In 2012, after 2 years of experiencing a gradual decline in my health, I was diagnosed with Fibromyalgia. It was a diagnosis I was expecting as I just knew from my symptoms that Fibromyalgia would be the cause but that didn’t make the diagnosis any easier to accept. I felt a small sense of relief as I now had a name for what I was experiencing and I wasn’t going mad, making it up or imagining it. But that small moment of relief quickly turned into shell shock. How do you accept being told you will be in severe pain every day for the rest of your life and there is no cure? I still haven’t accepted it; I don’t think I ever will. I don’t want to either as I refuse to let this illness define who I am.
I lost my job in 2016 because of Fibromyalgia. I enjoyed my job and had worked there for 16 years so this was one of the most difficult experiences of my life and became a very dark time for me. At the same time my friends began to slowly distance themselves and drift away because I wasn’t getting better. You soon find out people only hang around for so long before they lose interest and become fed up. People don’t understand the magnitude of a chronic lifelong illness unless it’s something they have experience of. I was alone, I had no friends with Fibromyalgia or other chronic illness and no family members either so there was nobody to understand or talk to.
I decided to seek out support and advice online and joined a few Fibromyalgia Facebook groups. There were no local support groups available for me to join or meet with so online groups were my only option. I then decided to start my own Facebook page “Orkney Fibromyalgia Sufferer.”
In the beginning I did it for myself and it was a place for me to share my thoughts and feelings without my Facebook friends becoming bored or fed up with my constant sharing of Fibromyalgia related content but what I really wanted was for them to understand what I was going through. So I started a blog called “Orkney Fibromyalgia Sufferer” and shared my entries and I received positive feedback from friends and strangers alike.
Writing helped me greatly – just getting my feelings out on paper made me feel lighter. It was like therapy to me and to find out it helped others too gave me a real sense of purpose at a time when I felt I had none. Whilst writing my blog I realised I was also passionate about others suffering from invisible conditions so I created a Facebook Group called “Invisible Illnesses Orkney” and the group has grown slowly but I’m happy with that.
We are a close-knit group of people who share similar experiences and prejudices and it is a safe space for us all to communicate with each other without judgment. I’m particularly passionate about creating a support network in Orkney, not only for Fibromyalgia sufferers but for others with invisible illnesses too. We are a small island community with little access to services and there is nothing available specifically for Fibromyalgia. I have met so many wonderful people through the network I have created and it has cultivated in me a real need to continue building on that and become an advocate for Fibromyalgia and other invisible conditions in Orkney.
Recently I was fortunate to be introduced to Sharon Turnbull and More than Fibro. We are both keen to work together to increase the support and services available to Fibromyalgia sufferers in Orkney and the Scottish Islands. I am excited for the future as I know that, with Sharon’s support and guidance, we can make a real change in Scotland’s remote island communities.
Fibromyalgia, also called fibromyalgia syndrome (FMS), is a long-term condition that causes pain all over the body.
NHS
Archived articles:
Research Into Fibromyalgia Earns Award for Stefanie Doebl
Fibromyalgia, ME/CFS Orkney Support Group
