I’ve lived with Fibromyalgia (knowingly) for over 4 years now. It’s only in the last 4 weeks that I have come to realise how awkward and dismissive I am of the condition, and the differing struggles it brings me on the daily.
I realised this following a conversation with a colleague of mine about why I was working later than everyone else on that particular Wednesday. I explained in brief my flexible working agreement due to my health. Said colleague looked to me with confusion and intrigue and went on to ask what my health issues were. I shared that I have fibromyalgia, what it is and how it can effect me (as short and brief as is possible).
I felt awkward and self conscious when he offered recognition and shock that I came to work every day and got on with my job, now being privy to this little known fact about me. As is my standard reaction to this type of feedback, I brushed it off and tried to steer the conversation back to him, but he wouldn’t let it go.
My colleague was aware at that point I was intending to complete the 3 peaks challenge on the 21st September, and am training to conquer my dream goal of climbing Kilimanjaro in January 2017. We then got to talking (again in brief) about the struggles those challenges are already bringing, will bring and him questioning whether I will be fundraising for a Fibro related charity. At this point I felt REALLY awkward because, yes that has crossed my mind, I feel I could and should raise money for a fibro related charity but;
1- I have never accessed one so have no personal connection to one.
2- Fibro is incredibly unique to each individual that suffers with it. I worry that sharing the fact that I live with it, and am looking to undertake such a physically demanding challenge will add to some peoples assumption that it is a made up thing. Or worse, further demotivate those who don’t feel they would be able to attempt what I am looking to.
My colleague essentially poo poo’d my thoughts and feelings on this. He told me I should be proud of what I’m doing and shouldn’t be afraid to share my story. He went on to tell me about a radio interview he had heard that morning. The interview was with a 2016 competing Paralympian, who had been inspired by Ellie Simmonds in 2012 and won Bronze at Rio. On that thought he left me and I went back to work.
Later that evening I found myself in (what I refer to as) a fibrofunk. Clues in the title but basically feeling down and out because I have fibro and its a bit shit. I couldn’t really understand why it had crept up on me, as I felt alright physically and hadn’t struggled much cognitively that day.
My go to comforts of watching Friends, contact with my loved ones and a good feed weren’t working so I reflected on my day and pinpointed where the funk came from. It was from talking about it with my colleague earlier that day! Kicking myself, I thought how ridiculous. 4 years in and I STILL struggle to talk and accept my condition. This needs to change.
My colleague was right, I should share and I should be proud of what I am doing and trying alongside my condition. In his current role he is employed to share his lived experience with aim to inspire and challenge others to try new things and change their circumstances. I see first hand the positive impact he and others have with this approach. Why am I not taking from that and doing the same?
Well my friends I put the feelers out on Facebook that night and here we are. 4 weeks, 1 birthday, 1 failed attempt at 3 peaks challenge and 2 pretty vicious flare ups later… fibro-blogger.com agogo!
I can not change my diagnosis but I can change how I think, feel and talk about it. Hopefully I’ll learn how to tell a cool story or two in the process too!