My advocacy work is variable across many avenues from social media marketing health awareness campaigns to taking part on panel discussions. I have a degree in glass and ceramics because I wanted to set up an art’s retreat for people that led busy lives could go and take part in varying activities. The retreat was to also include outdoor activities, cooking masterclasses etc from a team of us… not just me! Sadly, health has it’s ways of skewing things sideways and it didn’t happen.
After a few years spent working within hotel and leisure I built up many personal and interpersonal skills as well as how to run such a business. All part of my research for that retreat. However, my body couldn’t handle the work anymore and without a diagnosis, despite chasing one for 10 years, I was left on disability and very depressed. Newly married and in a dark hole. Well educated and unemployable.
I got help a few years later through pain management and counselling services and ended up back at university to get a Business Masters. I literally threw myself into it as a desperate measure to make a career for myself and passed with distinction, which was only possible if your dissertation passed with A grade. That’s how desperate I was to carve a career.
It still wasn’t enough, I was too old and disabled and companies wouldn’t entertain me so I decided to set up business instead and even entered ‘Blue-Print Awards’ and got through to the local final. I didn’t win but the whole experience really helped with confidence building. Then I was thrown back into despair as my health spiralled again. Back on the road seeking that diagnosis and back on disability.
After 20 years of chasing, now age 39, and being told nothing was wrong I was diagnosed with a rare genetic condition - ehlers danlos, with a side of fibromyalgia and all of my illnesses being attributed to the EDS. I had a business Masters and was suffering with really poor mobility and severe pain. What could I do?
I ended up after a short while becoming a fibro forum volunteer, then admin then I set up my own support group, which then turned into an online community to serve everybody because getting to meetings wasn’t an option for us all. Even me sometimes!
In a nutshell that group just kept expanding as I used my business skill-sets, natural insight, creative abilities, to nurture what I was building, It is true, and our story is in our FibroFlutters About Us pages that the network I run happened purely by accident as a result of creating a communications avenue for members.
The website is organic and grows as time moves on. Yes, there is only me working on the website, which is why expansion is slow. However, you can read in one of my latest reports about how social media has helped us to attain a fairly good centric position within the healthcare environment. It can be found on the website
There are a team of us that co-work FibroFlutters local group.
Wego convinced me that external advocacy was the way forward, I just needed the confidence and nerve to do it. Now I am advocating for patients, health, research and pharma to whichever capacity the roles require. Speaking, panels, focus groups, surveys, etc.
Now, when I read all that… and there’s loads not written here I can see how much I have done. I am always being told off for not seeing my true value, but I did have help along the way so no, it wasn’t just about me and my passion to strive.
I have already written a novel, LOL I say embarrassingly, hope you’re still awake
Wishing you all wellness
Carole / CEO fibroflutters.com Co-F FibroFlutters