Well, That Escalated Quickly: My Unexpected Journey to an hEDS Diagnosis

I’m running a bit behind on this instalment of my ongoing series about life as a neurodivergent, chronically ill female—emphasis on “a bit behind.”

Photo by Imani Bahati on Unsplash

Diary of a Chronically Ill Neurodivergent Female: Week Twelve

Yes, I know—I’m a tad late with this post. But in my defence, I’ve been caught up in the clutches of what I thought was a particularly nasty six-week (so far) fibromyalgia flare-up. Turns out, it wasn’t just the usual chronic chaos.

The pain is currently so bad that I have been mostly bed bound or using my crutches when I am up and about.

In the midst of this delightful flare-up, I finally decided—well, more like my body decided for me—to book an osteopathy appointment. If you follow me on Instagram, you might’ve seen the post-flare, post-appointment misery I shared—full melodramatic breakdown included. While at said appointment the osteopath pointed out that I met the criteria for hypermobility on the Beighton score. As I was talking to her about my fibromyalgia symptoms (and other conditions), plus the fact that I was born with severe bilateral hip dysplasia (fancy talk for both hips were dislocated). To the point that I had 7 operations on my right hip which included it being pinned. It became clear that there was something else going on and she suggested that I saw a rheumatologist (again).

I'm very fortunate that my husband’s work health insurance covers me so the following week I had an appointment to see a rheumatologist. So off I toddled (more like limped) to see a Consultant Rheumatologist, who took one look at me—crutches in hand, pain etched all over my face while handing him a ridiculously long list of symptoms—and declared that it was glaringly obvious I have Ehlers-Danlos s-Syndrome (hypermobile or hEDS, to be precise). He seemed positively gobsmacked that nobody had picked up on all my “red flags” (his words, not mine) before.

I had heard of hEDS but had never considered that I have it as I am not super bendy or able to do contortionist party tricks.

Apparently, that’s a common misconception. Sure, I’m hypermobile, but not in the party-trick sense. More in the “my joints pop in and out like dodgy IKEA drawers” sense. I am hypermobile, hence the hip issues as a child. My ankles also go in and out of place frequently, apparently this is called ‘subluxation ‘. I have constant unwavering pain in my hands that never disappears even when the general flare up does. This is because I have joint instability which means the ligaments are weak and the joints aren't ‘quite in’ place. Strangely, I feel like my head is too heavy for my body, like I am one of those bobble head figurines. This is the one triggering pain due to neck instability (weak ligaments that hold the head up), that spreads to overall pain in the entire body. This is the one that means it hurts too much to sit up, let alone stand up.

So yes, it turns out I meet the diagnostic criteria for hEDS. Who knew? (Apparently lots of people, just not the ones diagnosing me until now.) There are 13 different types of EDS, but 90% of diagnosed individuals have the hypermobile variety. EDS is a genetic connective tissue disorder, so I’ve had it since birth, whereas fibromyalgia is considered an acquired condition. I am not downplaying fibromyalgia in any way as it is a serious and debilitating condition. Fun fact—fibromyalgia is often a misdiagnosis for those of us with EDS, thanks to the similar symptoms.

EDS itself is classified as rare, cropping up in around 1 in 5,000 people, with women outnumbering men at an 8:1 ratio.

And because my body never does things by halves, the rheumatologist also gave me preliminary diagnoses for dysautonomia and Mast Cell Activation Syndrome (MCAS). Dysautonomia is basically when your autonomic nervous system throws a tantrum—think low blood pressure, dizziness and fainting, migraines, and the inability to regulate your body temperature like a normal human. MCAS, meanwhile, is your immune system being dramatic. Mine behaves as if I’ve got the flu 24/7—aching muscles, constant headaches, bone-crushing fatigue—despite no actual infection. It’s like being gaslit by your own body.

So where do I go from here? Well, I’m now looking at yet another incurable disease. Hooray! But there’s a glimmer of hope. I’m starting on new medication this week that should help manage the pain, and I’ll be doing physiotherapy to strengthen my ligaments and stabilise my joints. The downside is that my health insurance doesn’t cover ongoing therapy for EDS since it’s a chronic condition, so we’re covering the costs ourselves. This puts a bit of a limit on how often I can go, which is frustrating, but it’s better than nothing.

You might wonder why I’m banging on about private health insurance when I live in the UK. Truth is, I’ve spent 20 years asking for help, only to be dismissed by various medical professionals.

The NHS is amazing when it comes to emergencies and more “tangible” conditions like cancer, but it’s not set up to handle complex chronic conditions in a holistic way. Cue structural sexism, gaslighting, and the breakdown of care into tiny specialisms that leave the bigger picture out of sight. But that’s a rant for another day (and another blog post).

So here I am, in the middle of a nasty flare-up, newly diagnosed, in the final stages of writing up my PhD thesis, and running my fledgling business from the comfort of my bed. Yes, this post is a little late, but it exists!

And if you take nothing else from my ramble, let it be this—it’s perfectly acceptable to ask for accommodations and do things differently. Sometimes “different” is the only way we can keep moving forward, crutches and all.