What A diagnosis meant to me – #EDSAwarenessMonth

Hello hello! It has been quite some time since I wrote a blog for you all. My practice has been rather busy, I’ve been studying too, so all blogging ideas had to go on a back burner for a while, so I could pace myself with my current workload.

As you may or may not be aware, this month is EDS awareness month. This blog idea has been something that’s 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. The reason being, 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, in those individuals (like myself), where you look perfectly fine but you are suffering. Because of all this, I wanted to address, what a diagnosis meant for me.

10 year delay

Unfortunately, there are quite a lot of individuals out there that have some very complex health conditions and they 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 too.

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 wrong.

It took a chance appointment with the podiatrist that started my own research into what was happening 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! 29 years of age and I was unable to live a ‘normal’ life. Going from being hugely active and teaching ice skating 7 days a week to spending my days in nothing but 4 walls, hit me unbelievably hard.

This chance appointment was what paved the way to finding out what was wrong with me. She had me walk around in the corridor, had me 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. This is what I did and she immediately took one look at the way my legs were positioned and said ‘Hmmm, 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’

‘Ummm, 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 for a diagnosis

Well, after that appointment, I hit up Dr.Google. Don’t roll your eyes at me, we’ve all been there lol. I googled my symptoms and the common theme that was popping up was either joint hypermobility syndrome (now Hypermobility Spectrum Disorder (HSD)) 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 story’s of other peoples journeys sounded just like me. I reached out to them and they offer support and advice in terms of how to get diagnosed, how I could learn more about my condition, and that I could learn how to manage the symptoms better than I currently was. WOW.

Whilst this was happening, I was diagnosed by my GP with fibromyalgia and ME, both of which, those of us with hypermobility syndromes are often misdiagnosed with. 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 anaemic, I had gut issues, heart palpitations, 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 is the only way I could function. I would have tears streaming down my face whilst 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 is what then 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 specialising in pain! Woohooo! The doc was great, he referred me to see the hypermobility clinical 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 too which were linked. These issues that come about because of the hEDS are known as comorbidities. For me, my comorbidities come in the form of gut issues, PoTs, lactose intolerance, chronic pain, acute pain due to micro and macro traumas, brain fog, chronic fatigue amongst others. These I still have to manage these daily, even though I am 7 years post diagnosis now. They won’t magically disappear, however, I can manage them much better than I was doing!

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, 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 myself, along with my very awesome and supportive husband. We make it work. I cannot run my practice like a conventional 9-5, I can run it how it suits me and my health though.

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 to 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 learnt 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, how they can self manage their physical and mental health. The solution focused approach not only helps my clients, it helps me everyday 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. The wise words of Jo – 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.

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, how did this blog help you understand them a little better? I would love to know your thoughts in the comments below.

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

2 thoughts on “What A diagnosis meant to me – #EDSAwarenessMonth”

  1. Crying reading this and I’m 50 years old!!!! Had problems with hip pain since I was 13 followed by elbows ‘locking’ in my late teens, up to today where I have arthritis in both wrists, constant pain in my right shoulder and now my right knee and ankle ‘get stuck’ Scans and xrays are always ‘fine’ Pain management clinic actually told me hypermobility does not cause pain and ‘my issues’ are due to fibromyalgia?? and current physio is telling me I have to keep moving and doing things??!! I also have IBS, some weird random scars and have always been ‘dizzy’ I am a full time carer for my Mom who is housebound so I only get carer’s allowance and Income support but I’m considering paying to go private because like you I need some confirmation here – but at the same time I’m fearful that I’ll be sent on my merry way again and told ‘I’m fine’ I am glad I came across this post though – this is my story, thank you xx

  2. I’m another psychotherapist who was diagnosed later in life with EDS. I’m really astounded sometimes at the arrogance of other practitioners who would argue we are just hunting for a diagnosis. If somebody in the medical field suspects that a patient may have diabetes, they don’t stop there and say a diagnosis isn’t important. They would say “well of course not, I can treat it better and we need to know what it is.” Why would this same mentality not apply to hypermobility disorders? They treat it (wrongly) in the same way they view mental health disorders, as not having the same level of validity, importance or treatability.

    It took me a while to get my own diagnosis and some of the support I needed, because I had stopped seeking support from doctors unless I had no choice. I was also used to pain. They didn’t even really know I was struggling as much as I was because I’d given up trying. It’s part of my daily existence in a way that isn’t normal for others. I’ve learned to get on with it, or I had convinced myself (thanks to their usual responses) that I was being overly sensitive. If nothing else, I’m so thankful for my diagnosis because it confirmed that I was right, and my pain was valid. It doesn’t take it all away, but it helps knowing why, and helps me work around it more effectively where I can.

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