8: Meeting Lucy

Some months after my diagnosis my mum took myself and my siblings to meet another girl of my age who had TS. We took a long drive out to Lucy's family.

Lucy was very pretty (still is!) and we hit it off very well. We sat in her room and chatted about our lives and families. We went for a walk around the area Lucy lived. Our mums watched a video on TS.

We watched a pirate copy of 'return of the jedi' with our siblings which we enjoyed. My brother made a cheeky comment about it being a pirate video.

Lucy' mum took a photograph of us all on her couch.

It was a very happy day. I was delighted to meet such a sweet person as Lucy. However my parent decided not to keep us in contact as they thought it would be a forced friendship. Again they thought they were doing the right thing and I appreciate it was not an easy call.

It would be several years until I met another woman with TS. This would be when I was at University, when I went to a conference. It would be 13 years until I met Lucy again.

Meanwhile I went through my entire adolescence without any contact with any other girls/teenagers with TS. I felt for years like I was the only person with TS in the entire world. I even created an imaginary friend with TS to get round my loneliness.


I still feel a sense of loss about the years of friendship Lucy and I could have had if we had been in contact through our teenage years and early twenties. and what strength we could have given each other. It would have certainly made me feel less of an outsider. Since Lucy came back into my life almost 13 years ago her friendship has given me so much.


I would advise any parents of girls and adolescents with TS to ensure that their daughters do have regular contact with other girls and teenagers with TS.