April 16th 2016

I can’t believe that it’s nearly six years ago since I drove Zoë to the Outlook event at the Oxford Belfry Hotel. She was feeling apprehensive about the day because it was to celebrate people with TS as it was the 20th anniversary of the Outlook group for mildly affected adults, and her TS was something she would normally be hiding away.

However, she was soon greeted by some original Outlook members who she’d met before and and other familiar faces that she knew. Feeling happier, she talked to a young woman and her mother. It was their first visit to an Outlook event and she reminded Zoë of herself a few years before, ‘awkward but excited’. Zoë also found out that she attended the same clinic at Bath, and had taken part in the same Metformin trials that she had.

After lunch, she felt nervous again because she was going to have a video interview with Tanya, the Volunteer Coordinator, who soon put her at her ease in a comfy leather chair which made her feel she was on Breakfast TV.

This is what she wrote in her book, Rare:

Everything I imagined saying, all those worries and negativity, went out the window. Instead I spoke about the confidence these events were giving me and how being a part of something has helped me feel less alone. As I was talking, I realised that I had been isolating myself by not accepting the advantages of being involved in a support group for such a rare condition. Why make myself more of an outcast than I need to?

It’s interesting to think, isn’t it, that as she was talking so confidently, all these thoughts were going through her head.

Zoë described what it was like to be mildly affected, and how she hoped that her experiences would help others. She added that, because of this, she found she could sympathise with the people she looked after, and the staff she worked with, in her role at Mencap. She said too, how attending the Outlook events had given her more confidence, and also how volunteering with the TSA had given her a chance to help others whilst putting her photography skills to good use. Lastly, she said that as she recovered from lung surgery in Guy’s Hospital, she decided to write a book to help people with TSA, and their parents, to understand more about the condition.

Here is the link to her interview so you can see it for yourself. https://www.youtube.com/watch?v=KWSbiGC9QpI