Published: 03/06/2020

The hardest part is learning what my body can cope with

Adjusting expectations of myself has been the hardest part of coping with EDS.

Just like many people with Ehlers-Danlos syndrome, I remember my childhood as a series of hospital, physiotherapy, and orthodontist appointments. I was forced into wearing kids’ Birkenstocks and doing foot-strengthening exercises I never really liked. It wasn’t until my mid-teens that the pain started to become chronic. I’d get unexplained aches and generic joint pain in my feet, ankles, knees, and hips. I had to stop running and doing any high-impact sports, as I’d get sharp shocks through my knees, which I’ve only recently discovered is a sign of cartilage damage.

I realized something wasn’t right when I got stuck 950m above sea level in the Lake District with my best friend, Caitlin. My cartilage had gone again so I had to awkwardly hobble down the mountain clinging to her. Luckily a nice couple lent me their hiking sticks and gave us a lift to the bus stop.

Things started to get better at university. I spent more of my time rowing than studying, intensely training sometimes twice a day, and yet I felt OK. In fact, I felt great – high on adrenaline for three years – I’d pass out on my bed by midday, but I just thought that was exhaustion from rowing at 6 am. My knees were coping fine and I was doing everything the rest of the squad was.

It wasn’t until 19 that I was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) by a rheumatologist. He gave me the diagnosis quite casually as if it wouldn’t change anything, but actually knowing so many seemingly random aches and pains can now be explained through one condition has been a great help to me mentally. After my whole life of seeing specialists, being injured, and bumping into lampposts, things started to make sense.

During my master’s degree, chronic fatigue and pain-related anxiety and onset-insomnia started to really set in. I’ve been suffering from a knee cartilage injury for 20 weeks now, yet for non-EDS bodies it’s only a 6-week injury. The pain of this, physically and mentally, started to worsen my fatigue and affect my sleep. Simple activities like commuting from Ealing to Central London became too difficult for me to manage on a daily basis. I negotiated with my university to work from home some days and they were able to fund taxis between my house and the tube station. It’s been really hard realizing I’m not going to be able to live a high-paced lifestyle as I am so eager to do. I’m starting to accept fatigue requires management of ‘boom and bust’ cycles, more rest than I’d like, and pacing the week out so my body can cope.

The emotional strain of dealing with chronic fatigue and chronic pain hasn’t been easy. I often feel like a burden to my family, friends, and partner. But as I’m starting to come to terms with the adjustments I need in life, I’m starting to appreciate the support I do have from people that love me.

I couldn’t do this without their emotional understanding, patience with my moaning, and kind offers from my grandparents to pick me up from tube stations when it all feels too much. Ultimately, I’m a stronger and kinder person for dealing with this… everyone has their difficulties in life, and I’m just so lucky to have loved ones around me.

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