
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.
Reblogged this on FibroFlutters is a support group for people with Fibromyalgia in Sunderland that offers friendship, support & advice in NE UK. and commented:
Wonderful blog and you’re right beth’s FB page is fantastic and full of caring support I hope you don’t mind me re-blogging your positive post to help others to see they are not alone with their #fibro #invisibleillness
It all helps us to ‘shout it loud’ and raise awareness 🙂 xx
Morning, no I don’t mind at all. As you say all awareness is good. Glad you enjoyed the post xx
That is so great to hear there are positive groups and forums out there now! I’m the same in the sense that support to me is being understood and supported, not people talking at each other about how their lives suck. I’m glad you started the blog to give people the kind of support that is desperately needed!!! Xxx
Thank you so much for your comment Kelly, it is much appreciated. For sure, when you suffer with a chronic condition it is hard to see the light at the end of the tunnel sometimes but I truly believe that with a little determination, we can live our lives with positivity.
Hello , I’m so happy to find this blog! I’m looking forward to getting all the advice and meeting new people. I’m currently trying to find my happiness and health journey from woman that have had this way longer than I. I just sent my request to join you private Facebook group , my Facebook account is in no way spammy but I’m not sure if it’s public or not? I know some of my post I’ve put as public but others where only friend’s and I think their friends can see?? I’m hoping that what I do have public is good enough for you to let me join. Also if it’s not public , can I put it public just enough time for you to look over my page? I only ask this to protect my Facebook account. If not I understand and maybe put my page as more public. Please let me know. Thanks , Jessica Agee ( Jess N Dan Agee- FB name )
Hi Jessica, many thanks for your comment and I am happy to have you here and also in our Facebook group. I hope that you find the information here useful and supportive in your Fibromyalgia journey.