Living with a chronic illness

Posted 6hrs ago
by Missy Hood

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My name is Missy and I come with accessories. Some are obvious, like my wheelchair, some are hidden, which do you think are the most hard to live with?

At least the physical speaks for itself but imagine having to wear a tag to warn others of my other limitations. It’s not nice!

Did you know it is a myth that a common symptom of Tourette's is to experience involuntary swearing all the time, that’s not true, in fact those that swear only account for 10% of confirmed Tourette cases.

However, most of us cannot control our impulses......

I remember I once almost closed an airport, as I arrived to check in, from nowhere I heard myself shout “bomb in airport” let me stress this was NOT the highlight of my life, being publicly taken away for questions was not fun at all.

Did you know that TICs can be painful? Not many people realise that. I am not talking about the clicking or whistling but the involuntary throwing your head back, throwing myself out of my wheelchair or when I lock my neck to the side, to name just a few actually cause me a lot of pain, I may mask this by making jokes or laughing about it as a way of coping but trust me – it hurts! The expectation of others is that I can control/stop this but it’s as difficult as asking me to stand up and walk! The only way to control TICs is long term behaviour therapy which doesn’t work for everyone or suppressants but again, this doesn’t work for everyone.

I wish the school would share more about this condition as I was recently asked by a student in my class if Tourette’s was contagious. How stupid is that? Tourette’s isn't something you develop it's something you are born with. I hate that I am not always invited to places as having Tourette syndrome and being in a wheelchair, seems to make everyone else uncomfortable. No one seems to talk about the loneliness and depression and anxiety of being excluded and left on the outside when friends are arranging fun events.

My best friends are either people who have similar disabilities or people who have grown up with me, but even then if I go with them, I am more at ease with those with any kind of disability as they understand whereas the ones I have known for years I feel like a burden to them.

It’s a package deal guys! Buy one and get several free! 85% of those of us with Tourette's, also have to cope with other conditions such as OCD, ADHD and Anxiety. When you also throw in my upcoming diagnosis of Autism then you really see why I call it a package deal! And you thought that was it..... but as an extra bonus, Tourette’s is linked to FND (Functional Neurological Disorder) How exciting!

So, what have you learnt today about living with a chronic illness? Could you do it? Do you feel you understand my life more? I have not even told you the whole of it! It’s Hell!

How would you feel about being known for doing the most stupid things and you can’t stop it, the sniffing, not being able to eat around others, not sleeping properly, the medication, the hospital appointments, drs telling you things you already knew about yourself, the loneliness, having no friends because of it, being uncomfortable around people that you love, feeling invisible one minute and then standing out – no pun intended – for the wrong reasons, the constant pain, feeling my role is to make everyone else feel comfortable around me and to please them all when you don’t even know how to be comfortable around yourself!

That is so depressing for a 15 year old!!!

On a final note, i have to admit it is not all bad and there are fun occasions too. I remember being in a dr surgery and my Tourette's had me randomly shout out the name “Kevin” Normally people try to ignore me, but on this occasion, someone stood up and answered me “Yes?” You should have seen the look on my face, I didn’t know where to look!

My name is Missy, I have Tourette’s, this is me!

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