Why It Took 43 Years for Doctors to Diagnose Me With Ehlers-Danlos Syndrome

I have known for years that I have hypermobility and Ehlers-Danlos syndrome (EDS) — ever since I fell down an internet rabbit hole in search of an answer to why my body is in pain and keeps fighting itself. I found the answers to a lot of my health questions but needed to go to a doctor to show a professional what I was seeing instead of treating each new “thing” as an individual condition.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I have various autoimmune diseases and fibromyalgia. These are the only things a doctor has seen when I’ve complained of a new symptom, and these are the conditions they “blame” for my symptoms. Not one doctor has taken the time to see how big the picture is and join all the dots.

Before I turned 10, I would come home from school and go straight to bed because I was exhausted. I was taken to the doctor with pain in my joints — only to be told time and time again that it was just “growing pains.” I would twist and sprain my joints too easily while walking or getting out of the car. I was constantly told I was clumsy and ought to have better control of my limbs. How can anyone pull their shoulder and hip joints out while sleeping? 

Waking in abject agony is no fun, especially when sleep is hard to reach due to the chronic pain. Bruised, silky soft skin was, and still is, my normal skin, resulting in a lack of wrinkles (Perhaps a blessing of this condition is that I look younger than I am!) 

I was an excellent gymnast — a contortionist clown who entertained friends by twisting into positions they couldn’t. At 43, I am still “bendy” and able to do the splits, albeit painfully.

I became a dancer, yet this took its toll. My joints hurt so much. I was hospitalized because of the pain in my knees. For years, my blood tests came back negative for rheumatoid arthritis. I was told “It’s just a sprain, so rest to heal.” Then I was sent away — in pain — with no real answers, starting to question my own sanity. My feet didn’t look like mine because of the damage done by these so-called “sprains.”

During my pregnancies, I was given crutches and a maternity support belt at 12 weeks due to the high levels of pain I was experiencing. As my pregnancy progressed, I was unable to climb stairs and had to have my feet lifted onto the steps from behind to keep my baby and me upright. It was beyond scary, and with each pregnancy, these symptoms worsened. The split symphysis has never healed like I was told it would.

I have had just about every brace and support ever made for twists and sprains. My blood pressure has always been low, which doctors saw as a “good” thing… but it’s hard when you live with it! Many other medical procedures that I have had have all been linked to my EDS too. 

My years of untold struggling in silence has got to stop. The embarrassment I used to feel is gone. I am no longer ashamed. My body is not as it “should” be, and that’s OK — if only I was believed. It takes just one doctor to listen. It takes one doctor to see how the dots join together — just one doctor to care enough to tell me I am no longer alone in my fight with my own body.

I moved from England to Wales in 2020. I struggled to get to see a GP, but when I did, I went in prepared. I had noted all the medical struggles I faced, from the timer I was a child to my last GP visit in England. I explained that I was sick of fighting and just needed someone to listen and help me connect the dots. I showed her all my points on the Beighton scale, including the EDS sign of bending my thumbs to touch my wrist. I was referred to various professionals for further testing for a more specific diagnosis.

Fast-forward six months, and I got an appointment letter back from the rheumatologist… or so I thought. The letter said the practice does not treat EDS, so they would not be seeing me. To say I was deflated was an understatement. I went back to the GP and insisted I needed to see the rheumatologist for the swelling in my ligaments and tendons. I made an appointment, had blood work done, and was medically gaslighted by the rheumatologist at my appointment. 

I came away from the appointment in tears. My swelling was obvious, but my blood work was “unremarkable,” resulting in no further action being taken. I already told the rheumatologist that my blood would show no results, but he wanted to see for himself. And yes, after the umpteenth blood test for rheumatoid arthritis, it came back clear. I am still awaiting a follow-up appointment from the rheumatology clinic.

In the meantime, I was given an appointment for the podiatrist. I had had podiatrist appointments in England and was awaiting an appointment with a surgeon up until the pandemic hit, and we moved to Wales. I thought this podiatrist appointment would be to catch up and continue to treat my ankles. I arrived at the appointment in my wheelchair — walking and standing is far too painful. I had a pedicure, so the podiatrist didn’t have to look at my unsightly trotters.

I entered the room expecting a fight on my hands and thought I would have to explain myself once again, but I was shocked by the words that came out of the podiatrist’s mouth.

Finally, after years of pain and struggle, I was recommended to be fitted for a brace to keep my symphysis together and my hips in place. I was prescribed two braces — one for each ankle — to stop my ankles from spraining constantly. I cried — not in despair and disappointment as I had before but in relief.

Finally, someone listened to me. My hypermobility was being addressed!

The podiatrist said I had been diagnosed with hypermobility by my GP, and his job was to measure for the braces and fit them when they arrived. The sense of relief I felt when I came away from that appointment was huge. It had taken 43 years before my pain from my hypermobility was taken seriously.

I still need to see a rheumatologist again, but I have also had a private appointment for a geneticist to diagnose which type of EDS I have. My father and my paternal grandmother had symptoms of vascular EDS, but this came to light too late for them. Both have now passed, and I am determined not to become another statistic.

I will have my EDS test soon and will be spending money to do so because waiting for the NHS is no longer an option. It has taken too long to get this far, and the pain has robbed me of many years already.

I refuse to let my pain and misdiagnosis take anything else from me. I am taking a proactive approach to my EDS diagnosis because I have a voice, and I need to live — not just exist.

If you can be anything in this world, be kind, especially to yourself when you’re searching for a diagnosis.