Story about Hereditary multiple exostoses , Von Willebrand Disease.

To reader: Life with HME

Jul 26, 2016

There are many different ways to live your life. There are many different walls put in front of you throughout your life. Some people lose a family member, others a love but few have to battle against themselves and the misfortune of an illness. Having an illness is one thing, one big wall on the road through life; but not knowing why makes it a hundred times harder. It is at this point of not knowing you feel the most venerable and a wall gets built a hundred times stronger than the first. The key thing to remember is when it all gets tough and things start to spin into darkness, you are not alone, listen to my story and remember…

Every human-being, every man, every woman and child is guilty of is judging their fellow human-being.  In every work place, from a small nursery to a company there will be fear.

When I was younger everyone knew how to hurt me.  I remember getting home from school, going for a walk, (not because I liked walking or the wind against my face) it was so I could cry without anyone finding out.  When looking back, you might say I was in some kind of pain but not because I hated who I was, more how others saw me and how I let that influence me.  For most of my life I have had to deal with the cruelties of children, because most came to the wrong conclusion.  I can think of many examples such as “freak” or “squint legs”.  It is saddening to think that these are the choice phrases my fellow students could muster up, in many ways I am sure they lacked the “imagination” to improve their creativity.

Many people have informed me that they too understand what it is like, but the reality is very different; few truly know how it makes another feel when they are “different”.  To be told you should not be alive or to just go home and die makes you feel alone and you are forever hiding, it’s enough to make you dejected.  It is enough to make me cry because the sad fact is after a while you actually start to believe the punishing words been thrown at your ears; day after day.

In my case people didn’t “understand me” because of who I was physically, so it’s not as if I could help it.  Most didn’t understand what Hereditary Multiple Exostoses (HME) or Von Willebrand disease (VWD) was.  I know now that this terrible inconvenience scared them, and to tell you the truth, it scared me too.  If it were not for these people bringing me down and making me feel the way I did, I can say without a doubt I would be a whole different person.  So in a way I guess I owe them a thank-you because I would have hated to be the one causing pain for others.

My HME is very rare and not much is known about it yet.  Some find it disgusting.  However they fail to realise it won’t disappear.   I do have Hereditary Multiple Exostoses.  People tend not to think about how much I struggle to do things; they never have understood, but perhaps I ask too much of them to do so?  Some ask me why I was born.  Why not just give up? There was a time when I would have had no idea how to begin to answer them.  Now I can: it will make no difference, I will still have HME tomorrow.  All I want is acceptance; it’s only human after all.

I have often thought about a life without it, a life free of HME, who I would have become, and every time I decide I would not change.  Because it causes me pain and is challenging 99% of the time it has made me stronger. During the surgeries, I was scared (even if I was smiling), it wasn’t so much the pain I was scared of but the gossip among my fellow students.  I remember going into get my surgery; for me it was exciting, getting to see everything that was going on around the hospital. For others I was a freak. 

I like to think it has made me more prepared for the world, it has brought me out of the comfort zone I feel so many my age are caught in. An example of this would be a girl getting all emotional about breaking a nail or being dumped by “the love of their life”.  I know what it is like to have to fight for something; I have been fighting for years, only I have been fighting myself.  I know how hard it can be.  There were many days when I starved myself; there were other days when I just slept to avoid the different possibilities and misconceptions.  I didn’t sleep because I was tired; I slept because I was hurting.  It was the kind of hurt that consumes everything, the feeling of being rejected.  I would never wish that kind of self-hatred upon anyone. Not even the ones who hate me.

Growing up I was made to feel hideous, I was told to hate myself because i was “unique” but now I am proud of who I am, and ashamed to believe otherwise.  I don’t care anymore.  I have met so many people who have been in the same boat, but who still smile every day. You may be reading this and saying “what a cheesy thing to say” or you might just be sitting and asking yourself when to let a tear escape you, not because you are touched but because you have read so many essays of the same nature; and by this point all you want is a good cuppa.

So I will not tell you this is different to all the rest, because it is not.  I do know I would never have the strength to watch my child grow up with this, the way my dad watched me; because it consumes you. I know that every time my dad looks at me he prays to have the power to take the HME away.  If he could, he would take all my pain and bare it himself.

I could never have a child, knowing how cruel society is to children with special needs.  I have to say it’s not so much the pain of it physically but the pressure emotionally that drains your energy and without my dad there in my life for support, I would have given up long ago.  He suffers a great deal of pain every day, but still puts on a brave face for his family, for me. 

I am not going to say I have always accepted my differences, that would be wrong.  It is really only in the past year I can honestly say I feel good about being me.  I owe that to my closest friends.  They don’t see me as different, they don’t see my scars, and they see me for me.  That is a gift truly underrated.  They think I am beautiful and some days, just for a moment, I believe them.  It has taken many years to feel accepted.  It is one of the best feelings in the world, one which many take for granted.  I don’t have to hide like I used to.  I can be what I want to be, because now there is nothing to prove, for the first time I have friends. They love me for my HME. 

So you see you are not alone, even if some days it feels that way. It is when life puts these walls on our path that people truly see, that you truly see what makes us human and what makes you human. The most important thing to remember is to fight it, fight the pain and the judgments after all at the end of the day only you have the power to hurt yourself.

Now I don’t know what point in your life you are at, I don’t know what conditions you have, and I don’t know how you feel. Why, because I am not in your shoes. I am just me, and I am scared, maybe you are too. I know that doctors don’t have all the answers; that I accept. I will however not accept people like me; with special needs feeling like nobody cares. So if you are one of those people, someone like me, or are close to someone with a illness and just need someone to hear you out then please send me a message, share your story on the wall and I will listen, and maybe just maybe you won’t feel as alone.




 Your friend


If you wish to know more please feel free to look at my blog

Know someone who should read this story? Share it


Login or register to leave a comment

Hereditary multiple exostoses advice

Which advice would you give to someone who has just been diagnosed wit...

Hereditary multiple exostoses causes

Which are the causes of Hereditary multiple exostoses?

Hereditary multiple exostoses treatments

What are the best treatments for Hereditary multiple exostoses?

ICD9 and ICD10 codes of Hereditary multiple exostoses

ICD10 code of Hereditary multiple exostoses and ICD9 code

Hereditary multiple exostoses symptoms

Which are the symptoms of Hereditary multiple exostoses?

Prevalence of Hereditary multiple exostoses

What is the prevalence of Hereditary multiple exostoses?

Do I have Hereditary multiple exostoses?

How do I know if I have Hereditary multiple exostoses?

Hereditary multiple exostoses jobs

Can people with Hereditary multiple exostoses work? What kind of work ...