Believing my own symptoms: harder than you'd think

Believing that ones own symptoms are real is a common issue for many people with hidden disabilities who have had a long road to diagnoses, especially where there has been a lot of disbelief from both medical professionals and others along the route.

I've been diagnosed for over 15 years now, and having volunteered with the Hypermobility Syndromes Association for most of that time and had some excellent guidance from them, I'm confident in my understanding of my hypermobile body. I know my symptoms, and I have a pretty good handle on what helps me - and what makes me worse.

Unsurprisingly, after a busy-but-paced day at home on Christmas eve, followed by dinner with Mum and 2 siblings, then a Christmas day spent half with a family of 7, and half with a family of 5, (with a nap in between and an evening in bed) on boxing day I was completely flattened by fatigue.

And yet....

As I lay/sat in bed on boxing day, with every part of me tired - every muscle feeling sluggish and slow to respond, and my brain going slow, and coherent speech working for a sentence - maybe two before running out, I thought maybe I was just making it up.

I mean: I couldn't see the fatigue, I couldn't measure it. I had no way of knowing, for sure, that I wasn't just making excuses to have a lazy day.

But logically I knew it was real: so I asked my brother (staying with me for Christmas) to help me move something outside. Despite the nagging thought that I could -and should - do it myself because I 'wasn't really that bad' and it was a task I usually do on my own.

I had to give a few brief explanations while watching little brother do the work - but they were done mostly with hand gestures. Plus I walked about 4 steps.

Despite this, I didn't make it back to my bed in the spare room (which is literally right next to the back door) without needing an 'emergency fold' to manage my postural tachycardia syndrome (PoTS) and avoid collapsing and get enough blood back to my brain. 

This was oddly reassuring - validating. I had genuinely needed the help I'd asked for, and my symptoms really did justify my plans to stay in bed and do as little as possible except wiggle breaks during TV ads, and eating food.

Then I curled up and slept. 

Yes. The fatigue was real. And I knew it was real. But believing it was real and allowing myself to use the support I needed was still really hard.

So anyone else in a similar 'don't believe their own body' boat, I hear you! The struggle is real.