Mental illness covered up my EDS

The story of Rachael

After recovering from a 10 year battle with Anorexia and depression, I finally found freedom. But I was then beginning to suffer again, but the doctors told me “it was my fault” for what I did to my body over the years.

I initially took the blame, but as I began to become more unwell as time passed, I knew there was something else.

I fought for a diagnosis, like many of us do. I felt like giving up so many times are hundreds of tests, scans, hospital admissions and self-research. But I continued to seek for help and eventually when I dislocated my jaw, which I had told doctors about for years, I was led to my diagnosis.

My jaw was so bad that I now required surgery, but my scans didn’t match up to my ability to open my jaw, which was the first indication of severe hypermobility. I wasn’t allowed surgery until they knew why this was and when referred to a specialist, he saw “as clear as day” that I had Ehlers-Danlos Syndrome.

However it wasn’t as easy as this. I was now residing in Malta as I had moved on medical requirement needing warm temperatures. We didn’t know why at the time, we just saw my body break down to the point of hospitalisation every winter, and when at risk of losing my extremities, I had to make the move quickly.

Without the specialist help I need in Malta, I have to travel back and forth to the UK for the surgeries. Amazingly this is sponsored by Malta which I am eternally grateful for, but the system is incredibly complex and I still find myself fighting for help with such severe, widespread symptoms and still a broken jaw. It feels as though I now slip through the net from being a UK citizen but a Maltese resident.

To add to the mix, my body now finds Maltese winters too cold and after being hospitalised again and my body fighting for it’s life in February 2023, I was told I had to leave Malta during the winter.

I now write this from New Zealand, where I am trying to create another base to come back to each year. UK, Malta, New Zealand… the time zones are quite a challenge to keep life going in all 3.

But despite this, I have my own Pilates business where I teach clients privately to help them with different aims, goals and ailments, as this has worked wonders for me over the years.
I also run a Mental Health charity, Walk and Talk, to offer support from my own previous experience with this.
And I have written a book about my Mental Illness, “At War With My Mind”, currently now writing the sequel, “At War With My Body”. Both of these are written from diaries kept to show the reality, as well as offering hope of living a good life no matter what.

Aged 30, I feel my body deteriorating quickly. Osteoporosis, Arthritis, Elasticated skin, Spinal shift, dislocations/subluxations, muscles spasms, chronic pain… the endless list all becomes so normal and just daily life. I don’t know what the future holds and each year my disability will worsen. It’s something I have come to accept but still scares me and always will.

But I now live every single day to the full. I have just travelled Thailand for a month and now in New Zealand, this may have been medically required but I made sure to have the time of my life as well!

I do so much to keep myself as well as I can. Conventional an alternative treatments, nutrition, rest, movement, whatever it takes! DON’T GIVE UP! Who doesn’t love a Zebra? 🙂

At War With My Body