"Mis-diagnosis for over 20 years"

Back in March 2015, I was signed off work due to exhaustion. I could barely sleep and felt stressed, anxious and scared. After many years of similar symptoms, for most part, I now stayed in my bedroom. It felt like my life had ground to a halt.

In the lead up to being signed off, my then GP, just like all the GPs I’d seen thus far, did a few blood tests and then told me you're perfectly healthy. I persisted with appointments and was then signed off work. My GP then insisted you're depressed Yes I feel depressed I responded but that's because I feel exhausted all the time and don't know why. They responded You feel exhausted because you're depressed. I didn't find their attitude helpful and continued to do my own research.

A friend with an autoimmune condition recommended some further blood tests to request. A slightly elevated anti-CCP level was detected and I confirmed my dad had Rheumatoid Arthritis (another autoimmune condition). But despite this and my symptoms, my then GP refused to refer me to Rheumatology. I've reviewed all your notes and taken on board that you don't think depression is the root cause here.  They told me. Yes I responded, feeling at last we were making some progress. They continued So I've come to the conclusion that you have Chronic Fatigue Syndrome. My face fell but that's a symptom not a condition I responded. They smiled sweetly Oh no it's recognised as a condition and we don't know what causes it. I left the GP surgery in floods of tears feeling hopeless.

Thankfully I had enough determination to try again and requested to see a new GP. Feeling very apprehensive, this time I lucked out and for the first time, had a GP who not only listened but took on board what I thought about my health.

They treated me with dignity and respect, as someone on the same level. And they respected my knowledge in health research (I have an MSc in Public Health Research). Without question he referred me to Rheumatology where following a physical assessment, I was diagnosed with hypermobile joints and handed a leaflet. I already knew I had this but decided to dig deeper for associated conditions. On further discussion with my GP, we agreed that Joint Hypermobility Syndrome (JHS) was likely the issue, of which depression and chronic fatigue are symptoms.

I didn’t want to take pain killers on a regular basis (as recommended), so researched possible holistic treatments, discussed this with my GP and 18 month on, am fitter than I’ve ever been! It’s taken over 20 years of poor health and a lot of persistence to get to where I am now. I only hope that JHS will very soon be getting a lot more attention to improve diagnosis rates, and subsequent holistic treatment will be promoted. For me there’s been a huge improvement in both physical and emotional life quality.