One of our researchers talks about life with her younger sister who lives with TS

This blog is written by Diana Beljaars a PhD researcher from Cardiff University in Wales. Diana is originally from Holland and speaks Dutch and English. In this blog article she writes poignantly about her relationship with her sister who has Tourettes Syndrome.

My Touretty sister and me

Tourette´s has been part of my life for many, many years, but came into it since early puberty. Before that time memories stretch back to winter afternoons playing in our play corner under the stairs and summer afternoons playing under the pine tree in the back yard of our parents´ house. Youth pictures in my album mimic the light-heartedness of my memories remarkably well. She was just my sister, annoying as little sisters are, but equally as cute…

Then, things changed. She started doing ‘funny things’ with her eyes and nose, and I remember her being taken to an unending list of doctors. As an unknowing sibling in early puberty herself, I felt her withdrawing from my life, being taken up by her condition.

I, as everyone else, couldn’t quite relate to her as I used to. The condition, that finally could be named Tourette syndrome, both mystified and coloured the image I had of my sister. Sometimes she seemed too far away to connect at all, consumed by her body that made her do things she didn’t want.

Sometimes she did things that intrigued me but could never be understood by me. For instance, not being able to carry the plates with cutlery on them to the kitchen after dinner “because she just couldn’t”. Nonetheless, we fought as fiercely as we found each other in shared obsessions, such as the holiday without our parents in Italy. Despite me not being able to predict her, she was still my little sister and I felt deeply responsible for her. It might be the type felt by each older sister, but maybe also because of her unique vulnerability. Our years in early twenties we grew more apart, as I went off to university. Dealing with my own problems, she left my mind bit by bit.

It was only at the end of my studies in human geography (a social science concerned with the spatial relationship between people and places) that suddenly it hit me: my sister’s condition had highly spatial pronunciation. With her touch tics she used the objects that made up her everyday environments in a such a specific and unique way that I decided to combine my understanding of the disorder and knowledge and skill human geography. With the research proposal she came flaming back into my life.

We went to a conference on Tourette’s in Greece where she, as subject of their study, spoke to a big room filled with people. Twice. I couldn’t be more proud of her. It was in that moment that I recognised the little girl I used to play with in her. I realised that she couldn’t have been more herself in the moment, and that the Tourette’s had never mystified and coloured her: it was me the whole time. I, as product of a society that values the normal and logical in people drastically failed in understanding the beauty in her tics and twitches. Now, my sister and I get along better than ever. She is just my sister, annoying as little sisters are, but equally as cute.

If my research is good for anything, it is in the fact that an inability to relate to a different form of humanity should invoke an openness to its capacities. Or put simply, if you can’t understand why somebody else is different, you should be open to understand what makes him/her beautiful and capable of extraordinary achievement.

Diana’s sister has been blogging for Teens4TS for more than 2 years now. Read all about her adventures here!

It pays to ask if anyone has any questions

Today was my annual meeting with my RA. Every year the RA’s at my college do something called a 1-on-1 with each of the students on their floor where they meet with them and get to know them. I had already e-mailed my RA about my Tourette’s and I did my little 1-minute Tourette’s speech for my floor last week.

At the end I said, “If anyone has questions, feel free to ask!” Today during my 1-on-1, my RA took me up on the offer and told me she wanted to learn more about Tourette’s. We talked about regular things first like how I’m liking my junior year, what classes I’m taking, and what other things i’m involved with on campus.

Then she asked me several questions about Tourette’s such as, “Does everyone with Tourette’s have vocal tics?” “Is it genetic?” and “Is there treatment?” I was more than happy to answer all of her questions and was really glad she asked them. I love it when people want to learn more about TS, and I love spreading awareness!

After I was done answering her questions, she said she was really glad that I was open about my Tourette’s and willing to talk about it. She had a friend in high school who had Tourette’s but never got the opportunity to ask him questions about it really and was really glad to learn more about it. She said she really likes getting to know more about people and the experiences they’ve had in their life. I just love people like that! 

Got my mouth splint today!

Got my mouth splint today! I’m excited to finally have something to give me some relief from my jaw clenching tic. My orthodontist explained it as a band-aid for my mouth. I’ll start wearing it every night to give my jaw some relief when I sleep (I clench and grind my teeth even more in my sleep apparently), and if I ever really need to I can wear it for relief during the day, too.

I’ll probably only ever wear it at night or on weekends (even though it’s transparent/clear colored, it’s pretty notifiable). It feels good to have it in because I know my teeth are protected. My dentist told me if I didn’t get the splint, I could end up with permanent damage to my enamel and have to end up getting crowns on most of my teeth.

This is the first tic that has done damage to my body, and while its a tough realization that one of my tics is actually doing real damage, its important I know so that I can take the proper steps to protect myself and my body.

Me, my studies and TS

We caught up with A Level student Ellen to have a chat about all things TS.

How old were you when you got diagnosed with TS and how did you feel about this?

I have had Tourette’s for as long as I can remember, but I was never properly diagnosed until I was about 14. My parents tell me that I used to blink excessively when I was little, which, at the time, they just thought was down to me watching too much television, but I now know to be a tic.

Since I am quite good at suppressing my tics in public I was less sure that what I was doing had an actual name. I was always worried about what people might think if they found out the full extent of my tics and, what with the wide array of problems you find yourself faced with in your teenage years, having people discover that I had Tourettes Syndrome was not top of my priorities list.

Getting properly diagnosed was like a weight off my shoulders. To be able to give it a name and to know that I wasn’t the only one was a relief and it made me feel so much better about myself. I could now think, “Right, OK, this is what I have, and this is how I am going to deal with it”, instead of always worrying about why I was doing what I was doing and how other people might react.

How has school been supportive and in what ways have they helped you?

I first approached my school with the fact that I have Tourettes in the winter of year 11; the year of the dreaded GCSE’s. My parents and I explained how my Tourettes manifest and how high levels of stress affect my ability to suppress my tics in public.

Since the exam period was approaching my teachers and I discussed ways in which my exams could be made as stress-free as possible. Obviously, that time of year can be stressful for anyone, but, with Tourettes thrown in for good measure, I was worried I would struggle to cope.

My school offered me with the ability to do my exams in a separate room, and I could take time out if my tics became really bad. It gave me that extra bit of reassurance to know that I would be able to release my tics as I pleased, free from the inquisitive gazes of anyone else.

What inspired you to want to talk about TS to your sixth form?

I really wanted to raise awareness of what TS actually is and how it manifests in different people. The media often twists the reality so as to make it seem more interesting and attention-grabbing for people who don’t know much about it. I wanted to talk about what having Tourettes really means for people, especially teenagers, and how difficult it can be to deal with it, but also how it changes you as a person and the way you see the world. I was also tired of hiding and, in telling other people about my Tourettes, I felt better about accepting it in myself.

Were you nervous before giving your presentation?

I think nerves are unavoidable in any situation that involves speaking to lots of people. I am a theatre lover, and do love being on the stage, but I did feel a few butterflies. A small number of my close friends have known for a long time that I have Tourettes Syndrome, so it gave me comfort to know that they would be supportive no matter what happened.
What feedback did you get from your friends, do you feel you raised awareness of TS?

One of my main worries was that people would judge me for something that doesn’t define me as a human being. I felt that I was able to show that even though there are people who have Tourettes, it doesn’t make them incapable of being and doing other things. I wanted to be remembered as more than just “that girl with Tourettes” and everyone at school proved that that would not be impossible, which I am so grateful for.

What advice or knowledge would you give to other students who have got TS?

Don’t let it rule you! There is always someone that you can talk to, whether it is a doctor, a teacher, or a family member. If you have any worries about Tourettes or how it is making you live your life, don’t bottle them up inside you. Finding a way to deal with TS is different for everyone, but once you find what suits you, it can make all the difference.

Let’s help disabled people fulfill their potential

If there’s one thing that we progressives believe in more than anything else, it’s the power of people. That’s why at the core of us there’s so much passion and determination to unlock people’s potential, potential that’s wasted by the right’s politics of “you’re on your own.” And it’s potential that’s wasted by social security that fails to empower disabled people and their carers and, instead, traps them in poverty. That’s not something we’re prepared to stand and watch. That’s something we want to change.

In Australia, someone is registered as disabled every half an hour. In Britain, it’s every three minutes. In both Australia and Britain, one in five adults has a disability of some kind. That means that unless we give all disabled adults the chance to contribute, we’re only drawing on 80 percent of our power. We’re only firing on four out of five cylinders. That simply can’t be right.

It’s not right morally and it’s not good economically. The result is bad for the country – and it’s bad for disabled people. We believe in something simple: because disability can affect anyone, it affects everyone. That is why social security has got to change so that we make the right to live as full citizens in a free society a reality for disabled people.

In Australia, the Labor government laid the foundations for a revolution in services for thousands of disabled people, their families and carers. DisabilityCare Australia will mean that Australians with significant and permanent disabilities will have more power to choose their support and more control over how that support is provided. The program, gradually being rolled out across the country, is creating personal plans that put the goals and aspirations of individuals at the centre of the support they will receive.

The scheme will also give Australians peace of mind that their child or loved one will get the care and support they need in the event that they have a significant and permanent disability.

We think that Britain has a lot to learn from Australian Labor, so we’ll work together to study how the ground-breaking ideas pioneered by Labor can help make a difference in Britain.

Currently, in Britain, we support disabled people by putting them in the middle of a labyrinth and telling them to find their way out. There are assessments for social care. There are assessments for personal independence payment. There are assessments such as the work capability assessment.

Of course we need assessments – but at the moment, hundreds of thousands of the assessments are wrong. Years are wasted in court, where eventually 40 percent of appeals around employment and support assessments are won.

It is a monumental waste of money – £74m, according to evidence provided to the public accounts committee by Disability Rights UK. We spend £900m on Atos. We’re about to spend £540m on Atos and Capita.

It’s time to end the labyrinth. We’ll be looking at how we take the radical ideas of “whole person care”, developed by Andy Burnham, to bring services and benefits together to support disabled people in a new way. And we’re delighted that in Britain, Sir Bert Massie, a great pioneer of disability rights, will be working alongside us to make sure ideas are co produced with disabled people every step of the way.

Labour will be publishing a green paper on the idea next summer. It’ll be far stronger for the advice from Down Under.