First off, I should probably say, this is really hard for me to
talk about. But, who knows, it might help someone else – and if it does then it’s
well worth sharing my story.
I have a condition called Septo-optic Dysplasia, a rare
congenital condition that affects less than 1 in every 10,000 people.
It affects me in a few major ways; I have an absence of Growth Hormone, poor
vision that also presents itself physically as a ‘lazy eye’ and as nystagmus, and it also negatively affects my
mood and general sense of ‘well-being’.
The absence of Growth Hormone doesn’t
affect me much physically now, but it did as a child (I took injections each
day to help me grow, and I reached a whopping 4ft 11″!) and it probably
will affect me in the future, as it’s known to cause bones density problems in
later life. I am very lucky, though, that the condition can be a lot more
extreme than the extent to which I am affected.
The effects on my mood, anxiety and sense of ‘well-being’ are the most
obvious to me at this point in my life. I struggle to complete basic tasks
sometimes, and struggle massively with anxiety. I don’t think I’m depressed,
but I’m definitely at low-mood status 90% of the time. The low mood has
definitely been the main culprit in my weight gain. Abdominal fat stores are
high in those with SOD – and I can definitely vouch for that…
Of course, another major affect it has is frustration. I get so angry and irritated sometimes, mostly by my sight. If I miss a bus because it was too close for me to flag it down by the time it got close enough for me to see. Or if I’m cleaning the house and finish off thinking I did an amazing job, only to realise up close the floors are still filthy. I don’t know if this is the same for everyone with poor sight, or it’s just that I have an awful temper sometimes!
I can pinpoint the moment I knew I was different. I was in Year 2 (7
years old), and I accidentally tripped-up a boy from the juniors school in
the schoolyard. He must have been embarrassed, because he jumped up and kicked
me hard in the leg, and I fell to the ground. He kicked me again, and told me I
‘was like a monster, with ugly freak eyes’. That boy, now a man, probably will
not remember me, or the things he said, but for me it changed everything, and
it is something I will remember for the rest of my life.
Since then, being a little bit different has been a driving force
rather than a setback. I did well in school, and went to university. I
performed a lot on stage as a kid and worked a little in TV & film. I have
a husband and a decent job, and a house of my own. I have not achieved anything
spectacular or out of the ordinary, but I feel proud of myself for achieving
things that were a little harder for me than they are for the average person.
Sharing this is therapeutic for me; having to force myself to
think it all through makes me a little sad, but mainly proud of my
determination to live as ‘normal’ a life as possible. I’m also sharing it in
the hope that it might help someone else realise that differences are a
blessing, not a curse. No one can hold you back but you!
Have a great week everyone