Sounds ridiculous doesn’t it?
For years and years I’ve fought, ignored and ultimately dismissed the fact that I’m poorly. Even struggles that I’ve spoken about openly such as secondary infertility and post natal depression have been overlooked (by me) when making plans or considering the future.
I refused to give in to aches and pains. I made fun out of my rubbish iimmune system, about how unreliable I am. When I really wanted to cry and sleep – I ploughed on and papered over the cracks with caffeine, sugar, make up and jokes.
I just assumed that everyone was in pain
The truth is, I AM always poorly and although you might not be able to see it, I’m in pain EVERY day. I feel tired whenever I’m awake and when I get sick, it takes me a long time to recover. I’ve visited the doctors to talk about 38252836283 different symptoms over the years, many of which I’ve dropped in at the end of an appointment because I’ve had them for so long that I thought perhaps they were normal.
Then something happened. My Mum was diagnosed with Elhers Danlos Syndrome. Elhers Danlos Syndromes (EDS) are a group of rare inherited conditions that affect connective tissue.
When she described her symptoms (there are many and sufferers can experience them in different ways) I could relate to alot. But still I didn’t feel like I could possibly have a ‘syndrome’, a ‘disability’. I couldn’t see that EDS might affect me.
Then my sister was also diagnosed with Ehlers Danlos Syndrome. The condition is hereditary and when Jen described her experiences, I realised that she could easily be describing mine.
Perhaps those weird allergic reactions I get on my legs, aren’t allergic reactions at all. The migraines, the all over pain, the dizziness, the clicking joints, the IBS, the fact that it takes forever for wounds to heal, even the bumps on my feet – could all be down to EDS.
When you accept that you’re ill, you remove the pressure to act like everything’s ok.
It turns out that the party trick I used to do, where I’d do the splits or put my feet behind my head – wasn’t big or clever.
Maybe the dislocated hip I suffered during labour – wasn’t just bad luck? The fallen metatarsals weren’t coincidence? The IBS symptoms aren’t down to diet?
Perhaps I’m not lazy or forgetful, perhaps I really do suffer fatigue and brain fog. Perhaps it’s understandable that I’ve been battling depression!
I’m managing my own and other people’s expectations.
I’m still waiting for a proper diagnosis but I feel hopeful. You see for years I thought that the way I felt was normal – it isn’t as though we can jump into someone else’s body and see how they feel. It seems silly, but I just assumed that everyone was in pain. And aside from the pain, I’ve been investigated for dozens of conditions over the years, only to receive the ‘good news’ that tests have come back negative. Good news, but news that made me feel more and more of a hypochondriac, more and more bonkers, more and more of a failure.
So I’m bizarrely relieved. Even though an EDS diagnosis is quite serious and it’s a condition that’s going to get worse and not better – it would explain 35 years of symptoms.
Almost as soon as I accepted that a diagnosis was likely, I began to feel better!
When you accept that you’re ill, you remove the pressure to act like everything’s ok.
Instead of pushing through pain, I’m giving myself time to recover. Instead of trying and failing to do it all, I’m managing mine and other people’s expectations. Instead of making excuses, I’m being honest and I no longer feel guilty for saying no. I’m prioritising self care in a way that I’ve never done before and I feel really good!
I’ll keep you updated as to how the investigation goes as well as how we manage the symptoms going forward.
In the meantime, if you’d like more information, visit Elhers-Danlos.org
Love Rachel
❤️
