10 Ways to (Somewhat) Understand How It Feels to Live with Fibromyalgia

How we see the world shapes who we choose to be – and sharing compelling experiences can frame the way we treat each other, for the better. This is a powerful perspective.

Author: Paige Cerulli

Fibromyalgia, a disorder that causes chronic pain, is still poorly understood. I live with fibromyalgia, and on any given day, I deal with issues like extreme fatigue, allover pain, and brain fog.

Since it’s largely an invisible illness, those who have it appear outwardly to be just fine. Unfortunately, that’s not actually the case.

Fibromyalgia is particularly difficult to describe to friends and family, since its symptoms vary in severity from day to day. It’s hard to explain to friends that you need to cancel plans because you’re tired, but often that’s exactly what’s going on.

Know someone with fibromyalgia? To start to understand what it’s like to live with this condition, I came up with 10 scenarios that might help you empathize.

  1. Make a to-do list for tomorrow. Then, pick only four items on your list to accomplish. If you try to do more than that, the next day you can only do two things.
    With fibro, I have to carefully balance my activities and how much energy I expend every day. Even though I may still have plenty of time left in a day, I need to be home and on the couch when my tank hits empty. If I overexert myself, I won’t have the energy to do anything for the next three days.
  2. Stay up for 48 hours straight, then read the dullest book you can find. You must stay awake until the end of the book.
    This scenario doesn’t even accurately capture the extreme fatigue that I sometimes feel. Sleeping pills will help me fall asleep, but because I’m in constant pain, I don’t get that deep, restful sleep that many others can enjoy. For me, it seems like there’s just no way to wake up refreshed.
  3. Walk on a plush carpet while wearing socks and really slide your feet across the carpet. Touch a metal doorknob and think about how that shock feels against your fingers. Now, do it again. And again. And again.
    Because fibromyalgia affects my central nervous system, my body’s pain response is amplified. I experience these lovely electrical shooting pains on a regular basis — and they’re worse and longer than a static electricity shock. It’s particularly inconvenient when they show up in the middle of a work meeting, making me almost leap out of my seat.
  4. Check your bank account to find out that it’s unexplainably been drained of $10,000 overnight. Schedule an appointment with the bank’s manager, who passes you to a customer service agent, then get passed on to another, then another.
    Fibromyalgia is still somewhat of a mystery disease: No one knows just why it occurs or how to treat it. Many doctors are so unfamiliar with it or don’t even believe it’s real that getting a diagnosis can be a marathon journey.

I can’t count the number of times when doctors simply told me, “I don’t know what’s wrong with you,” then sent me home without a referral or any suggestion of how to find out what was actually going on with my body.

  1. Run a 10K. You have no time to prepare or train. Just go out and run it, no walking allowed.
    How your aching muscles feel the next day is how I feel most days when I get out of bed. That feeling continues through most of the day, and pain medication doesn’t help much.
  2. Turn your thermostat down by 10 degrees. You’re not allowed to put on additional layers. You won’t find a comfortable temperature until things warm up in the summer, at which point things will suddenly be far too hot.
    With fibro, my body doesn’t regulate its temperature as well as it used to. I’m always freezing in the winter. In the summer, I’m unusually cold until suddenly I’m dying of heat. It seems like there’s no happy medium!
  3. Cancel a date with only an hour warning on a Friday night and explain that your child’s sick. See how your date reacts.
    Unfortunately, even when friends and family know I have fibro, they can’t always understand how significantly it affects my life. This is a scenario that I’ve actually been through, and the fact that I’m no longer dating that person indicates just how well he reacted to the cancellation.
  4. Spend a long weekend without interacting with anyone else except your loving, entertaining pets.
    My pets have become extremely important to me, especially during the times when I’m simply not up for interacting with people. They don’t judge me, but they also remind me that I’m not alone. Having them around makes flare days a little more bearable.
  5. Get seriously ill six times in a year. Call out of work for at least three days each time. Do you still have a job at the end of the year?
    With fibromyalgia, I never know when I’m going to have a flare day, and flares often make it impossible for me to commute in to work and sit at a desk all day. I’ve never been so grateful for the ability to work partly from home. It’s probably kept me employed.
  6. At work, forget deadlines by a few weeks, put items away where they don’t belong, and leave halfway through meetings without an explanation. Check out the reactions of your co-workers and supervisor.
    One of the most annoying symptoms of fibro just might be “fibro fog.” Some days, it feels like you’re living in a fog of confusion, and there’s nothing you can do to get yourself together. We’re talking putting your keys in the fridge, forgetting what year it is, and getting disoriented as you try to find your way home on a basic route you’ve driven hundreds of times before.

Fibromyalgia makes life insanely challenging, but it also brings its own strange advantages, like learning to be thankful for the small everyday beauties of life. One thing I’m grateful for are my loved ones who truly try to understand how I’m feeling, even though it’s challenging. Their empathy makes the worst days a little better.

Source: healthline.com