Someone once asked me to describe what fibromyalgia feels like. Well, not just one person, but I began thinking about how to explain it when the first person asked. Over time, my description has morphed a bit, but I have found one description that people seem to understand the most.
There are a lot of different ways fibromyalgia impacts people — we might have the same diagnosis, but everyone’s journey, symptoms and experiences are different. I have told people about the “spoon theory” as well as other descriptions. This one, however, seems to work the best for me.
When people ask me now about my fibromyalgia, I find they aren’t being nosy — they are actually curious and/or concerned. Instead of just blowing it off with a one-sentence response, I give them a few minutes of time to help them get a glimpse, without freaking them out. Here’s how it goes:
One day I woke up and I thought I was getting the flu. I had that all over achiness, I felt run down and tired, plus I was in a haze — it was like walking in a fog. We’ve all had that, right? It is usually the first indication a nasty bug is about to settle in and mess up a few days of our life. We might take something, hoping to keep it at bay, but usually it is too late and we are down until it passes. It might be a stomach bug. It might be a cold. We might win the lottery and get both at the same time. Whatever it turns into, however, we have that day of all-over yuckiness to prepare us for what is to come.
Now, imagine waking up in that pre-flu state every day. Like every. Single. Day.
Some days are better than others. Some days it feels like the full-blown flu. Other days I am pretty good and go about my day. There are flares that cause additional issues with specific pain points, IBS issues, migraines and more, but the average day is like walking through, working through, living through, loving through, laughing through and crying through a pre-flu state. This illustration seems to bring it home to people — everyone has had those crappy days so it is easy for them to relate to that illustration of what it is like.
Luckily my current medication regimen works well to keep my fibromyalgia more manageable and tolerable. For some people it is much worse, so I am blessed to have found great doctors and have been able to get it to a level that allows me to live my life pretty unencumbered.