Over the years, this has been my most visited post. This really saddens me. Perhaps you have arrived here because someone you know has Fibromyalgia and you can't understand why sometimes they seem quite well and other times they do not. Maybe you have Fibromyalgia and you are sick of having to justify yourself.
I'd like to spend a little time explaining why Fibromyalgia symptoms can, frustratingly, lead to people asking the question: do they have Fibro, or are they faking it? The short answer is that you can't tell simply from how consistent someone's symptoms appear.
Why Fibromyalgia Can Look Inconsistent
The NHS explains that Fibromyalgia symptoms can vary from person to person and can also improve or suddenly worsen in severity for people living with the condition. If Fibromyalgia is still quite new to you, you may find my guide to What Is Fibromyalgia? helpful too.
So, if you are confused because somebody seems alright today when they were not yesterday, that is exactly the kind of fluctuation they are referring to.
Things That Can Look Like Faking Fibromyalgia
Let's examine some of the reasons you may be reading this post.
Having good days and bad days
With Fibromyalgia, people can have good and bad periods. Sometimes you can do things to try and reduce the chance of a flare-up, for instance by managing or reducing stress.
Some triggers cannot be controlled, such as changes in the weather, which can affect Fibromyalgia symptoms. The reality of living with a chronic health condition is that you can be sick at Christmas, you can end up missing things you have looked forward to and even end up cancelling holidays.
If someone seems to manage something enjoyable but not something else, they may well have paced themselves and missed out on other things so they could participate. What you don't necessarily see is what they did less of beforehand, or whether they paid for that enjoyable activity afterwards with increased symptoms or a flare-up.
Looking well when they're supposedly ill
Unfortunately, for an observer, Fibromyalgia is a condition that can have no obvious external signs. A leg may be hurting as much as if it were broken, but the bone itself isn't broken and there is no plaster cast to show everybody that something is wrong.
Similarly, prickling or burning sensations don't necessarily come with a giveaway rash.
The NHS stresses that Fibromyalgia can be difficult to diagnose because there is no specific test for the condition. Blood tests, X-rays or scans may be used to rule out other possible causes, but they don't confirm Fibromyalgia. The condition is thought to involve changes in the way the central nervous system processes pain.
For me, one of the most obvious things you can see is my facial expression. When my pain is bad, I will no doubt be grimacing, unless of course I have succeeded in losing myself in a mindful activity.
Symptoms changing from one day or hour to another
The very nature of Fibromyalgia is that symptoms can be variable. You can have good and bad days, but sometimes things can change within hours. There are the dreaded flare-ups too, and not all of them are the same. You can read more about that in Not All Flare-Ups Are the Same.
But there are the good times too, when you overreach even knowing it could cause more pain afterwards, because then and there in that moment you felt like your old self and you grab onto the feeling so hard and don’t want to let go.
Michael just has to look at my face to get a pretty good idea of how I am doing. Someone else may have very few outward signs at all. Neither tells you how much pain or fatigue that person is actually experiencing.
Cancelling at the last minute
Because symptoms can change so quickly, it is quite possible that someone could make plans to see you because their condition has been quite settled lately. Then out of nowhere, the clouds gather, or some other random event causes a change, and their symptoms worsen to the point that they have to cancel.
Cancelling social plans at the last minute is not something people with Fibromyalgia enjoy. Living with a long-term condition can make maintaining friendships and a social life more difficult, particularly when you repeatedly have to miss things or cancel plans.
Fibromyalgia can also contribute to depression in some people, while becoming more isolated can affect your wellbeing too. So please remember this if you have a friend with the condition. A cancelled plan may be disappointing for you, but there is a good chance they are disappointed as well.
Not constantly looking for a cure
A common pattern you tend to find in chronic health forums is people constantly researching, whether it is for an ultimate cure or even just a treatment that might alleviate some of their symptoms. Many people with Fibro and other chronic health conditions want to get better and reclaim their lives. They do not want to be ill.
I can now look back at that statement, which I wrote many years ago, and realise how much my own approach has changed. Compared with that earlier stage of my journey with Fibro, I am no longer frantically searching everywhere for the next possible cure.
This isn't because I have given up on myself. I have a better understanding of what the condition means and, importantly, that there is currently no cure for Fibromyalgia. There are treatments and ways of managing symptoms, and what helps one person will not necessarily help another.
I have also known someone who was eventually told that Fibromyalgia was no longer the correct diagnosis for her. She was given a different treatment plan and improved considerably. So occasionally when you hear that somebody has been “cured” of Fibromyalgia, the explanation may be that what they were living with turned out to be something else.
So somebody who is no longer constantly researching Fibromyalgia isn't showing you that they don't want to get better. They may simply have reached a different stage of living with a long-term condition.
What About Guilt and Aspirations?
Guilt is something I have come across again and again when talking to people with Fibromyalgia and similar chronic health conditions. People can feel that they are letting down colleagues, family or friends.
Let’s look at this from a different perspective. Who, except possibly the owner of a small business, ever feels guilty for taking annual leave? Not many people, I’m sure.
Taking leave is “allowed and expected”, whereas being off sick can somehow feel as though you are “doing wrong”. When I was in full-time employment, I was always happy to muck in and do extra if a colleague was ill without thinking twice about it, and yet I felt guilty when it was me taking the time off.
Guilt was particularly difficult for me in the earlier years of chronic illness. Over time, I have learnt that carrying that guilt doesn't help me and can become another source of stress. I understand my limitations much better now and would rather contribute when I am able.
Aspirations come and go too. A few years ago, I thought I might be able to make a living for myself making greetings cards. I made just over £5. There have been many projects, big and small, that have been impacted by my health.
It is important to remember that illness changes people differently. Someone having big plans is not evidence that they're genuine; someone struggling to imagine a future isn't evidence that they're not.
Can Someone Fake Fibromyalgia?
Of course someone can lie about having Fibromyalgia, just as someone can lie about virtually anything. There are also psychological conditions such as Munchausen syndrome, where someone deliberately pretends to be ill or causes symptoms themselves.
But that is very different from somebody with Fibromyalgia having a good day, managing one activity but not another, or experiencing symptoms that seem inconsistent from the outside.
The important thing is not to mistake the normal variability of Fibromyalgia for evidence that somebody is faking it.
What If You Think Someone Is Faking?
The first thing I would say is talk to them. Even more importantly, listen to them.
Just because their symptoms appear inconsistent, or you don't understand the decisions they are making, it doesn't mean you know what is happening behind the scenes. Approach the conversation through the angle of interest instead of judgement.
Ask them how they are, and I don't mean the frightfully British “How are you?” “I'm fine, thank you” conversation. Really ask them how they are and be prepared to listen to the answer.
You may still not completely understand their experience, but listening without immediately looking for reasons to disbelieve them is a much better place to start.
Fibromyalgia Doesn't Have to Look Consistent to Be Real
Many people who are genuinely living with a chronic illness have been accused of faking, sometimes even by the people closest to them. It can take a while to trust even family members, especially when you have felt disbelieved before.
Fibromyalgia doesn't have to look consistent from the outside to be real. So if somebody has trusted you enough to talk about what they are experiencing, listen before you judge.
Don't be that person who makes a bad situation even worse.