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.
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.
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.
So tell me a bit about you, Rhi. What do you do, and what disabilities do you have?
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!
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?
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.
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.
You mention feeling ecstatic when you got diagnosed, but what was the overall emotional impact like for you?
I was gaslit, ignored, and laughed at by my GPs. All because I was ‘too young’ to have chronic pain.
As great as it was getting my diagnosis, I was still dealing with medical trauma. Within a week, I’d gone from ecstatic and feeling empowered to horrifically depressed. It was affirming to have my diagnosis, but then I had to deal with the emotions I’d been suppressing for eleven years.
Using your experience, why do you think it may be unrealistic to expect everyone to have a diagnosis for a medical condition?
Getting a diagnosis should be a right – but it’s not. In this current system, diagnosis is a privilege. Your financial and social standing play a significant factor in whether you get diagnosed, which can have such a terrible impact on a person. Gender, sexuality, race, neurodivergence, even diagnoses you may already have can impact your ability to be diagnosed – especially if you have a mental illness.
It all comes down to time, money and resources. I wish I could say my story is rare, but most chronically ill and disabled friends I have had very similar experiences.
What do you think could change to make getting diagnosed with a medical condition a better experience?
Something that would have the most significant impact on getting a diagnosis would be acceptance and removal of the stigma around labels. Labels are just an easy way in identifying needs and making sure they’re met. If we viewed them as such rather than a stigma, getting diagnosed and getting referrals would be easier.
Another important one would be to have fewer judgmental medical professionals. We all have easy access to information. I’m not saying I know better than my doctor, but if I go to a doctors appointment with some ideas of where my symptoms may lead, they judge me. Almost like they think I want to be diagnosed with something because I think it might be fun.
There will be people reading at the start of their diagnosis journey. Do you have any advice you’d like to give them?
Keep a record of everything. Note your symptoms and when they flare up, take notes before and after every appointment with your GP or medical professional, and know your rights. Don’t be afraid to ask a loved one to come with you or contact a charity that can provide an advocate. [Editor’s note: The Prince’s Trust has a comprehensive list of supporting charities based in the UK, click here to open the link]
I wish I could say it won’t be a fight to get the diagnosis you need, but the harsh truth is that it will be for most of us.
If you think you know what diagnosis you’re likely to get, join support groups for it online. Don’t be afraid to research because even if it takes years to get the official diagnosis, you’ll have the toolbox needed to care for your body and condition in the meantime.
You can follow Rhi on Twitter their handle is @Rhisilient or you can follow this link to their profile.
How is Bua Helping?
Bua works hard to ensure that everyone feels validated; one way it does this is to not perpetuate the medical model by asking for proof of disability from its workers. Instead, Bua asks whether a worker identifies as disabled or neurodivergent. This is to eliminate stigma by removing labels whilst also empowering staff.
Bua offers disability and neurodiversity inclusion services for organisations seeking to change. Get in touch to book yours.
About the author
Lauren is a freelance writer from Falmouth. After graduating from university, she took a keen interest in writing about disability, so her story and others like it could be told with passion and conviction.