What Getting an Ehlers-Danlos Syndrome Diagnosis Meant to Me

As you may or may not be aware, this is Ehlers-Danlos Syndrome Awareness Month. This blog idea has been rattling around my brain for a while. I thought to coincide with the awareness month, I would try and get this written for you, dear reader, and myself.  I hear a lot of talk amongst the medical and health professionals about people pushing for a diagnosis. This is being portrayed as a negative thing to do, particularly for individuals like myself who look perfectly fine but are struggling. Because of all this, I wanted to address what a diagnosis meant for me.

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

A 10-year delay

Unfortunately, many individuals have very complex health conditions that do not fit the “usual” criteria, and on average, it takes us roughly 10 years to get diagnosed. As you can imagine, taking 10 years to get diagnosed with something, or just trying to find answers for what is going on with your body for that length of time, can not only leave you physically broken but also mentally broken.

This is exactly what happened to me. After years of medical appointments, blood tests, investigations, cortisone injections into certain joints, dislocations, subluxations, nerve pain, chronic pain, constant injuries, physiotherapy, hydrotherapy, trying different types of medications and so on, I found my answer. But it took a hell of a lot to get there…

I had been pushed from pillar to post, different doctors looking at the injury sites I had and not looking at my medical history. If at any point someone had taken a step back and looked at me as a whole, they would have spotted what was happening.

It took a chance appointment with the podiatrist that started my own research into what was going on with me. I was really struggling to walk at this point and was relying more and more on crutches, walking sticks and wheelchairs to get about. I was 29 years of age and I was unable to live a “normal” life. Going from being hugely active and teaching ice skating seven days a week to spending my days in nothing but four walls hit me unbelievably hard.

This chance appointment paved the way to finding out what was going on with me. She had me walk around in the corridor, sit down and stand up on one leg at a time to balance, and finally, she asked me to sit on the couch and pop my legs up. She immediately took one look at the way my legs were positioned and said, “Hmm, you are really hypermobile, huh?”

“Sorry?” I replied.

“Yeah, you are really hypermobile. Look at the way your legs and feet have relaxed; did you know that isn’t normal?”

I think in that moment my head exploded! I was sitting upright, legs straight out in front of me and my feet were laying completely flat on the outside of them. So my toes were pointing outwards at 90 degrees.

“No!” I said, “I thought it was normal. I’ve always been double-jointed.”

“It is more than just being double-jointed. You need to ask for a referral to see rheumatology, they can diagnose you properly,” she explained.

My head exploded again…

The pursuit of a diagnosis

After that appointment, I hit up Dr. Google. Don’t roll your eyes at me, we’ve all been there. The common theme that was popping up was either joint hypermobility syndrome (now hypermobility spectrum disorder) or Ehlers-Danlos syndrome type 3 or hypermobility type (now hypermobile Ehlers-Danlos syndrome).

I discovered the Hypermobility Syndromes Association website, and this started to really speak to me. I was reading about the different syndromes and it was like I was reading about me! The signs and symptoms, the stories of other people’s journeys sounded just like me. I reached out to them and they offered support and advice in terms of how to get diagnosed, how I could learn more about my condition, and how I could learn to manage the symptoms. Wow!

While this was happening, I was diagnosed by my GP with fibromyalgia and ME, common misdiagnoses for those of us with hypermobility syndromes. I knew this wasn’t the right fit for me. I didn’t just have pain and fatigue, my shoulders and hips would dislocate or sublux (partially dislocate), I could barely walk, I didn’t heal properly, I had a vitamin D deficiency, I was on and off anemic, I had gut issues, heart palpitations and dizziness. Every day, I was in pain; sometimes I would crash completely for weeks at a time and I couldn’t get out of bed. If I wasn’t working, I was asleep; that was the only way I could function. I would have tears streaming down my face while trying to drive home from the ice rink. The pain in my feet, hips and knees was unbearable. I couldn’t keep doing this to myself much longer.

Eventually, I broke. Physically and mentally. I had to stop coaching. I gave into my body. This broke me mentally. The job of my dreams, the thing I had worked towards most of my life was gone. Now what?

My diagnosis

After much pushing to get a referral from my GP to see rheumatology for answers, I was finally sent. I was also referred to a pain clinic in Stamford which was very useful. The pain clinic had a psychologist, physiotherapist and a doctor specializing in pain! Woohoo! The doc was great, he referred me to see the hypermobility clinic in London and I met the lovely Dr. Kazkaz. She agreed that what was going on with me was genetic and that I should see a geneticist too. Both Dr. Kazkaz and the genetics doc in Cambridge said I had hypermobile Ehlers-Danlos syndrome (hEDS) and postural orthostatic tachycardia syndrome (POTS). Hallelujah! An answer that made sense!

Along with this hEDS diagnosis, I had a lot of other symptoms going on which were linked. These issues that come about because of the hEDS are known as comorbidities. My comorbidities come in the form of gut issues, POTS, lactose intolerance, chronic pain, acute pain due to micro and macro traumas, brain fog, and chronic fatigue amongst others. I still have to manage these daily, even though I am seven years post-diagnosis now. They won’t magically disappear, however, I can manage them much better now!

What a diagnosis meant to me

A diagnosis meant answers. It meant I could learn to manage my symptoms. It meant that what I was experiencing wasn’t “all in my head.” It meant getting power back over myself and my symptoms. I felt heard. I felt understood. I felt justified for feeling so low because it was real.

I was disbelieved a lot during my journey by medical professionals and others. You still cannot physically “see” my symptoms, my disabilities, my pain, my fatigue and I look completely fine. I may even seem like I am completely together and perfectly healthy, but I can assure you, I am not.

What I am is happy. I am loved, I am me and this is who I am. I am not my hEDS or POTS, they are part of me. Yes, I need to pace/self-manage my symptoms, along with my very awesome and supportive husband. We make it work. I cannot run my practice like a conventional 9-5, but I can run it how it suits me and my health.

A diagnosis was empowerment. Having the knowledge and answers enabled me to learn and understand how I could live a “new normal.” Yes, my life would be different than before, I accept that now. I grieved for a life I lost; I went through different types of therapy to help me get my head around all of this. Now I know what works. I’ve been through that pain and have come out the other side.

I retrained with CPHT in Peterborough, the neuroscience I learned from them, about how the brain works, why we suffer in the way that we do and how solution-focused hypnotherapy could help me was what really kick-started my positive mental health. With the help of my wonderful friend and colleague, independent occupational therapist Jo Southall and the resources from the HMSA Charity, all of this combined still enables me to live a happy and fulfilling life.

I now help my clients with their grief, acceptance, and how they can self-manage their physical and mental health. The solution-focused approach not only helps my clients, it helps me every day too! Through this approach and through Jo and the HMSA, I have created a whole toolkit of things that help me to manage my wonky health. Jo shared these wise words: “You can be in tired, in pain and still be happy.” It is true. You can learn how to manage and balance yourself better in order to live a happier life.

In my experience, it takes patience, practice and lots of pacing. It takes understanding about your brain and your body in order to move forward positively with your life. If you are reading this and you have only just started your journey of discovery, just know, it can get better!

I hope you have found this blog useful. It wasn’t written for sympathy but for understanding. You never truly know what someone else is going through, so always be kind.

Let me know about your journey to diagnosis, was it difficult too? If you do not have any complex health conditions, did this blog help you understand them a little better?

Kim Clayden – Solution Focused Psychotherapist & Clinical Hypnotherapist
HPD, DSFH, MNCH (Reg), CNHC (Reg), AfSFH (Reg)