Describing what living with TSC is like is quite difficult. On the whole I live a normal life. I have a normal level of intelligence, I have a job, an honours degree, and I have strong interpersonal skills. To the outside world, nobody would suspect that I have Tuberous Sclerosis. The main reason being, society doesn’t know what to look for to suggest that I have the condition.
I feel however, because I know I have TSC, that society would try and pick out something wrong with me, such as an imperfect complexion due to the facial fibromas, which puts so much pressure on young people and women especially. But what person, whether they have TSC or not, has not felt like that in some way, some time in their life? We all feel different, no matter who we are.
I have felt self conscious throughout growing up but I feel less so today because I try not to compare myself to how anyone looks as much as I can. I look to others who have a natural air about them or something unique that makes them beautiful. I admire authenticity, and turning towards glossy magazines and media for our inspiration may only make us feel insecure.
Sometimes I feel I live a double life. I have my everyday life, where I go to work, socialise with friends and take for granted being able to do things independently. Then when appointments come up, something stressful arises: I have a seizure and I am reminded that TSC is apart of me as well; I go to the TS clinic at the Royal United Hospital in Bath and I am reminded that I have TSC; I go to the LAM centre in Nottingham and have a lung capacity test, and I am reminded that I have TSC and LAM. At those moments it feels horrible to recognise that I may not always be normal, but that I am grateful for all the support that I am given by the medical professionals who I see throughout my TSC and LAM journey.
The great thing about being a mixture of two people is that I can utilise my skills and knowledge from both areas of my life and combine them into something great. I am a support worker for adults with learning disabilities for the charity Mencap. I have been working with Mencap for just over a year and I enjoy my job immensely. I have also developed many great work relationships with the people I support, which has helped me learn a lot about myself and other conditions. I can understand their anxieties, particularly if they have a health check-up, or even just understand what it’s like to be conscious of the body and its health on a long-term basis. And the wonderful thing is, they don’t even know I have anything ‘wrong’ with me. I am just Zoë, the support worker and key worker, who comes to their supported living home several times a week.
I have been trying to understand for a long time whether I am normal or not, but it’s best to go with just being me. I am a fluid person, a mixture of normality and TSC, and now LAM. Having two rare diseases can make me feel alone and isolated at times, and it’s taken me a long while to reach out and join the support groups like Outlook because I felt inferior asking for help. Asking for help however, is a sign of strength and it has reduced my isolation immensely. I have gained confidence in myself that I never knew I had, and now accept who I am as a person. There is no denying what I have. I am grateful that I have TSC, because it gives me an extra dimension as a person. Although I have had some tumultuous experiences with both conditions, many good things have come out of it.
If you want to know more about what how I am affected by TSC, you can also find a previous article in the Spring 2015 edition of SCAN on www.tuberous-sclerosis.org