Our journeys with Fibromyalgia are often long and very lonely.
It is difficult it seems for our loved ones, friends and colleagues to contemplate ever feeling so awful and wracked with pain when, in most cases you look surprisingly well. Doctors, if you get a sympathetic one, are busy and how do you pour your heart out in just the few minutes assigned to each patient? Finding your Fibromyalgia support network isn’t always easy.
At times, I think it is the loneliness that I find the hardest to deal with. The holding inside of the things that scare me and my sheer frustrations of having a condition that nobody, including some medical professionals have no comprehension of. Add to that the feelings of guilt at not always being able to function the same as everybody else and it all makes for some pretty grim days.
So just where do those suffering with Fibromyalgia and other chronic conditions get their support if not from those closest to us?
A simple search on google reveals plenty of groups and communities but do they really offer the kind of Fibromyalgia support you are looking for? I know that for me when I was first diagnosed, I looked to the internet for some guidance and desperate for somebody that just understood.
Sadly in those days, I found plenty of sites but the reality was that there seemed to be some huge pity party going on and that really wasn’t me. Don’t get me wrong, I can do feeling sorry for myself with the best of them but truth is, I have Fibromyalgia but it was never going to have me. So I plodded on alone for pretty much 25 years with no real, tangible support. I have an amazing husband who constantly tells me to rest and who takes care of me very well but after all these years, he still just doesn’t get it but he loves me anyway.
When I decided to put my experience to good use and start the blog, I was determined that I was going to offer positive Fibromyalgia support and advice to my fellow sufferers. I wanted to empower and show that despite us having a condition that can take over our bodies from time to time, that we could still function and with some determination lead a pretty normal life.
Well now, having had a good look around, it seems things have moved on in the past 28 years.
There are groups of Fibro Warriors who use their personal knowledge of the condition to motivate and support others in the same situation. I have come across Facebook groups where the love contained on the page is almost tangible. It is uplifting seeing people sharing their experiences of Fibromyalgia with the one constant of supporting one another and offering advice to those who are unsure or confused about their condition.
I am passionate about getting the Fibro message out there, but more importantly, I want to stand alongside fellow sufferers as they navigate their Fibromyalgia journey. I have 28 years of experience with this condition and can take the guess work away from you when you are looking for answers.
Facebook allows us to come together to support one another and I have both a public page but probably more importantly I have the safe sanctuary of a closed group. The support fellow sufferers can give one another is invaluable, it is very hard for our family and friends to really comprehend what we deal with daily. You would be more than welcome to either the page or group.