'The Invisible Illness'
I am Yasmin Wilson 20 years, a final-year film student from West Sussex.
I also have Ehlers-Danlos Syndromes (EDS). EDS and Hypermobile Spectrum Disorders (HSD) are disorders in which the connective tissue is faulty.
For me, this means overly bendy joints that dislocate often as well as issues with my internal organs.
When my University gave me the task of making a documentary I knew I had to talk about EDS and HSD.
Creating this film was certainly a challenge, especially mixed in with the issues caused by COVID19.
However, I was fortunate enough that SEDS had supported me throughout the production- including covering costs for my physio which gave me the extra mobility I needed during a stressful shoot.
This helped my body keep up with the demands on it which I believe, made a better film.
The physio at a SEDS recommended local practitioner in Crawley meant that I was able to keep on top of my health- as much as possible. I gained a new perspective into a world where EDS HSD was known about and it further drove my ambition to make the documentary the best it could be.
I touched on issues such as the diagnosis journey, how chronic pain can affect mental health, issues with healthcare services, and internalised ableism. Despite all the weighted questions, it was important to me to contest the classic idea of ‘disabled’, and show that we still have our own lives outside of our disability.
I often found myself struggling emotionally and having to take regular breaks in production. Interviewing people, whom some have had different experiences was a true reality check. I don’t know what my future holds with the condition and that scares me. Despite that, and despite how difficult I sometimes found the process it reinforced to me that I needed to make this short film. To show and communicate how hard life can be with EDS HSD, and how intimidating it can be too.
Learning a lot about ethics was key to this project and I do feel more confident in knowing where to push for answers and where to step back. For example, always making the answering of all questions optional ensuring that my wonderful interviewees remained comfortable.
I hope that you enjoy the documentary, I do intend to make a longer cut at a later date.
I poured a lot of myself into this project and I hope it shows.