Originally when I decided to make this film it was no more than a small way to deal with how I was treated at high school.
I was called many names, “liar” most frequently and painfully, by people of all ages. My mobility aids were stolen, I was pushed over, isolated, and mocked. I spent my teen years kept from anyone my age like I had some terrible contagion that would ruin their lives like it had mine.
I mourned the loss of my mobility, and of my adolescence, stressed and alone, noticing changes to my life everywhere I looked. My exams took priority over my own health so I was led to believe it was gone forever (something I have since learned is definitely not true).
I hadn’t embraced my own feelings over this since it had happened, and when I saw the same anger and loneliness in other teenagers going through what I had, I realised I might be able to do something with my film.
Even if it was only to make people feel seen, to feel heard and know they weren’t alone, I thought it might be enough. Perhaps I could prevent a teenager trapped in bed for the third week in a row from feeling as lonely as I did when it was me. Perhaps I might even make some people aware of an issue that they hadn’t thought of before.
Since releasing the film I have had messages from so many people. Some who have their own experiences telling me they felt like I captured their experience over a period of years, in minutes, some sharing stories of their friends who went through something similar, and some from people horrified and surprised that these were how disabled teenagers were treated.
I did not have time to show everything in the film (if I did it would have been several hours long) but I am delighted that it was long enough to do more than I ever thought it would, and I hope it reminds those of you that need it most that you aren’t alone.
RACHEL (BETH’S MOTHER)
As you can no doubt tell, Beth is an incredible young lady. Before she was diagnosed, and before her symptoms became severe, she spent her childhood watching her elder brother struggle with misdiagnosis of his EDS and POTS. He was finally diagnosed alongside Beth, 9 years after being told he had a conversion disorder/ME and there was nothing wrong with him.
He has been spat at in the street by an adult who walked into his wheelchair, and was very badly bullied when he first became ill, to the point that he developed PTSD. Beth’s little sister, Jane, is 17 and has also been diagnosed with EDS and POTS; she is the dancer in the film, and also struggles with her symptoms on a daily basis, and the attitudes of her teachers and other students.