How to Handle the "You Don't Look Sick" Comments

Often, the worst part about having an illness like fibromyalgia is the number of times we have to hear "but you don't look sick!" It's true that our illness doesn't make us waste away like many other illnesses do, and it doesn't twist our joints like arthritis, but it is no less debilitating- and often it is worse than the other illnesses I've mentioned because of its very unpredictability. We can feel great on Monday, and go out and socialize and have a wonderful time- and then Tuesday, we can be unable to get out of bed!

It's difficult to find a way to explain to someone who can't feel how you feel what you are going through- there's the "spoon theory," where you compare your ability to do something to having a finite number of spoons, and when you run out, you are done. For some people, however, that just doesn't ring true, because they can push themselves beyond their limits even though they will pay for it later. Plus, the "spoon theory" doesn't touch on the pain you experience even when you are participating in an activity.

Fibromyalgia is similar to arthritis- the pain is always there, just in the muscle rather than the bones or joint. I have even heard people say "Fibro is like arthritis of the muscles." The pain doesn't go away. You wouldn't expect an arthritis patient to be able to run a marathon if their arthritis was in their hips, would you? Well, the same is true of a fibromyalgia sufferer. They know their limits because their pain has taught them what they can and can't do, for the most part. Unfortunately, with fibromyalgia, they have the added problem of the occasional flare, which will sneak up on the fibro patient and attack without warning. So, sometimes, they will think they can do something and discover they can't.

So, how do fibromyalgia sufferers deal with explaining this problem to other people? Generally, they tell it like it is. The problem comes in when the other party complains "but you don't look sick!" Then, the fibromyalgia sufferer is up against that wall of disbelief- which is, honestly, understandable. However, we are sick, and we need just as much care as people who look sick. One method that I have used in the past is to compare myself to someone with arthritis- they often do not look sick either. However, they are, and most people can relate to arthritis. It is something very easy to understand, and nearly everyone knows how painful and debilitating arthritis is. Many of us have grown up with grandparents or parents suffering from it- and if you've ever been called into the kitchen to open a can for grandma, you know intimately how arthritis can steal the strength from a healthy looking person. Fibromyalgia is the same way. I, who used to open jars and bottles for my mother and grandmother, now need my husband to open the same jars and bottles for me.

Another way of explaining the pain of fibromyalgia is to compare it to the aches that accompany the flu. Often, when you first get sick with a cold or the flu, you may not look sick- you'll have a few symptoms, maybe a cough or a bit of congestion, but you look fine- and you get those awful body aches that make you feel like you've been hit by a truck. Nearly everyone has felt them. Nearly everyone can relate. I can't recall a person who hasn't flinched and looked at me much more sympathetically when I say "You know how you feel when you have a bad cold? Those all over body aches? That is how I feel all the time."

The last way- and the one I save for people who just won't listen any other way- is to ask them if they've ever broken a bone. Not everyone has, but for whatever reason, a lot of the people who don't want to hear about "aches and pains" have. If they have, then remind them- "you know how much it hurt when it was healing? That is the kind of ache I deal with everywhere all the time."

Most of the time, they'll look at you a lot more respectfully, and they'll leave you alone about your "invisible" illness.

Unfortunately, there is a small segment of people who simply refuse to believe. You will have to decide if it's worth it to continue to interact with them. If they are family, you may not have a choice- hopefully you can minimize contact with them, or have helpful and sympathetic relatives run interference for you. If they are not family, my advice is to cut all ties. You will be much better off for reducing your contact with people who will look at you skeptically every time you need to sit down and rest, or ask for time off for a doctor's appointment. You may not realize it, but their actions impact you- and you'll feel a lot less stress if you reduce contact with people who are skeptical of your fibromyalgia.

Fibromyalgia is stressful enough without having doubters and skeptics dragging you down. My disbeliever was my doctor- and trust me, my life is MUCH better off with a doctor who believes and understands the stresses of fibromyalgia!

Surrounding yourself with people who will lift the burden as much as they can by supporting you and bringing joy and laughter into your life will help you immensely. Try to educate the skeptics- but if they remain disbelieving, kick them to the curb! You don't need that in your life, trust me!