do to change people's perceptions of you, and of course just being in that position is enough to effect some quite strange behavioural issues.

The only way I have been able to explain to people a little of how it feels is this scenario.

Imagine someone asking you what colour your eyes are. It's a simple fact. You might have brown eyes, or blue or even green. Although people's perceptions differ, it's unlikely anyone will try and tell you that the primary colour you believe your eyes to be actually isn't.

So, you've told the person who asked you that you have brown eyes, when to your great surprise that person tells you you are wrong. Your don't have brown eyes. They go further and tell you you are lying. You've made it all up to get their attention. You don't have brown eyes at all.

So you go away and look in the mirror. You see brown eyes looking back at you. The seeds of self doubt have been sown though and you wonder if perhaps your eyes aren't brown at all. Perhaps the person is playing a trick on you, perhaps you're colour blind?

Then another person tells you your eyes are not brown. Tells you not to be so ridiculous when you disagree and say they are in fact brown. Insists you must have some hidden agenda in saying your eyes are brown when they quite clearly are not.

Imagine that scenario repeated endlessly for years on end. Not just about the colour of your eyes, but every single thing you say about yourself. Confusing doesn't begin to explain how you'll feel after the people around you tell you you are wrong about yourself for years and years on end.

I thought the only thing to do was to tell the truth. Always. No matter what trouble it caused, I vowed I would always tell the truth. The more people told me I was a liar, the more important it became to me to be truthful. I held on to the hope that one day things would change and then I would be able to hold my head high and say I'd always been honest. As I became more and more disabled balanced only by the ever increasing lack of belief my family, friends and medical professionals had in me, always telling the truth became the only constant I had to cling to.

Of course when I was finally diagnosed it came back to bite me. I had clung to 'truth' as some sort of lifeline but it was the last thing anyone who'd disbelieved me wanted to hear.

The legacy of all this is that, despite now being surrounded by people who think the very idea of doubting me is ridiculous, my first instinct is always to think people don't believe me. It probably always will be. I'm terrible at 'white' lies, although I try very hard to be tactful. I know full well my concept of 'truth' is unreasonable, and particularly it is unreasonable of me to expect anyone else to have such a skewed concept of being truthful.

The positive is that I regularly have people ask my opinion as apparently I'm the only person they know who'll give a truly honest answer. Which, for now, whilst I try and let go of my psychological safety blanket will have to do.


Katrin said...

I'm very sorry this went on for so long for you. As a person who is very, very literal and sees things very black or white as truth or not truth, I have a hard time when people lie to me either on purpose or not, and have been called a liar more times than I care to count by people who don't understand just how literal I am.

While it's not the same, I understand the doubt that starts to happen, questioning your own thinking/feeling/etc, questioning reality and if what you think is happening is real or just a figment of your imagination like they keep trying to tell you it is.

Glad that you have people who don't doubt you now in your life. And hope that that is at least some help over time.

Fire Byrd said...

oh Bendy, this is just so sad. If we're not allowed our own truth how can we stay intact. You are a remarkable woman having come through so much. And i know cause I've met you.
Self belief is so core to ourselves, you'll just have to keep working on it till one day you actually can let go of other people's shitty messages.
I know, it's how i got here!
hugs x

Slip said...

My bride of 39 years can not tell even a white lie. Sometimes she is brutally honest. It can cause hard feelings.

Rae!xx said...

I can't believe you went through all this it is so unfair.

You are so brave Bendy and I admire you so much for not giving up when it would have been so easy to do.

(((hugs))) xx

Marla said...

What an interesting and heart felt post. I can see my daughter struggling with some of this as well.

Trixie said...

At least you DO know the truth weren't going insane, although it took a long time to make others realise this. xxx

Casdok said...

We learn very quickly that the so called experts are not expert.

James Higham said...

Truth always pays in the end.

Dave said...

So you are finally vindicated and you were right all along.
Let me tell you my story
I had osteomyelitis when I was 12 or 13- along time ago. It took ages and a lot of pushing from my mum before my GP would send me for an x-ray.It showed an infection on the bone. I was vindicated.
I went into hospital and my shin was cut open and the infection drained. A couple of months later and I had to learn how to walk again.
It could have been so different. A week before I went into hospital my leg stopped hurting. The infection had reached the marrow. If my mother and I had not kept shouting and making a fuss I'd be dead.
Good news in my case. I'm still here, moany old git that I am.They treat this with antibiotics these days. ten or fifteen years earlier in my case and it would have been amputation.

Sometimes your vindication may come with a death sentence. You win the battle but lose the war.

You might say "that's life" but remember BG- this is life. This is your life. You show us all that you can appreciate the life you have. Live it. Embrace it. Enjoy it. Enjoy it all.

The truth WILL set you free.

Nicey said...


As we get older the truth becomes more important. Thats a really great post, I am sorry it took so long, your a brave person. I have gone back through your other posts and can only think of what your going through and how you deal with it in a postive way.
Take care


steph said...


I totally understand where you're coming from here.

As you know, one of the traits of EDS is that people with the syndrome usually 'look' perfectly well. Therefore as a condition, it's very often misunderstood.

I look extremely healthy so only those who know me well, understand the constant struggle and pain I experience in everyday life. Unfortunately, people will always judge 'books by the cover' so while we can't change how we are perceived, we can change how we cope with how others perceive us.

I had to learn to give up ever hoping that my parents would recognise my condition. Like you, I lived for years with self-doubt as there seemed to be no explanation for my constant health problems. I kept being told I was just 'unlucky'. I was finally diagnosed with EDS at age 36 but my parents never acknowledged or showed any interest in the diagnosis. I'm sure denial plays a large part in the reaction to genetic conditions. I used to really resent this lack of acknowledgement but then I gradually came to realise that the loss was theirs, not mine.

Now, like you, I get on with my life as best I can, content in the knowledge that my condition is understood by those who need (and want) to know. I don't care what anyone else thinks.

And finally, I'm absolutely certain that adversity can either make or break you. As you well know Bendy, EDS'ers are not easily broken!

LceeL said...

Dear, Dear Bendy,

I know what you're talking about - not from personal experience but from the experience of my wife. As a young girl growing up she went through that whole thing of no one believing her. She has Ehlers Danlos, although hers would seem to be not quite as profound as yours.

It has gotten progressively worse over time. The thing about EDS is that things stretch - and they don't snap back. They just stay stretched.

Her older sister was diagnosed with the same condition - and THEN, and ONLY THEN, would they believe Annie. After years of complaints.

I understand you and your pain. I wish I could do for you as I have been able to do for Annie. I massage her back and ankles and knees every night - to give her ease so she can sleep. And then she gets up the next day and fights her way through to the next night - and the next massage - and the next night's sleep. One day at a time. One massage at a time. I would do for you, if I could. I feel so badly that I can't.

Ms Ordinarée said...

Bendy, you know how I feel and what has happened (with re to even so called doctors..and the consequences) to me, so I won't go on....just suffice to say that its what we do now that counts...and some of that is NOT allowing those who are toxic to us permeate our being...

Without being trite and assuming, I think I KNOW - in a funny tangent way-

Love n hugs

Ms O