The EDS Chronicles: Losing trust in professionals (1/2)

Hello Blooms,

I have felt a great sense of hesitation whenever I think about writing a blog post about the topic I shall be discussing today with you all. Yet at this point whenever I feel hesitant to talk about how I feel, I just go ahead and do it. I’m sick of hiding behind my fear of upsetting people by expressing how I feel. No more.

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Recently I had a scan of my brain and cervical spine (vertebrae in your neck) due to intense neck pain and persistent migraines, and after a long wait my consultant Rheumatologist sent a letter outlining the findings – normal, they said. My initial reaction was ‘thank goodness everything’s okay’, but I’ve lived with chronic pain for as long as I can remember and have found that an explanation of what’s causing the issue is easier to manage than being left in the dark wondering why you’re feeling this way. In essence bittersweet.

However, after turning the page I discovered the letter they had sent to my GP, which said otherwise: ‘loss of lordosis, muscle spasm and bulging of C4/C5 disc‘ (loss of natural curve causing pressure discs in my neck).

This isn’t what I was told and quite frankly I am deeply disappointed as yet again I feel like there has been a lack of transparency and I fail to feel like I can trust my doctor. How am I supposed to seek appropriate treatment?

Over the years, my experience with professionals has been extremely varied. It’s either a ‘walk’ in the park, or you’re left wanting to pull your hair out and throw it at them.

Most recently I finished my course of isotretinoin (read more) and my experience with the dermatology team was fantastic, however my latest experience with physiotherapy has been an absolute let down, and what feels like a load of hope and optimism was based on fake promises and unprofessionalism. After trying my utmost best to attain an appointment in an environment which is suitable for my PoTS/EDS comorbidity, ie the gym and not the pool, I have officially given up; I’ve reached my wit’s end. Even a couple of appointments to show me how to safely manoeuvre and build strength was too much to ask.

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We are NOT invisible, why aren’t we properly accommodated? Why do so many of us have to act like our own doctor because they aren’t able to access healthcare or find professionals willing to listen? I am NOT going to relent to their negligent behaviour towards my health. They tell us we shouldn’t google things but what the bloody hell do you expect us to do when we aren’t receiving adequate treatment?!

A few weeks ago my carer and I attended a conference about hypermobility and related conditions. A fabulous speaker – a physiotherapist from UCLH discussed how there needs to be more understanding and multi-disciplinary discussion and education to ensure a patient is properly supported and doesn’t unnecessarily deteriorate, and to finish the conference she played a video from a young woman who had experienced the same treatment that so many of us with EDS have:

Dismissal, distrust, carelessness, deprival of appropriate resources, lack of accountability.

Highly indicative of the general response from medical professionals when it’s used as a case study when talking about common themes within the treatment of uncommon conditions.

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This got me thinking of all the times I had encountered such malpractice, and in doing so I realised how much of the pain and upset I still hold inside. It leaves a mark, clearly. Not just emotionally, but physically. I shouldn’t be in a wheelchair because my PoTS, hip dysplasia and EDS was misdiagnosed and palmed off as fucking excuses for years. Bitches had me feeling like I was going crazy, as deep down…I knew something just didn’t feel okay, but they were treating me like a typical hyper-emotional teenage GIRL who just wanted attention so was totally overreacting and wasting their oh so precious time. It was this internal conflict of complete opposites and me in the middle trying to keep my head above water.

“Growing pains”

“We generally find people who want to get better, do get better”

“Slept funny”

  • Scoliosis
  • Ehlers Danlos syndrome
  • Hip dysplasia
  • Juvenile spondylitis

“Hormones”

  • PTSD
  • Self-harm
  • Eating disorders
  • Anxiety
  • Depression

“Wouldn’t have been able to stand the pain”

  • Perforated appendix
  • Peritonitis

Like many spoonies out there, I’ve experienced medical negligence and having to contend with unprofessional professionals. People with chronic illness know their bodies better than anyone. I knew my spine felt like it was warped, twisting – and yet professionals disregarded and overlooked my concerns. It’s an extremely lonely place to be when the people who are supposed to help you, make you feel this way.

In the next part, I shall discuss ways to maintain accountability – and how I plan to document my own journey.

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3 thoughts on “The EDS Chronicles: Losing trust in professionals (1/2)

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