Helping Others Understand Fibro

Fibromyalgia, as described by the NHS in UK, is one of the ‘Top 20 Most Painful Conditions’ to experience as a human. It is up there with Cancer and CPD, however, Fibromyalgia is still a very unknown condition. Doctors have no idea what causes it and therefore cannot treat it and others either haven’t heard of it or don’t really know what it is.

So how do we get the word out there and how can we make Fibromyalgia known and understood by others? Educating others is the only way that our illness will get the proper exposure and medical attention that it deserves. Although Lady Gaga has brought the illness at little more into the public eye we can all do something to help others understand –

* Post occasionally on Social Media about the struggles of Fibro. Although most of us already do this we need to do this in less of a complaining way and more of a informative way to let others understand better, like –
”Did you know that Fibromyalgia is one of the NHS’s top 20 most painful conditions”

* Help others try to relate to your pain, remember it is hard for someone to try to understand how you are feeling when they have never experienced anything similar, like —”Have you ever had the flu where you ache all over and parts of your body that you don’t pay much attention to hurts?” But remind them that when they have the flu or hurt themselves that they know their pain will eventually go away, yet Fibro has now treatment or cure.

* Explain the Spoon Theory too them. (We have another leaflet about the Spoon Theory)

* Christmas Lights—When I read about this it was a great analogy, your nerve pain lights up over your body like Christmas lights

* Broken Bone theory, which is where you refer to someone else’s pain. ”If you seen your friend with a broken arm you could kind of relate to them as at some point in your life you would have hurt your arm. However, how can you relate to me if you have never experienced it”

* We now give out a card for members (for a small donation). The card helps explain Fibromyalgia and can be given to people that may stop you in the street for many reasons including parking in disabled bays, asking if you are ok (maybe cause your on crutches or a wheelchair)

 

* Fibromyalgia still currently comes under the care of Rheumatology. Due to this the charity and website called The Arthritis Association have written –
’In general, your explanation to others about Fibromyalgia should be straight forward and uncomplicated. You may say something like, “Fibromyalgia is a Rheumatic Disorder that causes Muscle tenderness, pain and fatigue.” If the other person doesn’t understand, you might make your explanation simpler such as “Fibromyalgia is like Arthritis in the Muscles.” Of course, this type of explanation is not entirely accurate, but it should be readily understood.’