After twenty years of pain and repeated medical dead ends, a stranger sent me a message on Instagram. It led to a diagnosis all the doctors had missed
When I was 15, I saw a gynaecologist for the first time. I was there to understand why every month I was in agony, and bleeding so heavily I was scared to leave the house. I was due to have my first ultrasound scan, and in that appointment, I learnt that the scanner doesn't just stay on the outside, gliding over your skin like you've seen on the TV. There's a second part to the scan, and this time it's internal. I sat on the bed, clutching a sheet of paper towel over my body, and watched as the doctor squeezed a sachet of lubricant onto a probe I wanted nowhere near me. Then she said something strange, something I've remembered ever since: 'This must have been designed by a man.'
Maybe it was her attempt at a joke, or a show of solidarity. At the time, I had no idea. In my juvenile naivety, I couldn't comprehend the underlying implication of her words, which is that sometimes, doctors might not care how you feel. Back then, I believed that doctors made you feel better. I believed there was a social contract: you had a problem, you went to the experts, and they gave you a name for what was happening and told you how to make it better. Of course, there are many symptoms and disorders that are dealt with like this, and every day, medicine improves and saves lives.
But this is not the story with chronic pain. And in the 23 years since that first appointment, chronic pain has been the story of my life.
My medical files
Since my adolescence, my body has been a difficult place to live. Alongside the terrible periods — eventually identified as endometriosis — more mysterious, nameless pain appeared and stayed: first in my lower back, in my teens, and then in my elbows and wrists when I was at university, then at some point my knees, my hips and the muscles around my eyes. Frequent headaches began when I was 18; by my mid-20s, they had become raging, terrifying migraines. I am 38 now, and it is rare to experience a day with no pain at all.
The pain gets worse whenever I do anything for very long, and that can be as little as 10 minutes. If I look at my laptop or phone or read a book, my eye muscles begin to ache. When I stand up or walk, the soles of my feet begin to burn, and if I keep going, it will get worse and worse, kicking off a flare-up that can last for weeks or months. This is not the kind of vague ache you get if you overdo it a bit at the gym: this is pain that seeps into every part of your being, infecting every thought and every decision. It is the kind of pain you will design your life around trying to avoid. These days, the pain is so easily triggered, there is very little I can freely do. On a good day, my list of safe activities is very small; on a bad day it doesn't exist at all.
Across my 20s, my body developed other weird problems. My skin frequently went haywire: I was told it was eczema, but there were other, mysterious reactions — for months at a time, I can experience itching all over my body, or flushing on my face after I eat. Once, I had a rash that was so sudden and extensive I was told to go to hospital (they had no idea what was wrong). By my early 30s, my digestion was acting up too: crippling cramps, bloating that made it difficult to move. I had months of bladder pain, with no sign of an infection. I was often exhausted, no matter how much I slept. I had dental problems too: I clench my jaw aggressively at night, which has caused so many cracks in my teeth that I am intimately acquainted with root canal surgery.
After a Pilates class once, when I had been lying on my front on a thin mat, a bruise appeared on my hip bone. I always bruised easily, but this was different — it was huge, an oval mark maybe 8 or 10 inches long, spreading purple and yellow across my stomach. I booked an appointment with my GP, who told me it was a haematoma — a leaking of blood into surrounding tissues when the walls of blood vessels break. Haematomas appear when people have sports injuries, car accidents, blunt force traumas, she said. What had happened to me? A Pilates class, I said. It was odd, she agreed vaguely, and added it to my ever-growing file of medical mysteries. It eventually went away, so while I didn't understand it, I didn't really care. It was low down on my list.
The problem with Western medicine
At this point, any reasonable observer might conclude that there was something universal wrong with my body. By my 30s, I was sure of it. The trouble is, most of Western medicine does not consider the body as a whole, and most doctors are not interested in symptoms that fall outside of their area of expertise. So, for 20 years, I went round and round in maddening circles, visiting hundreds of different specialists to discuss only the symptoms that fell under their expertise. For the muscle pain, I saw physios, osteopaths, chiropractors, rheumatologists, pain experts. For the foot pain: podiatrists and sports medics. For the skin flushing and itching: dermatologists. Bladder pain: urologists. Pelvic pain: gynaecologists. I don't even think that's the full list, but you get the idea.
Once, when seeing a neurologist about my migraines, I tried saying I also had chronic pain in many other places in my body, because I thought that might be relevant. He told me he wasn't a rheumatologist, and so those other symptoms were not to be discussed with him. He explicitly told me not to give him the information that might have revealed what was ruling my body and ruining my life.
Doctors do, however, suggest investigative tests — which of course is helpful if they lead you to an answer. For me, they never did. I had MRI scans on my spine: all fine. I had nerve conduction tests to see if any of the pain was coming from a trapped nerve. It wasn't. Skin biopsies, where they took out a holepunch piece of my skin. 'Just chronic inflammation, but we don't know why,' the dermatologist said, and sent me back to my GP. I had patch tests, where I wore a network of allergen patches on my back for several days. Result? No allergies. I had scans of my feet. Scans of my uterus and bladder. Nerve blocker injections in my head and neck. Blood tests, blood tests, blood tests. Nothing, nothing, nothing. Again and again, no one knew what was wrong with me, which in the medical world means: nothing is wrong with me at all.
Hypermobility is cool
In the background of all this, I knew vaguely that my joints were flexible. I thought of my body's bendiness as a sort of benign party trick, or maybe even something cool. There is an episode of Friends where Phoebe remarks casually that, like the baby in front of her, she can still put her ankle behind her head. Rachel asks her: 'How are you still single?' As an impressionable 13-year-old, learning how to be desirable, I took notes. Being flexible is sexy; being flexible is good. The idea was compounded in the many yoga classes I attended, where I easily twisted my body into special, impressive shapes. But I thought nothing more of it. I was flexible in the same way I had blonde hair: it was factually true, but not really important, and certainly not linked to my symptoms.
Ten years ago, a rheumatologist came tantalisingly close to making the link. I was 28, and after taking a brief inventory of my many years of pain, this male rheumatologist asked me to go behind a curtain, undress down to my underwear and put on the starchy backless gown folded on the bed. I did what he asked and I sat on the bed while he checked my reflexes with his cold metal hammer and touched me with his cold hands, pressing various points and asking me what hurt: all of it. Then he told me to stand up, and to bend over while he stood behind me, to try and put my hands flat on the floor.
I happened to be wearing a thong that day; I hadn't realised the appointment would involve bending over in a backless gown. I remember the moment crisply, even a decade later. It didn't feel predatory — he was as interested in me sexually as he was medically, which was not very interested at all — but there was something distinctively miserable about that moment, even among all the misery I have felt in doctors' rooms. I don't know if he knew I would feel horribly exposed and vulnerable in that position and just didn't care, or if it didn't cross his mind in the first place. Both are damning. A man must have designed this, I remembered the first gynaecologist saying. These people do not care how you feel.
Maybe that's unfair, and I'm sure there are brilliant consultants out there. I'm just saying that, in my twenty-year quest for help, I didn't meet them. I met the ones who were bored by me. They were rarely rude — some of them even shook my hand. They were just never very interested in what I was experiencing or what I had to say. Doctors have rich clinical expertise, of course, but in those appointments, they have known my body for minutes; I have known it for 30 years. You might think that we could collaborate, that I might have knowledge to contribute. But if I ever went off script, trying to add a detail that I felt mattered, they let me know via a curt response or no response at all: this didn't work like that. In my appointments there were never two adults working together, conversing as equals. Instead, we were a patient and a doctor; a commoner and a king.
In that moment with the rheumatologist, as with so many before and after him, I was not a real person in unknowable, unending pain, whose mind was slowly being destroyed. I was just a line in his diary, organised by someone else, in emails where we referred to the doctor by his title, never his first name.
A missed chance
But back to my point: by asking me to bend over in front of him, the doctor was testing the flexibility of my joints. If you can put your hands flat on the floor easily without bending your knees, as I can, that is one piece of evidence that you are hypermobile — in this case, that the spine and hip joints are particularly lax. It is one of nine joints assessed in a diagnostic test called the Beighton Scale; if you score five or above, you are officially classed as hypermobile. I don't know if he bothered to do the whole test, or to write down that I do indeed meet that threshold, but it certainly wasn't something he mentioned to me, or wrote in his subsequent letter to my GP. Instead, he wrote, 'I diagnose this lady with chronic widespread pain'. Even at the time, I thought: I could have fucking told you that.
The appointment with this man was a landmark: a defining moment of pain dismissed, an answer overlooked, and an opportunity lost. It was another 10 years from this appointment until I found out that my hypermobility — which he saw! — not only explained my chronic muscle pain and chronic migraines, but explained all the other symptoms too.
In that intervening decade, my pain worsened, controlling every aspect of my personal and professional life. By this point, I had acquired a dangerous label. If you have a lot of chronic pain in the absence of injury, and multiple other mysterious symptoms, doctors move you into a special room with a sign on the door that says fibromyalgia. Most of the people in this crowded room are women, who all have chronic pain and other 'medically unexplained' symptoms that society has decided not to respect, like fatigue and dizziness. No one understands why these symptoms are happening to this huge number of women and no one cares. I was always hesitant to mention the F-word in appointments, because I could detect the tiny narrowing of the doctor's eyes, the flicker of a change. Ah, okay, their face would say. You are one of those.
You are what you eat
With conventional medicine offering no help, I turned, as many others do, to a common alternative: nutritionists. In the last 15 years or so, with the rise of 'clean eating', there has been an immensely popular cultural idea that health problems can be both caused and resolved by what you eat. This is partly true — what you eat does make a difference to all sorts of symptoms. But my God, seeking help from nutritionists has made me miserable.
I once saw a nutritionist who recommended that, to solve my problems, I should stop consuming four things: gluten, refined sugar, caffeine and alcohol. Imagine meeting up with a friend to celebrate something, but you cannot have any of those four things. What do you order? Already trapped in a horribly uncomfortable body, this well-intended professional was telling me to deny myself the small pleasures that might offer brief respite from an unyielding experience of pain. But I did it, diligently trying my best to cut out all of those four things, for about a year. The symptoms didn't improve.
By this point, I was hooked on the exhausting idea that something I was eating was the problem. I just needed to figure out what it was. For years, I've tried to follow a low-histamine diet, because I read somewhere that an overactive release of histamine in the body can lead to skin itching, flushing and migraines. But it turns out almost all food either contains histamine or stimulates its release in your body. One article said that the act of eating itself triggers histamine realise. A few years into my nutrition-based insanity spiral, I realised there was almost nothing I could eat or drink that someone hadn't told me not to.
It would be hard to pick the rock-bottom moment in my nutritional voyage, except that something so ridiculous happened once that it wipes the floor with any other contenders. It is probably the lowest low point of all of my interactions with health professionals, deeper even than bending over in front of that bored guy in my underwear. It is so ridiculous it is almost funny, except that it is not funny at all.
I had been seeing this nutritionist for a few months, and his initially sensible list of ideas had become increasingly unhinged. He was particularly keen, for example, on coffee enemas, which are exactly what they sound like. The trouble is: no matter how wacky the idea, there will be someone on the internet saying it fixed their symptoms, and when you feel bad enough, I promise you, you consider anything, even that. In this particular appointment, though, this nutritionist tentatively recommended something that I knew immediately I wouldn't try. What did I think, he asked, about drinking my own urine? He told me he drank his own piss every morning, and said something about 'biofeedback', and I found myself in the absurd social situation of not wanting to be rude by saying no. Somehow I declined, and didn't book another appointment with him. He never bothered to follow up.
A turning point
By now, I had a modest public profile as a psychologist. Alongside my health problems, I had progressed in my career as an academic. I had written two books and secured a research fellowship at University of Oxford, which meant I had a following on social media — small by the standards of true influencers, but a platform that meant I could reach people. A few months ago, when my migraines were particularly bad, I realised that I might have learnt some useful information that could benefit others. I chose to write about the chronic migraines only, not all the other symptoms, because it was the only thing that felt legitimate enough to say out loud. Migraine has a name; it is recognised by modern medicine as a genuine problem; there are treatment guidelines I could share. The post had a significant response — many people reaching out to thank me, and to say that they too suffered with migraine. I was glad I wrote it.
Then I had a private message from a stranger that would change my life.
It was from a lady I'll call Jane, in her early 60s. She wrote that her daughter has chronic migraines as part of having a genetic disorder called hypermobile Ehlers Danlos Syndrome (hEDS), and that she had it too. She wondered if it might be worth investigating if I was hypermobile. I had vaguely heard of EDS — I knew it was a disorder characterised by very flexible joints. I decided to reply.
That's funny — I actually am hypermobile, but nowhere near bad enough to have EDS.
Jane replied:
Even if you don't think you have EDS, it might be worth looking into it.
So I did. I googled and I googled, and gradually, I discovered myself. I learnt that, for people who have EDS, their hypermobile joints are a result of faulty connective tissue — faulty collagen, to be precise — which makes it fragile and weak. But connective tissue is not just in your joints, it exists throughout your body — wrapped around your nervous system, in the walls of your blood vessels, integral to your digestive system — so the faulty connective tissue in EDS causes widespread symptoms across multiple bodily systems. It causes muscle pain, too: because hypermobile joints are lax and unstable, the muscles have to grip on for dear life, causing widespread tension. The brain also cannot figure out where your wobbling body is in space (a sense known as 'proprioception'), so your nervous system interprets this as a threat, and repeatedly sends you warning signals. The end result? Chronic widespread pain.
I read the research papers about hEDS. I asked ChatGPT to talk me through the diagnostic criteria. And I couldn't believe it. I stared at the information like I've just pieced together a murder or unearthed an affair. This random sweet lady on Instagram had spotted something that hundreds or professionals, in hundreds of face-to-face appointments, had missed.
I replied to Jane:
I think you're right, I think I might have hEDS too. If I do, I'll never be able to thank you enough.
I couldn't be sure — many of the diagnostic criteria needed clinical expertise that I didn't have — so I booked a private appointment with a rheumatologist who specialised in hypermobility. I had never done this before, because I had no idea my hypermobility was relevant. Soon, I was waiting in her clinic, and waiting quite a while, in fact: the last patient had overrun. But when the doctor finally came out of her office and led me into her room, she touched the back of my arm gently, apologising for the wait. Her touch was unexpected and it melted me, because suddenly I knew: this was the person who was going to help.
Sat opposite her, I poured out my heart and she listened. We were a team, uncovering the mystery together. With every symptom and anecdote, she nodded. Yep, that's hypermobility, she said. Yes, that is too. And that. And that.
The haematoma? Due to weak connective tissue in the walls of my blood capillaries. The teeth grinding? A hypermobile jaw struggling to get comfortable. The root canals? Weak teeth. Skin itching and flushing? Too much histamine released by faulty mast cells, a part of the immune system embedded in connective tissue. Migraines: an unstable neck, and dysfunctional pain signalling. Bloating and cramping? A digestive system in chaos, because the faulty tissue is embedded there, too. Even endometriosis is linked to hypermobility and hEDS, although researchers aren't yet certain why.
Then she examined my body. Again, she asked me to undress to my underwear, but this time it didn't matter. This time I felt safe, like I was with my mother or a friend. Miraculously, when she asked me to touch the floor with my hands, she stood by my side, not behind me. Touching me softly, she looked at my bendy fingers and elbows and flat feet and nodded and nodded again. Then I got dressed and we sat back down and she said it. I have hypermobile Ehlers Danlos Syndrome.
An answer
It is too big, really, to convey what this information means to me. It is the best gift I have ever been given, the most important thing that has ever happened to me. It is the dream that all us 'medically unexplained' patients long for: a single answer that miraculously and logically explains it all, a thousand lose threads tied together in a cohesive, beautiful bow. But I am heartbroken, too: medicine did have the answer all along, it just didn't reach me. It is not a good idea, mentally, to look back over my life and think how things might have been different, or how much less pain I might be in right now, had anyone bothered to join the dots. It is too late now. But sometimes I cannot help it.
I am not naïve about what happens from here. I will have hEDS and its symptoms forever, and as I age, it will get harder. The options about what to do next are muddled and sometimes overwhelming. Some days, I feel like I climbed a mountain to reach the diagnosis, only to turn the corner and see another mountain up ahead. But at least now I am armed with accurate knowledge, and there are management approaches I've not yet tried. At last, I can pursue targeted, evidence-based ideas instead of thrashing around in the dark.
Everything is different now. Even as the symptoms rage on, there has been a version of a conclusion, and it feels like a seismic shift. I will never go back to not knowing. I want to yell through a megaphone to every doctor I've ever seen: all my weird symptoms were legitimate. There is something wrong with my body. I was right.
Rather recklessly, I decided to contact the consultant that I'd seen most recently, to inform him I have hEDS. I had seen this doctor specifically about the foot pain I have experienced for many years, but I had told him about my other pain too. In our appointment, he correctly identified that I met the criteria for hypermobility on the Beighton Scale, but he didn't suggest I might have EDS. The aim of my email wasn't to criticise him, but rather to share information that might be useful if he had future patients with similar, mysterious widespread pain. So, via his assistant, I emailed him to share my diagnosis. I said it carefully, of course, to manage any ego concerns. I used his full title in my email, and I signed off with my first name.
A few hours later, I got a reply from his assistant. She relayed a message from him: 'Tell the patient I'm happy she's had a diagnosis and I wish her the best for the future.' I had to read it a few times, because it was almost too on the nose to be real. Not the lack of acknowledgement of his clinical oversight or the brevity of his message, but the wording he chose. The patient, he wrote. My name is Lucy, I wanted to reply. I have a name.
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For more information about Ehlers Danlos Syndrome, visit EDS Support UK.