-Years of doctors’ appointments & medications-
For years my life revolved around endless A&E dashes, doctors’ appointments and referrals to numerous hospital departments for several different symptoms that no one could make sense of or ever thought to connect. It was confusing and stressful to put it mildly. An overwhelming cycle of medication mounted. I’d take a tablet for one problem and then another to remedy the side effects of the first; in a never winning cycle. My mental health suffered as a result and I ended up with day to day panic attacks and anxiety so bad that I feared leaving my own front door.
-Eureka! A diagnosis…-
I suffer a lot of bruising, along with general aches and pains and it wasn't until I had a massage session one day that the glimmer of a diagnosis began to materialise. The massage therapist listened; she listened to me as a whole. That day was the first time I had heard of Hypermobility Ehlers Danlos Syndrome. My Mum was quick to find a specialist and I was diagnosed that same week.
After years of trying to work it all out I had a diagnosis. Though now I had to accept and get used to the idea I had an 'invisible illness' and what’s more – there was no cure! It meant I was going to have to live differently and make changes to support my health. It felt as though I was being restricted even further and this brought a new set of problems – perhaps I had been better off not knowing.
-Empowering myself to live beyond diagnosis-
Eventually, I came to realise that this was my body, my health, my mind and that I needed to be in control of my life and support myself to live as wholesomely as I could. By changing my mindset and implementing positive changes around diet, exercise, lifestyle and my support network I was able to influence and change my health. No more stomach pain where it hurt to move; no more medication; no more multiple naps in the day; no more missing out on social engagements. Most importantly I started listening – really listening - to my body.
-It was possible to change and feel ‘normal'-
The diagnosis has impact, there’s a lot to take in and understand. Where would I draw that support from? All of this inspired me to take up health coaching to support others in similar situations. To work with them to break away from being just 'their diagnosis' and move forward in a positive way, in a direction of their own choice. With a good balance of support and challenge change can be made. We need to be listened to. We are not just our illness. We are more.