Ableism towards Fibromyalgia and ME/CFS patients
Originally published on my Medium account on ME/CFS and Fibromyalgia Awareness Day.
Today is International ME/CFS and Fibromyalgia Awareness Day. These are two different conditions but some patients have both and we all have some similar experiences in addition to very different ones. One similar experience is that many people simply don’t believe our conditions actually exist, including health professionals, and we experience a lot of "medical gaslighting" as a result. Living with an illness knowing many don’t believe in it is an extremely lonely place to exist in. You may not know in the beginning of disclosing your illness to someone if they will be supportive or not. When you get a new doctor, you never know if he or she will believe in your diagnosis or be up to date on the research. When we see comments online or hear someone make a joke trivializing our experiences and spreading harmful misinformation, it’s hard not to feel discouraged and exhausted.
In honor of this day and awareness month, here's a piece I started a few months ago on some of the ableism that patients with Fibromyalgia, ME/CFS, and similar conditions (including Long COVID) often experience. I encourage everyone to listen to the stories of people with these conditions today. MEAct is a great organization for ME/CFS and Unrest is a great documentary on ME/CFS if you need a place to start.
Even though it is becoming more common to talk about how certain comments hurt those of us with chronic illnesses, it isn't as common for microaggressions towards chronically ill people, who are part of the disabled population, to be labeled what they truly are: Discrimination. Ableism. Unacceptable.
I want to add a disclaimer before I go on that I obviously do not think every person who has made an ableist statement is an evil, irredeemable person. They are human, and we all unfortunately grew up in an ableist society. However, too many will make these kinds of statements and see nothing wrong with what they've said because our society encourages ableism at worst and excuses it at best, and we as a society fail to properly hold people accountable when it comes to all forms of bigotry, including ableism.
People with Fibromyalgia and ME/CFS often encounter two forms of doubt: doubt that we have a chronic illness ourselves, and doubt that our chronic illness is even real. Despite the research that says otherwise, and the fact that every good doctor I've seen has acknowledged its existence, many people still don't believe Fibromyalgia is real, and the same is true for ME/CFS. They are considered by an unfortunate number of ignorant people to be "fake illnesses" that lazy people use as an excuse to get out of things.
There was a time when I felt a mixture of fear and shame when I revealed my diagnosis to people. The fear was because I didn't know if the person I revealed it to would respond with understanding or skepticism. The shame was because I thought it was shameful to have an illness many did not believe was real, though I don't feel that shame as much anymore. I want to note that many of these are not specific to those living with Fibromyalgia or ME/CFS and are actually things that most people with invisible chronic illness experience. However, as someone with Fibromyalgia myself, I am writing this specifically with how people with Fibromyalgia experience ableism in mind - and I am aware that for patients with ME/CFS, the ableism is often very similar and in many cases even worse.
The first one is becoming very prevalent due to wellness culture. It is the belief that if I did this simple thing more, like change my diet or exercise or do yoga, I could be cured. People know this is annoying but they don't realize it's ableist. Not only is it a very individualist take on chronic illness, it places the blame on me for my health issues. It says I still have Fibromyalgia symptoms because I haven't done enough research on possible "cures" related to diet and exercise. But I don't have fatigue or pain simply because I don't exercise enough or eat right. Wellness changes can improve our well-being in some ways, and I'm not saying they're unimportant, but they're extremely unlikely to cure a person with Fibromyalgia or ME/CFS or another chronic illness. And it cannot be reiterated enough: it is never a person's fault that they have a chronic Illness. This is so simple but unfortunately our society tries to tell us otherwise.
I already touched on the ableism towards contested illnesses, but I'll get into it more. People with Fibromyalgia and ME/CFS see people everywhere saying our illnesses aren't real. This is beyond frustrating because not only is there medical evidence that they exist, but if they really weren't real, we wouldn't have to live with the exhausting reality of them. Sometimes people make jokes about how they're not real and we're just tired all the time or faking it. It's not just denying an illness that doctors and researchers have said is real, it's denying our experiences. If I say I'm having a Fibromyalgia flare, and you don't believe Fibromyalgia exists, you're going to think I'm "wrong" about the pain I'm experiencing, that it's all in my head or I'm exaggerating or making it up. If you think I believe I have a made up illness, you're insulting my intelligence and critical thinking skills, as if any quack doctor could say something is wrong with me and I'd believe him without doing my any research of my own. I believe contested illnesses like Fibromyalgia and ME/CFS are often contested because the least research has gone into them. This can be due to medical bias about the populations most impacted (such as women) or just the fact that society doesn't take symptoms such as pain seriously if there isn't an obvious reason for it.
There is also, of course, the ableism that a Fibromyalgia or ME/CFS patient is actually faking it. This isn't just a judgment about our illness, but a judgment about our character: that we would try to deceive others into thinking we're chronically ill or in pain when we're not. This isn't just limited to Fibromyalgia patients or those with contested illnesses - if you have any disability, especially an invisible one, you've probably been subjected to this, or you at least know it could happen. Maybe someone thinks we are faking an invisible illness so we will get extra care we don't need, or we're lazy and want to get out of something. Either way, not only our illness but our very character comes into question. People who believe this about us often paint us as hysterical patients trying to get attention. This belief is also responsible for the fact that disability benefits are often so difficult to get - you must jump through hoops to prove you are actually disabled and not a faker. I wonder, too, if this belief is rooted in anxiety. It may seem scary to think that a person can have an illness you can't see. People might start to wonder if they could have an invisible illness too, lurking somewhere inside their body until a flare gets triggered. So they would rather shun the idea of an invisible illness entirely. Being at the receiving end of this kind of treatment can be difficult to cope with. I was made to feel like an "illness faker" when I was as young as in middle school. I still fear it, but I am at least armed with more of an awareness of how absurd it is and how ableist one must be to accuse someone of faking a chronic illness, and this awareness makes the anxiety slightly easier to cope with.
Another form of ableism directed towards Fibromyalgia and ME/CFS patients may seem harmless at first. It is the belief that Fibromyalgia or ME/CFS are real, but caused entirely by one's thoughts and emotional states. This line of thinking basically leads to the conclusion that someone can cure these chronic illnesses by changing their thoughts, such as thinking more positively or working through psychological issues. While it is true that stress impacts our flares, unfortunately we can't simply think our way out of Fibromyalgia or ME/CFS. If we could, we would have done it by now. These conditions simply wouldn't exist. None of us want this so if we could stop having flares by changing our thoughts, we would have done this ages ago instead of suffering for years. I once tried listening to a podcast about Fibromyalgia that turned out to be a Christian doctor saying Fibromyalgia patients hold onto anger and trauma and we would be cured if we let go of it and choose forgiveness. It was infuriating to hear but it was a great example of this form of ableism. It is essentially a combination of "it's all in their head" and "actually it's the patient's fault that they're sick." I have had a doctor ignore the severity of my fatigue, suggest that I was merely depressed without asking me anything about my emotional state, and try to suggest I just go to therapy (which I was already doing). This doctor deciding my fatigue was depression did far more harm than good. ME/CFS patients have spoken out about how this idea that all their symptoms are psychological harms them as well. This idea has also led to ableist articles about the chronic illnesses community online, with headlines that they are "addicted to being sad" and articles about how they "keep each other sick."
Lastly is a common one that people with most chronic illnesses experience. It is when people try to prove that they aren't really sick for various reasons. It could be related to the other forms of ableism I mentioned, such as believing someone is faking it or that the condition isn't real. In an attempt to "prove" that the person doesn't really have Fibromyalgia, someone will point to various factors. They may say things like "How can you really be sick when you look so well?" or "All your test results are normal!" Fibromyalgia patients are essentially perfect victims of this form of ableism because our test results often are normal, and the same can be true for many ME/CFS patients, especially when their doctors aren’t running the right tests. A person looking for reasons to disprove that someone with a chronic illness is sick may also point to the fact that their symptoms often come and go. They may ask "How can you be sick today when you were fine yesterday?" This just shows a person's ignorance about chronic illnesses. Most chronic illnesses will come and go, giving a person a flare of symptoms one week or even one day and none the next. That is unfortunately the reality we live with, and if that person listened more to people with chronic illnesses, they would know this.
These ableist beliefs about Fibromyalgia and other chronic illnesses create microagressions that lead to trauma. I'm not a psychologist, but I know from reading I've done, my own experience, and from talking to other chronically ill and disabled people that the trauma from ableism can lead to feelings of isolation, self-blame, inferiority, social anxiety, depression, and more. They also create barriers - academic barriers, financial barriers, employment barriers, healthcare barriers. Ableist professors and disability services offices won't grant us certain accommodations we need, ableist employers may not give us certain accommodations, ableist doctors may not diagnose us, it may be difficult for us to win a disability/SSI case. Lack of support from friends, family, and community can make these problems even worse. I don't know an easy fix for society's ableism towards people with Fibromyalgia, ME/CFS, and similar chronic illnesses. I do know that whatever that fix is, it can't happen without us treating these attitudes and beliefs as serious forms of ableist disability discrimination whenever they are expressed.