life now isn’t how I imagined it to be a few years ago. I guess things do and will always change, but the last few years have been hard. In 2013 I was excited at getting my chest/top surgery referral and getting an appointment with the surgeon. I had been on T a year and was back at the royal northern college of music in my third out of four years. But in April that year things started to fall apart and on 4th may 4 days before my 23 birthday I was sectioned under the mental health act for the second time. I was due to do my end of year recital on the 7th may but obviously that never happened. I spent my birthday sat in my room on the psych ward punching walls and being watched by one person on 24/7 1-1 obs. I made the decision to drop out of music college and applied for ESA a benefit for people who can’t work due to a disability. I was in hospital that time for 3.5 months. Surgery was supposed to be in July, it didn’t happen. Surgery was then continuously delayed due to the surgeon not thinking I was mentally stable enough. However on the 2nd June 2015 I eventually had my top surgery. I’m now 7 weeks and a day post op. The first 8 days post op were tough with the drains in and having to carry them around with me in a tesco bag but now I have now pain, just the odd tingling sensation where nerves are joining back up. I never thought I would get my top surgery but I did.
Tourette’s is something I’ve suspected I may have for several years. I became obsessed about watching programmes about it, but from looking at some online stuff it said you had to be diagnosed under 18 and I was in my early 20’s, so I did my best to ignore and hide my tics, but they were getting worse and after a day of suppressing in public I would come home to my flat and explode on my own. One day I had enough and decided I had to tell my GP about the tics. Then a few months later in December 2014 I got my Tourette’s diagnosis.
It’s an odd feeling getting a new diagnosis even if you suspected it. I was releived at first for medical professionals to recognise that my tics weren’t an attention seeking thing and that they were part of a medical condition, but then a few weeks later I hated the word Tourette’s and struggled to say it. I wanted the diagnosis and all the tics gone as my tics were coming out more and more. This phase took a while to get through. Now I’m ok with having Tourette’s I don’t want to get rid of it. Yes motor tics can really hurt and injure you. I broke my scaphoid bone in my wrist a few months ago because of Tourette’s and a fall down tic in February caused me to smack my head on the corner of a walk very hard. I felt ill the next day so we went to A&E and they rushed me through for a CT scan, everything was ok and I just had bad concussion but it was scary. A few weeks after I broke my wrist I was in a wheelchair for a few weeks because of my fall down and leg tics. This was an old heavy wheelchair I just hired from a company which loans them, so as suggested by others I went to my GP to ask about a referral to wheelchair services. She raised her voice and said ‘no way’ she said I have to learn to control my tics and I either chose between going out and controlling them or staying at home and ticcing. I was so angry, more at her lack of knowledge of Tourette’s. I changed GP practice straight away, but that old GP has made me very scared to ask my new GP anything even though the new GP I’ve seen twice seems lovely.
I’ve found that being trans, having mental health problems (especially a diagnosis of EUPD/BPD as well as other things) and having Tourette’s really causes a lot of medical staff to be quite rude or they don’t know what to do, they think you are putting it on.
Earlier this year I had a short psych ward crisis admission on a ward I’ve been on before. I was obviously ticcing and they asked what I was doing I said I have Tourette’s and that it is a recent diagnosis. They clearly didn’t believe me as in the discharge letter they called my tics ‘weird personality traits’
Having said that though they are some great medical staff who get everything and who don’t ask you 101 questions about being trans (yes I’ve been in A&E where the doctor asked nothing about why I was in there but just asked personal questions about surgery and trans stuff)
Life has certainly changed, but there are some good things. I’m now in a great relationship and my boyfriend is amazing. I’ve met some new friends through Tourette’s support groups all over the country and one really locally who I often meet up with. Ive gone back to MORF a trans masculine group in Manchester and met some lovely new people and made friends with one. People are accepting that I tic now and even those who knew me before I was ticcing in public they don’t care that I now do tic in public.
Other big news is I am starting university in October. I am doing a part time history degree with the Open University and can’t wait to get going. I am still a bit unsure on my future career, but a possibility in looking into is doing my PGCE after the degree and becoming a history teacher. We shall see though.
Some change is good, some is bad and some is really bloody scary.