arcey Kelly and Sam March were caught up in young love when Darcey’s Ehlers Danlos Syndrome (EDS) started to tear them apart. The condition attacked every area of Darcey’s life, from her work to her passions to her relationships.
Prior to her diagnosis, Darcey lived life on full tilt: As well as being the life and soul of the party, her activities ranged from fight scenes for films, martial arts, and circus skills. She was the kind of person to juggle straight A’s with three jobs and still go out at the weekend. When Sam met her in 2014, it took almost nothing for him to fall head over heels in love.
Although Darcey was first diagnosed at the age of 15, it wasn’t immediately obvious how devastating and crippling the effects of EDS would become, and for the first few years she refused to slow her pace or let anything get in the way of living her life to the full. In fact she took it so much in her stride, and EDS is often such an invisible condition, that Sam had very little understanding of the constant attack her body was under.
Darcey had always spent a more-than-average amount of time in hospital, although this seemed at the time largely to have been down to her extreme pastimes and prior injuries…but more and more frequent/severe dislocations of her joints, seizures and heart problems meant parties were called off, nights out were cancelled, and date-nights ending at the hospital became a regular occurrence. Try as you may to live life, EDS isn’t something you escape or ignore.
As Darcey began to understand the gravity of her diagnosis, Sam – young, blissfully ignorant, somewhat selfish and in denial – continued to plan their life together as if a normal life was possible: envisioning their 20s with week-nights at the gym together and weekends on the dance floor at Fabric, their 30s at home with kids, and so on... Darcey began to feel like a burden, or a disappointment – keeping the pain to herself, until things would come out in passionate arguments that neither knew how to deal with. Chronic pain, grief, depression, and the string of mental challenges that comes with a diagnosis like EDS affect the personalities of those suffering. The guilt affected both partners in strange and adverse ways, as they shut off or lashed out at each other…soon every part of the relationship started to fall apart.
This isn’t a love story, at least not one with a romantic ending. Their relationship was one of the many casualties of her condition and Darcey saw no hope for a normal life together. She knew she would never have children and would potentially die young, she couldn’t bear to put Sam through what she saw her mother go through when her father passed away five years prior. After a messy and painful break up, Sam moved to Switzerland and Darcey carried on juggling her university studies with endless hospital trips, relying on the support of her mother, siblings and friends to get her through.
It was from her hospital bed, a year after the break-up and the day after Rare Diseases Day, that Darcey spoke out about her struggle. Having recently re-added each other on Facebook, Sam saw a post that finally hammered in just what Darcey had been going through. Here’s what she said:
Yesterday was rare diseases day and in an effort to raise awareness I decided to tell a little bit about my diagnosis and how it affects me.
I was originally diagnosed with Ehlers Danlos Syndrome when I was 15, and recently that diagnosis was upgraded to the more severe form of the illness - Vascular EDS, as well as a neurological condition called Chiari Malformation.
When you hear a diagnosis like that, it really does take your breath away. Reading about the symptoms, in particular the high risk of death from heart problems, truly took some time to rationalise. The moment you get a diagnosis like this, you do go through grief. You mourn the loss of a life you dreamed you could have. You cry over the future being mapped out for you; a life of hospitals and IV drips and pain medication that leaves you almost zombified. And when you realise that it's a rare disease, you resent the lack of funding and research with every fibre of your being.
This is why it is so important to donate to rare disease charities. People like me view our diagnosis as a death sentence; as something that will be scrawled upon a coroner's report in a short space of time. This isn't simply due to the symptoms, but because there is no funding to research a cure. You lose the fight before it ever began because the sheer hopelessness overwhelms you. Hope is so integral to overcoming an illness such as this.
In the moments my entire body is rigid and convulsing in seizures, when my joints are locking out of place and my muscles are screaming in protest for relief- those are the moments where hope is needed most. Unfortunately, the hope I once had in abundance trickles away the moment I feel the horrendous potency of muscle relaxants and painkillers drip my veins. Those drugs are a cold reminder of the research our illness lacks; they're a sombre veil placed over our symptoms in an attempt to mask what the true problem is. Physical pain ebbs away as the numbing concoctions flood my system, but the emotional turmoil merely increases. It's those moments that are the worst. It's a pure vulnerability I would not wish upon anyone - moments where I place my hope and faith in a doctor's hands and pray he can help me. Sometimes he can, sometimes he can't. Sometimes I'm forced to undergo a general anaesthetic- knowing I'll be unable to resist as he twists and pulls the joints back into place. Sometimes I'll wake up from the operation and scream in pain, forcing the joints out again.
Sometimes I'll reach the end of my tether and shove something like my jaw back into place because I simply cannot stand it any longer. My mum will stand by helplessly watching as I writhe in agony and beg for relief. She'll be the one alerting doctors as I stop breathing, the one holding my hand as I cry and beg for something to give respite.
Illnesses like these are not just pain; they're a poison stripping your humanity and person away until you're a shell of a human. I wish I could lie and pretend I fight in every one of those moments- I wish I could act like the people you read in those inspiring gofundme stories. Instead, the truth is that I have given up more times than I can count.
It is only someone as incredible as my mother who pulls me through, or the doctors who stroke my hair as I weep, or the nurses who make me eat and coax me out of the darkness. It is my flatmates making me laugh and giving me flowers and holding me as we wait for the ambulance. It is regular people who keep me going - making me feel again and showing compassion, despite not seeing the physical symptoms. It's someone who reads and learns what this illness is like and silently understands my pain. Knowing there is someone that cares, truly cares, means the absolute world to me.
One of the worst feelings in the world is to go through this agony, only to hear a stranger utter the derisive words: 'well you don't look sick'. Rare illnesses are so often invisible, but that does not mean they are not there. Just because they don't have enormous campaigns and fundraising and celebrities supporting the cause doesn't mean they don't matter. Please take your time - even 5 minutes, to read about this illness and consider supporting these smaller charities. Though it may seem like your support is just a drop in the ocean, I assure you as someone who suffers from it, it truly means the world.
The relationship is long-over, but there is still a love there, and in Darcey’s post Sam saw another side than the brave face that had always been her go-to. Appalled at how little he’d understood her condition during their time together, he decided it was time to do what he could to raise awareness and support Darcey’s charity of choice.
With little idea where to start, he reached out to the most supportive people in his life: his family. His aunt Eloise, who had recently had treatment for cancer and was no stranger to hard fights, suggested the 100km London to Brighton challengeto raise awareness and funds for Darcey’s little known condition. Sam’s cousin Tai was quick to jump on board.
The threesome have all begun their training – a 24+ hour walk presents different challenges to each of them: Eloise is fresh out of hospital after surgery and Sam, despite loving the gym, hasn’t walked/run more than 5km since having the cartilage removed from his knee in his teens …but they’ve attacked their training and fundraising plans, keeping Darcey, and those like her, constantly at the front of their minds.
Beyond the physical effort, a huge challenge is a deeply ingrained reluctance to ask friends, acquaintances and strangers for donations…a process that many of you know can be awkward and uncomfortable for both parties. But to those suffering from EDS, the efforts to raise funds and awareness will be far more significant than the blisters on the team’s feet – and ultimately what matters is doing what they can to give a little support and solidarity to people whose daily suffering is so often misunderstood, misdiagnosed or ignored.