Celebrating 2020 Tourettes Syndrome Awareness Month and Pride

Celebrating Tourettes Syndrome Awareness Month 15th May-15th June 2020 and PRIDE month, we have asked the lovely Bea Wood, the winner of Miss Transgender UK 2017/2018, to share her story with us. In an article for Sky news Bea talks about how she came out as transgender in 2013 after a long struggle. After winning the Miss Transgender UK pageant and Transgender Top Model 2017-2018, Bea explained how finally embracing her true self and blossoming as the female she is, was the most amazing life changing thing she has ever done. Although Bea has overcome these challenges in life, she still faces others when it comes to a Tourettes Syndrome diagnosis.

Bea, to start with can you share with us the current diagnosis you have?

When I was a child I was diagnosed with dyslexia, dyspraxia, and an attachment disorder, however in the last 2 years I have been checked. Dyslexia and dyspraxia were correct, and the attachment disorder was misdiagnosed, I assume it was a misdiagnosis based on me growing up in foster care. I am now diagnosed with ADHD, Dyslexia, Dyspraxia and medically diagnosed with gender dysphoria. The clinic said I show many signs of ASD, but I can’t get an assessment and they say I have Tourette’s (which I have) but a diagnosis has been difficult to get.

When was Tourettes Syndrome first mentioned?

Just over a year ago when small, unnoticeable tics turned into major tics including verbal ones.

How do you feel about not having an actual diagnosis?

I hate not having a diagnosis. There are a few reasons why. To start, when I’m out and I have tics (in particular verbal ones) when I say sorry to people if its anything offensive I normally say “I’m sorry I have Tourette’s and can’t help it”, as true as it is, without a diagnosis it feels almost fake.
To add to the down side of no diagnosis, other than here, support is hard to find as most places will only help if you are diagnosed, I still have never met anyone else with Tourette’s yet other than one old friend who has mild tics, so mild I never even noticed!

Bea, what age were you when you realised you were a girl?

The killer age for me was when I was about 7 or 8 years old.

Did it affect your behaviour? Cause you to “act out”?

For years, I hid my feelings and over compensated being a boy and even a man. I put on a front trying to be a “manly man” and in my early 20’s dipped my toe into experimenting by telling just a few people I was a secret cross dresser still keeping it secret that deep down I was trans. I came out in 2014 and it was a shock to so many. It was an incredible feeling but weird, I had never felt so free, honest with myself and others, but the pain I felt through loosing family and friends that wouldn’t accept me and wrote me off was so hard.

What was your understanding of your childhood diagnosis?

As a child I only understood dyslexia as other kids also had it and it carried a stigma of us being “stupid” even though we were far from it. Dyspraxia I was diagnosed and spat out the other end with no explanation or understanding at all.

You told me that it was when you met your partner that she began to question your diagnosis, can you explain this?

Just over 2 years ago Donna my partner asked me if I had ever been diagnosed or assessed for ADHD. I said “no only dyslexia and dyspraxia” she said “you have dyspraxia and you didn’t think to tell me” we then discussed it further and she was shocked I didn’t even know what it was, from this we did research together and pinned my behaviours to ADHD. We went to my GP and I was referred to great oaks where I had an assessment for ADHD and was instantly diagnosed and tried on meds, they said I likely have ASD but need a separate assessment which I was told 12 months wait for, 2 years later I find that they have stopped doing adult ASD assessments in north Lincs so I can’t be assessed or diagnosed.

How did it feel to receive the ADHD diagnosis?

At first, I was in a way upset, but when I started my meds it was like putting on a pair of glasses for the first time. My brain for the first time in my life stopped going so fast and I could actually concentrate. It was the first time in my life I realised that my brain was different to everyone else’s, I always thought my brain was normal and other people handled things better, I was wrong. I was so happy finally understanding myself but incredibly sad that it had taken 29 years to find out, and also that when I thought I was “normal”, actually I was different. Saying I’m “different” though is not a bad thing, I have abilities other people haven’t and I’ve learned to embrace it rather than hate it.

Do you think that if you had received your diagnosis earlier in life it may have helped you in your journey with transgender?

Without a doubt! Having a diagnosis earlier in life would have literally changed my life in so many ways! I have had 26 jobs and I’m only 31 years old, had I understood how my brain works I would have been able to find a job suitable that I could cope with and possibly had employer support, instead I have spent my life lost, frustrated and confused not only battling my gender but also my brain as a whole.

How does it make you feel when you hear that doctors tend not refer adult patients for diagnosis unless it is having an impact on their lives?

I am experiencing this exact issue myself and it hurts so much. A diagnosis is not a label to me, it’s a way of understanding yourself, being able to reach out for specific support, protection in employment as well as employer understanding, a way for family and friends to know how your brain works, and a way to educate others. Refusal of a diagnosis is (in my opinion) very wrong. No one should be denied the right to find out about themselves and have recognition that they are neurologically different to the average person, yes some conditions have flaws and barriers to overcome, but they also add almost ‘super power’ like benefits to many people and this often gets overlooked.

What would you say to an adult thinking of getting a diagnosis?

This is an easy one! For a child or an adult, I would say GO FOR IT!!! At the time it may seem scary, the potential of a “label” or the feeling of being “different from the norm” but when you think about it, we are all individual, we are all different in our own way, so if your brain works different to most other people why not have that recognised, get help where you need it, be proud of that diagnosis, understand yourself, and learn ways of tackling life your own way with a greater understanding for yourself and others around you. There is NO shame in any diagnosis, the only thing that can come from it is positive.

Bea, you have struggled in life with both diagnosis and transgender issues, can you tell us about the role you have chosen to play in supporting others going through similar situations as yourself?

When I won Miss Transgender UK pageant in 2017 and Transgender UK top model I used the platform in mainstream media such as sky news, ITV, BBC, several papers and radio interviews including some that went abroad to America and Spain. This wasn’t enough though as I wanted to create change locally, so I created BeaYourself, a support network for trans teens and parents, as well as being part of the charity stonewall as one of their UK role models. I have recently been welcomed to the team running Doncaster Pride as a team member and their official trans advisor which includes speaking in public from a trans point of view, advising the rest of the team how we make pride more about trans as well as gay and lesbian, and the movements we make all year round. I just don’t want anyone to feel as lost, scared or alone as I was for so many years.

If you could give one piece of advice what would it be?

One piece of advice is hard. so, I’ll give a few bits of advice as I’m greedy!
Always be true to who you are
Always be open minded towards others
Never be scared or afraid of getting a diagnosis or reaching out for help
And finally, if you do have any sort of neurological development disorder, embrace it, find the positives and cling to them over the negatives.

TIC Ambassador Bethany Nash asked Bea a few questions:

Have you faced any discrimination for your tics?

Of all places the worst place was in hospital! After telling a surgeon I have Tourette’s he didn’t only mis gender me several times but also said ‘what’s that odd twitching in your eyes and neck, you keep jerking your neck” I said “I told you I have Tourette’s, they are tics’ he replied “oh that’s a tic is it? Well, it’s very silly and you need to stop doing it and I mean stop doing it from now” I was so hurt and offended. Other than that, I wouldn’t say I’ve been discriminated against, but I have faced disgust and hate for my tics.

What’s it like being part of the LGBT community?
It’s a double-edged sword as with anything. We get a lot of negative media coverage, and also we are discriminated against a lot, as with any community there are nice people and nasty people, just because someone is LGBT it doesn’t mean they are a nice person, but, this aside, on the whole it’s a tight knit community and one I am very proud to be part of.

What’s the hardest thing about having tics?

For me there are two things I find the hardest. My verbal tics I hate at the best of times, but when I tic shouting “I’m a puff” or many other horrible things I just want the ground to eat me up. My tics make me shout things I would never even think about let alone say out loud and I feel like they are not even a part of me. I find myself feeling embarrassed and ashamed.
The other hardest thing is when I have a tic attack (motor tics) and my neck spasms over and over until I’m almost on the floor, it leaves me in a lot of neck muscle pain for a day or two and even when I’m in pain it doesn’t stop them happening again to cause more pain.

What’s it like being transgender and having tics, have you faced any issues?

Being transgender I have faced more problems than I can even list, having tics as well really just enhances it. Waking down the high street for example, I ALWAYS get stares, dirty looks, and sometimes rude comments from people, when I have a tic it makes it worse as it draws more attention to me.

When did you first notice you had tics?

I’ve had small tics all my life but didn’t realise, the worst offender was sniffing my nose for no reason a lot, as well as a few other things. My first verbal tic though scared and shocked me. Donna my partner and I were at a Christmas event surrounded by families of kids and adults and out of nowhere I loudly blurted out “f**k off”
It was a huge shock to me and Donna, and since then things have only got worse not better, there was a trigger to everything getting worse and the ADHD clinic have agreed with me and recognised it.

Bea, thank you so much for sharing your story with TIC, it has been a pleasure getting to know you. We can’t wait to meet you in person in the near future.

Instagram: @BeaWoodOfficial

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