How to Explain Fibromyalgia to Others
Explaining What Fibromyalgia Is
Once you tell people of your fibro diagnosis, you will find though many people have heard of it, they have no idea what it is.
I say this: “Fibromyalgia is defined as a disorder characterized by widespread pain, which causes many symptoms like extreme fatigue, sleep issues, memory loss and even affects the mood. It is essentially a very painful, exhausting, joy-killing disease, for which there is no cure and little can be done to treat it.”
Explain how fibro differs from other conditions — for example, polymyalgia vs fibromyalgia — and try your best to explain fibro in terms of how it impacts you.
How Fibromyalgia Affects the Body
I say this: “Researchers believe fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals. So my body feels extreme pain, even though I have done nothing to injure or hurt myself, but the pain felt is debilitating and real.”
Good and Bad Days of Fibromyalgia
People do not seem to understand there are good days and bad days. The uncertainty of not knowing what each day will bring wears on us deep down.
I say this: “I have days where it is less painful to move — perhaps I rested the day before and ate properly and a small miracle occurred. It is not horrible all the time.
But it is unpredictably horrible. Happy occasions and celebrations become one more thing you must get through or manage. Spontaneity vanishes as you must plan ahead for everything.
I have to plan to do things on a day when I wake up and the pain level is in check, so I think I can handle all that is required. Other people take the ability to do all of that, with no planning or weighing their health that morning, completely for granted. I no longer have that luxury.”
I know that what I do on a good day, will probably come back to bite me the next.
I say this when people ask why I’m fine one day and can barely move the next: “Often when I tackle a day as if I don’t have fibro, I will hurt badly the next day and may be so exhausted I will struggle to get through the following day, or two, or three.
That one good day can be one that makes me regret my time of joy. Essentially, often I am punished for enjoying the good days.”
Fibromyalgia, Negativity and Depression
I tell people depression is a natural part of having fibro. Being in extreme pain on a regular basis, and feeling punished for doing the simplest things in life, brings about an associated response. If you pay for having fun and being happy with pain and suffering, eventually you come to anticipate the negative before it even arrives.
So it affects the way you experience the good days a well. This affects your outlook on life and the future, whether you want it to or not.
I have finally reached a point in my life where I will not hide the fact I have fibromyalgia out of fear of how others will react. What others think is not my problem; it is theirs and is a reflection on their character, not mine.
I back up what I tell people with facts, refer them to legitimate sources, and answer their questions honestly. That is all any of us can do and I believe the more we do so, the greater public awareness there will be.