Updated: Nov 17
My name is Ellen, I am 23 years old and I am disabled due to a genetic condition called Ehlers Danlos Syndrome and its comorbidities. It effects my joints, muscles and functioning of my organs and autonomic nervous system. I had up until recently used a wheelchair for the last 6 years. My health is very complex, and I also have a vulnerable immune system due to my multiple conditions and medications. This has made the pandemic and the lockdown so very scary and isolating. But more terrifying has been the lack of accurate information and guidance.
I started the year off in the best health and mobility in over a decade after having self funded neurosurgery abroad that wasn’t funded through the NHS. I had been getting my body ready for sports, like long distance walks, open water swimming and adapted triathlon. I even travelled alone to America for three weeks, and had the most amazing trip full of independence.
Then as word of COVID 19 began getting serious, my family put ourselves in self-isolation and began shielding two weeks before official lockdown. Pulling my brother and sister out of school and university before they were officially supposed to, in order to protect me. My dad also started working from home. We split the house into two for the first two weeks in order to prevent them passing anything on they had potentially brought back, with me staying in my room, bathroom and only going into the kitchen when it was empty and cleaned down. This was a big sacrifice for the whole family, and we were told by some we were being over cautious. 2 weeks later, official lock down started.
I was not contacted originally as being at higher risk and did not receive my letter declaring me an ‘extremely vulnerable person’ until May, several weeks into lockdown. This meant until then we had received no assistance with getting food or accessing my needs such as getting my regular medications from our pharmacy. Each trip out was a risk my parents made which meant we had to be very cautious in our own home.
I’ve had several occasions in recent weeks where I’ve had to leave my self-isolation to go into hospital settings. They have tried there best but many staff are also unclear on the rules. Some A&E staff wearing PPE and many not, having arguments on what the official government guidelines meant.
I’ve had many important hospital appointments and procedures cancelled which greatly effects my quality of life. But its not just this. The isolation is horrible.
Especially with lockdown easing and restrictions being lifted. We are left utterly confused on the rules. As the world starts reopening, my world gets smaller. As more people flood to the beaches, I can’t even leave my house in fear that people passing my road trying to get to the local beach will ignore social distancing rules.
I feel very forgotten when my very needed medical care is put on hold, whilst others are out shopping and now going to the pub. At the beginning of the year my health and mobility were the best it has been in a decade. I want to return to university in September to finish my degree but already have fears. Not due to the social distancing but that my heath has deteriorated during this period without the usual access to care and how long it is going to take for things like nursing, occupational and social care assessments, with months of back log.
This entire time we haven’t known what the right thing or the wrong thing was. It has been so isolating for the whole family. And we do not know how to go forward.
My future has gone from the unknown of my disability, to looking up with a positive future ahead after years of adapting and healing, back to completely facing the unknown yet again.
Thank you to Chris Sanders-Browning for providing the artwork.