Living with Hypermobile EDS – A Cinderella Story ✨️

Once upon a time, in a land far, far away, a young woman was watching television and soon discovered that certain ads had a strange knack of p*ssing her off.

That woman is me, FYI. And, since we’re in contemporary times, let’s kibosh the fairytale narrative and discuss these two ads.

The ones in question are as follows:

1) the “Feel” vitamin one with Cheryl Tweedy and her perfect post-baby body (is that look even remotely possible to achieve in the real world, or just in the small city – or photoshop studio – of Celebs-Ville?)

and 2) the intro you get at the cinema, telling you to “sit back and relax”.

Fair warning, the grumbling is about to begin…

Now.

Evidently, these people and sentiments are meant to inspire you or to put you at ease; giving you the mojo to improve your health and appearance, and permission to finally kick up your feet and enjoy chilling out. All I see though, is a challenge. One in which I can’t ever seem to accomplish. Because when you have hEDS, life is never as easy as the ads make it out to be.

For those of you lucky enough to not be in the know, hEDS (AKA, Hypermobile Ehlers-Danlos Syndrome) is an incurable and invisible condition that, at its best, enables cool party tricks (such as inconceivable flexibility) and, at its worst, renders you completely debilitated. The more sophisticated definition from the NHS website is detailed below:

Ehlers-Danlos syndromes (EDS) are a group of rare inherited conditions that affect connective tissue. Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones.

Hypermobile EDS

People with hEDS may have:

Apparently, us flexible zebras (as we’re affectionately deemed) are the “lucky ones”. Out of the 13 EDS subtypes, the hypermobile variety is considered to be “the least severe”. For example, some people who have this condition may only experience mild symptoms and can live a seemingly “normal” life. However, further, along this spectrum, others can dislocate their ankle by simply walking down the stairs and live in a chronic state of pain, dealing with complication after complication, and maintaining a minimal existence with the use of medications and adaptations. So, without trying to sound ungrateful for bearing the “least severe” variety…having hEDS sucks.

Living with this type of Ehlers-Danlos Syndrome every day is already a physical and mental assault course, so my heart truly goes out to those who tackle the other varieties on a day-to-day basis. That being said, I want to be explicit when I say that all pain is valid, and the way it impacts each person is as variable as this condition itself.

I may not be at the worst end of the spectrum, but I’m also not at the best either, and when I look back at the person I was just 5 years ago, it’s like reflecting upon a lost youth. That Sacha faced anything and then some. Nothing would stand in her way. Like a lot of twentysomethings, she was an independent spirit with the world at her feet. Notice how I speak about that Sacha in third-person. Sadly, that is because she is long gone. Instead, two catalysts occurred in March 2019, which would irrevocably change everything. The first being when the initial symtoms began and the second being the last time I’d ever feel remotely normal again.

In an attempt to bypass the long-winded version of this journey, I’ll do my best to be brief. Within months of noticing a pain in my wrists, I ended up with shoulders so tight that I started taking pregabalin and baclofen to relieve the pain and spasm cycle it’d caught itself in. My trapezius muscle was so solid, that I often thought how much the Hulk would be green with envy at the sight of them (greener than usual that is). As I stood in front of the mirror, I also could see that my right arm appeared to hang lower than my left and that it often felt out of place from my shoulder blade. Of course, this was not possible, according to the world’s most ignorant GP, who’d evidently never heard of subluxation (partial dislocation – something us bendy bunch are bestowed by the EDS). Fast forward being pushed from pillar to post for several months, this ridiculous situation eventually spiralled to affect my right arm and hand, causing stiffness, pain and claudication. At this point, I still had no certain answers as to what was happening to me and tried to carry on with life to the best of my abilities. If only I’d known what was going to happen next.

“Wait a minute. How is this a Cinderella story?” I hear you say. “There’s no sexy Prince or anything.” Listen, every story has to have a beginning, middle and end. If I went straight to the end, it wouldn’t resonate much. So do as the infernal cinema ads say and, “sit back and relax” because we’re getting there.

Come May 2020, I’d begun noticing a new addition to the pick ‘n’ mix bag of pain. This time, it was in my hip and lower back. I’d busted my coccyx whilst cleaning a few years prior (I forgot the bed was behind me, alright? Jeez…), so I knew it wasn’t that. The pain was just to the right of my lower back and made a very discomfiting snapping sound every time I straightened up. At first, I thought this was an injury caused by exercise. Despite my challenges, exercising has always been an important aspect of my life, so I tried my best to maintain that (even if that meant using Joe Wicks’ OAP workout…) Anyway, I tried to be sensible and rest for several weeks, hoping that this problem would recover if I took it easy. Patience isn’t something I’m a fan of (#CapricornIssues) and I was desperate to start moving again. Even with the trials of my arm and shoulder (of which I now knew was caused by Thoracic Outlet Syndrome) being too still resulted in an unwanted stiffness. As odd as it is, being sedentary actually makes things worse. So, as soon as I felt more able, I asked my friend to accompany me for a long walk. Oh, how good it felt to be amongst the great outdoors again! I’m so glad I took advantage of those scenic strolls because they wouldn’t be possible for much longer.

By summer 2021, I was told that my hEDS and SIJ dysfunction (the swine responsible for the aforementioned pain and a complication caused by the EDS) meant I’d never be able to walk at an incline without physically paying for it. By winter 2021, I was barely able to go out without being driven and chaperoned by my friends. By early February 2022, I could hardly sit and eat a meal without excruciating pain. By March 2022, I had, had enough of the meds that barely touched the sides, the straps that barely held my SIJ in place, the insomnia caused by the chronic pain and the depression that consumed my mind. Even though I’d been told that there was erosion in my right hip and that my tendons looked like they were ribbon twirling, the only intervention I’d had were two unsuccessful jabs, medication and shrugged shoulders. You can imagine how it felt to be in a place where even eating was a harrowing experience. If my right arm was stiff and painful, using it was impossible, and since my lower half wasn’t (and still isn’t) ever comfortable to bend, it’s not as though I could just sit down and use the other one. At this point, I didn’t feel like half a human. I felt like a walking corpse. And, I’ll be honest, I wanted to die.

Apologies for the morbidity, but after 3+ years of this confusing experience, faking happiness isn’t something I (or anyone, for that matter) owe the world. Maybe it’s a British thing? Like, when someone asks you how you are and we all smile, nod and say, “Good. You?” Ugh, what kind of lines have society fed us? And here’s the thing, in a world where being unhappy is scrutinised, we all live in fear of expressing it. Sure, no one likes a Debbie Downer, but no one wants to know that their friends are fearfully bottling up their emotions, either. We’re all meant to help each other. One thing I can safely say about the challenges I’ve faced – even though I feel like I’ve been engulfed by the mouth of hell – is that I’ve been fortunate enough to have some good friends, who always do their utmost to pull me back.

Their job is by no means over, though. Maybe “job” is the wrong word. My friends are hardly on the payroll for “Keeping Sacha from Giving Up LTD”. What I mean by that is, my journey isn’t over. I still have no real solutions. In some respects, I still don’t believe I have all the answers, either. Yes, I have an operation lined up to remove a rogue rib in my neck and a portion of my first rib to help ease the arterial compression, which is causing the Thoracic Outlet Syndrome. Indeed, I have meds that dial the pain down in my hip and back enough for me to…cope? Saying that, I only had to sit and watch the new Dr Strange movie the other day, and ended up crying myself to sleep because the pain was so bad. I spent the next day feeling like I’d been hit by a bus and, basically, rode a snake straight back down to square one on life’s gameboard.

If I’m being honest here, I’m not sure how many times I can keep falling down and then find the strength to get back up again.

I want to bring the dramatics to a close for a sec and finally explain why I’ve written this lengthy article, as well as discuss the Cinderella link you’ve all been kind enough to hang on for (I may able to resist British pleasantries, but self-deprecating humour is something I’ve mastered to a fine art. That British-ism is going to take a while to change).

Okay, so, firstly and most importantly, this month marks EDS Awareness and Mental Health Awareness. Both are complicated and misunderstood experiences, and I felt that by being candid about my personal journey with both might be a helpful nod to that. Both of these unelenting conditions can’t be seen with the naked eye, but their effects are both psychologically and physiologically damaging. Please bear in mind that invisible isn’t the same as imaginary. This shit is real. It’s also hard to see an end to. All I can say is that support and intervention are the biggest helps out there. Some of which I have linked at the bottom of this article (keep scrollin‘, scrollin‘, scrollin‘ – if you get the musical link, write it in the comments! Gotta lighten the load a titch).

And, secondly, what’s Cinderella got to do with it? Okay, so some people use the Spoon Theory to explain their EDS (a great tool, also linked at the bottom of this piece) but I want to expand on this by likening it to Cinderella’s story. Think about it – she was on a time limit. Once the clock struck 12, the horse-drawn carriage would turn back into a pumpkin, her flowing dress would return to rags and her coachmen would become animals again. Cinderella truly took the “faking it” notion to new heights. It was nothing more than a ruse, so that she could receive a glimpse into the world she dreamed to be a part of. And understandably so. She was a good person dealt a rough blow. After years of being trapped in a grotty room, living a miserable existence, why shouldn’t she feel like a princess for a night? Even if it doesn’t last long, it’s always nice to feel happy.

They really should make one of those memes, using characters from Cinderella to represent this condition. But, since patience is not my forte and I don’t know how to make a witty enough meme, I’ve made an analogy instead. So here goes:

  • Cinders is the individual who’s sadly drawn the short straw and has a life dictated by the EDS
  • The Wicked Stepmother represents the matriarchal EDS
  • The Ugly Stepsisters symbolise its unbearable complications
  • The cute little Mice are like the meds and adaptations, keeping Cinders going
  • The Fairy Godmother is that magical day or moment where things feel more bearable and you brave something you enjoy
  • And the Prince, well, I guess him and the glass slipper represents…hope?

So many of us who live with this condition feel immensely sad, lost and lonely, not knowing how to map out our lives or relationships. But this Prince – this dedicated Prince who searches far and wide for the lady whose foot this glass slipper belongs to – he has to be hope. Hope that there is a future where, even with limitations, happiness can still be a part of it.

Perhaps now it’s clear why harmless adverts trigger me so much. To my able-bodied counterparts, they are perfectly innocuous. But to me, they’re a constant reminder of the vicious cycle I find myself in and that who I once was is a distant memory. Everyone’s experience of this condition has its crossovers and differences, but there is one common denominator – frustration. There is also, however, one other overlap – support.

Some are lucky enough to have their partners or family by their side, others have friends or understanding colleagues, or perhaps the virtual world is where they feel free to reach out: using forums or online communities to ask questions, offer help and meet others in the same boat from all over the world. So whilst hEDS sucks and can make the world seem like a taunting purgatory, it also has a community of love, support and hope.

Without question, this condition and its mental and physical ripples have impacted my life immensely – now and forever. I’ve had to change every facet of it and learn to accept the situation I now find myself stuck in. And whilst I can’t say for sure, I’m hoping I won’t give up. I’ve been close and no doubt will again. But with these weapons in my arsenal, I will do my best to stay strong, and I hope others in the same position can, too.

It might be a bit rich coming from me, but if you ever feel like the EDS gets too much and you’re worried about expressing it to your loved ones, please, talk to others who know EXACTLY how it feels. There is truth in the phrase, “a problem shared is a problem halved.”

Happily ever afters may not be a guarantee, but if we stick together, stay open and help one another as best we can, there is always hope for a better ever after. 🦓

Helpful Links: Facebook – EDS forum + online support group. EDS society, Spoon Theory, The mighty community, Mental Health Foundation

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