Medical Trauma during a Diagnosis Journey: An Interview with Rhi Saunders.

"As someone who was born with a disability and subsequently received my diagnosis when I was about 18 months old, I was mercifully unaware of my diagnosis journey. For as long as I can remember, I have always been disabled. What’s more, the validity of my disability, from a medical stance at least, has never been questioned. Honestly, I’m a pretty cookie-cutter case from a doctor’s perspective: one disability, no complications, just one massive tick box.

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It’s not so simple for a lot of people, though. When it comes to being diagnosed later on in life, whether that’s as a young person or an adult, the experience is fraught with complications. Any disability that doesn’t seem to impact the person outwardly can go undiagnosed for years. Neurodiversity and hidden disabilities seem to slip under the radar, excused as misbehaviour, laziness or, in the case of Rhi, even clumsiness.

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I first met Rhi at university whilst she was in the middle of their diagnosis journey. I didn’t know what she was going through then; I just knew it had a terrible impact on their mental health. So, I asked them some questions to better understand their diagnosis journey.

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Thanks for helping me out, Rhi. So, standard start, who are you, Rhi? What do you do, and what disabilities do you have?

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'I’m a 25-year-old queer, chronically ill and disabled entity with a real mixed bag of interests. I currently work two jobs as a Personal Assistant for an amazing autistic person, and the other as the social director of a board game studio my partner and I set up during lockdown!

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To answer your question about my disabilities: after a horrifically long diagnosis journey, I have finally been diagnosed with: Hypermobility Spectrum Disorder (HSD), widespread chronic pain, a dyslexia and dyspraxia combo, Polycystic Ovary Syndrome (PCOS) and C-PTSD.'

That’s a lot of hidden disabilities to try and deal with. When did you notice something was wrong?

'Looking back at it now, I should have known something was wrong at a much earlier age! But for me, it wasn’t until I was 16 that I started to investigate my health further. I’d always been the clumsy kid, the one who was covered in bruises and had zero coordination. I was bendy and never broke a bone, even when I was sure I should have, but I did dislocate joints and sprain a lot more than most.'

When would you say your diagnosis journey properly started?

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'16. By then, all of my above symptoms persisted; I’d even gained new ones. I was always in pain. Like, 24/7 pain. My spine felt like it had been trampled on and led to many trips to A&E. Most of the time, I just got sent home for rest and pain relief. It never helped. Any pain related to joints was put down to growing pains, which my GP ignored. I eventually had x-rays and went to see a rheumatologist. After that, I was finally referred to a physiotherapist. I got discharged pretty quickly.

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From there, the journey was really chaotic for me and very traumatic. I just remember the pain getting worse.

By the time I was 18, a doctor had managed to get me seen by a chiropractor who told me I likely had permanent damage to my spine and that I just had to “deal” with being in pain for the rest of my life. When I was 23, I managed to secure the diagnosis of “widespread chronic pain” from my GP, which is an empty diagnosis that led nowhere.

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That same year I requested my medical history and was horrified to discover that I’d been diagnosed with hypermobility when I was 14 and not been told. This broke me because not one doctor thought to mention it in the ten years I’d spent looking for answers. If I’d had that diagnosis sooner, it could have saved me literal years of pain.'

How did gaining your diagnosis of Hypermobility Syndrome help you?

'Hypermobility is the kind of disorder that requires careful upkeep and understanding of one’s body, which is essential to know. At the same time, loads of my other symptoms clicked. I’d suffered from dizziness, fatigue, poor gut health, bladder issues, migraines and was generally susceptible to getting sick.

I threw myself into research, and I realised that my hypermobility and the other symptoms I was having could be signs of Ehler’s Danlos Syndrome (EDS). I went back to my GP and pushed for a rheumatologist appointment, and I was diagnosed with Hypermobility Spectrum Disorder.

To say I was ecstatic to finally have answers for my health problems was an understatement.'"