Claudia wanted to share her story of TSC so that she could help to inspire people to live their best lives, regardless of what is thrown in their way. Claudia shows us that even after different challenges, people can go on to live rich lives. She also helps to remove the complete misconception that people who are autistic lack empathy.

“I was diagnosed with TSC at the age of three. The doctors noticed ash leaf spots on my skin and I had a small growth in my brain which contributed to me having seizures. I have had epilepsy since the age of two and have been on a wide range of medications as my epilepsy is refractory (hard to control). I have been to many hospital appointments to check how I am doing and whether my seizures were well controlled. It wasn’t until I was in Year 6 that I found a combination of medications that worked well to control my seizures. These were levetiracetam and topiramate. I was on these for 8 years, but I had to come off them as when my paediatrician weaned me off them to see if my seizures had reduced in frequency and whether I could now take a lower dose, I started to have rectal bleeding. This meant that I had to find another combination that worked for me as the levetiracetam alone has never worked for me.

It wasn’t until the beginning of Year 12 that I got put on zonisamide. This happened to be one of the few medications that I hadn’t tried as I have tried pretty much all of the suitable medications for me over the years, and whilst there are other anti-epileptic medications I didn’t try, this was because some of the side effects were weight gain, chronic anxiety and depression, which I was already suffering from by being bullied at school.

Secondary school was hard for me as I knew I was different to the other girls in my year, although I wasn’t sure why. I was really shy and this anxiety got worse over the years due to being bullied and picked on. I was never selected to be in anybody’s group for group projects and nobody wanted to pair up with me. This led to me thinking that I was broken, that there was something wrong with me, and I didn’t ever want to go into school in case I got bullied again. Over time, my mental health got worse and worse and I developed depression as well as general and social anxiety, both of which still affect me today. My self-esteem was at its lowest at school and I felt like giving up. All of how I was treated at school has left mental scars that are with me today. It has contributed massively to how much I worry about what other people think of me, whether I am performing well enough in the workplace, whether I did or said something wrong in a social event, and me masking who I am. This is my life on a daily basis.

It was not until my paediatrician said to my mum that he felt there was a psychiatric component to my TSC, that we found out why I was different, and where the anxiety and bullying had stemmed from. In 2013, I was diagnosed with having Asperger Syndrome (which is now diagnosed in modern textbooks as being part of Autism Spectrum Disorder), which explained why things had been so hard for me and why I had some of the social behaviours I do. Even though the diagnosis helped to explain this to my parents and myself, my depression and anxiety were still there, so my psychologist helped me find ways to manage my anxiety. I ended up taking antidepressants to help get me off the ground, so to speak, and move forward. However, I am still taking them because one of the side effects of levetiracetam is anger and depression, and if I was to come off them the anger from the levetiracetam would come to the forefront again.

Once I had left school, I went to university to study horticulture. It was a good experience being away from home as it prepared me for later life. However, I found it hard socially, and although I did make friends at university, I haven’t kept in contact with any of them as they live very far away from where I live, so meeting up with them would be hard. Also, some of them I just drifted apart from naturally. I tried to find a job in horticulture when I left, but a lot of these roles require a driver’s licence, which I did not realise would be the case when I applied to study it. This meant that I ended up doing temporary garden maintenance jobs with the plan of eventually finding a permanent job, but turned out to be impossible as they either wanted at least a year’s worth of experience or a driver’s licence, neither of which I had.

In the end, I started to look at alternative options for me, and I came across pharmacy apprenticeships. I managed to secure one for March 2020, but then got made redundant because of the Covid-19 pandemic, so I kept looking for new pharmacy apprenticeships, and eventually got given a job offer for a Pharmacy Assistant Apprenticeship, where I completed the Medicines Counter Course and Dispensing Assistant Course. I am now working at a hospital as a dispenser, and hope to become a pharmacy technician or Accuracy Checking Technician over time.

It was a long road to get to the job I am now in and to be able to be confident enough in interviews that I would leave feeling I might be offered the job, but I am pleased that I changed career path as I am able to use my knowledge of epilepsy medications and what it is like to be somebody who is different and has conditions to deal with on a daily basis to help others. At the moment, I am working as a counter assistant, which involves giving advice on over the counter medication, and handing out dispensed medication. Over time I will be dispensing hospital prescriptions. It is also nice for me to be working somewhere that I have been going to for years for hospital appointments myself, so I know how the customers feel when they have to wait a long time for medication as I have had to myself.

Due to being different and all the life experiences I have had, it has made me a very kind, caring, empathetic and non-judgmental person. I have a great passion for making the world and this country as friendly and non-discriminatory to disabled people as possible, as I still face discrimination and bullying in my adult life and it is really important to me that equal justice is achieved for those who don’t have life as easy, whether it is because of finances, disability, race, sex etc. I still go through some of the same experiences today as I did at school, and when I do, it brings back the trauma from school. It is still very hard for me not to care what other people think of me, and it probably always will be. This is partly because of the stereotype that some people have of autism, which is that we don’t have any empathy and don’t necessarily want friends, when in actual fact, I really want friends and am very empathetic. I have tried throughout my life to be a good friend to people and have ended up getting nothing in return.

I hope that through reading my story of TSC and the associated conditions that I have as a result of it, you can see that although life can be hard, there is still light at the end of the tunnel, no matter what it is that you have or that life throws your way.”