Stigma. Wow, that's a big word. Muddles here, and... I'm feeling low. I, along with many others, live with chronic illness. No secret there. But one thing I don't think I've mentioned before, and the thing that I very rarely mention, is the name of one particular condition. Because it's a condition a lot of people say don't exist. I've read articles saying it is an invention of lazy people who want to live off the state for their entire life and never have to lift a finger for themselves again. Today, I found out a journalist joked that he should fake the disease that I have, and have a few decade long holiday. And so I'm going to try and write a post about it, and explain why joking about a disease or syndrome, insulting the people who have it and insinuating that it doesn't exist is so hurtful.
You know, I fancy myself as someone who is really very good at dealing with things. Who isn't afraid to talk about my health problems. But I've just written the first paragraph of a post about chronic fatigue syndrome without mentioning it by name.
That's the thing. I happily talk about all my health problems with anyone who asks. But for some reason, I never mention Chronic Fatigue Syndrome. I might mention that I have fatigue, but I avoid the name.
But why?
Let me just leave this quote here, from an article published in the Times.
"Such is the success of the provisional wing of the ME lobby that the evidence is ignored by the World Health Organisation and our own National Institute for Health and Care Excellence. Let them have their medical illness if they want it, seems to be the response."
Yeah. Because that's how it works. I can't even begin to explain how wrong this guy is, he makes me much too angry, but here's a Guardian article that covers it pretty well.
So let me explain why this subject hurts.
When I started uni, we had a series of lectures covering the human basis of medicine. One of the sessions was on stigma. And the example they used was Chronic fatigue syndrome. At the time, I didn't know I had it. I was attributing the symptoms that I experienced to everything else. But I read studies where people with CFS/ME described the symptoms, and the stigma. The way people thought that they were "just a bit tired". When I told someone that I had CFS, I was asked if I slept too much or too little.
Really?
CFS/ME isn't sleeping too much. It isn't sleeping too little. It means I get 7 or 8 hours sleep each night, and wake up feeling as tired as I was before going to sleep the night before. It means if I try to concentrate on anything, after only a few minutes I will start to feel my energy levels dropping, manifesting in a headache, muscle pain, and yes, exhaustion. If I push further, my brain starts to work less well. I forget things, I have blackouts. Decision making is particularly difficult. I can stand staring at a supermarket shelf, unable to decide what I want to eat, not able to recall what I ate the day before or the day before that.
This is a serious illness. The fact that we don't know what causes it yet doesn't mitigate that. It doesn't mean you can pretend it doesn't exist. It doesn't mean you can joke about it, or call people who suffer from it "fakers" or "lazy". It doesn't mean you can say "it must be lovely to have CFS, it means you can spend all day sleeping at home and don't have to work."
The awful thing is that people do say these things. News organisations publish articles written by the people who say those things. It's easier to write an inflammatory, angry article attacking vulnerable members of society than spend hours, weeks and months researching a topic, and speaking to people who have diseases. Articles full of hate and ignorance are easier than ones full of feeling and fact.
And every time I read an article written by someone who clearly comes from a place of ignorance who decides to use their public forum to insult people with a disease... I get angry. And then I get sad. And then... I begin to feel frightened. People have read those articles. People have formed opinions based on those articles. They have been told that it's OK to joke about people with CFS. They've been told that it's OK to think that CFS patients are fakers. And it makes people like me, with CFS/ME are more likely to be ashamed of their illness. They're more likely to be afraid to talk about it. They're less likely to get the help they need.
Let me spell it out for you. There are two groups of people who are allowed to have an opinion on any disease. These are the people who have personal experience, who have it themselves or are close to someone who does, and the people who spend their lives studying or treating the disease. Everyone else? You listen to what these groups say, and you believe them. You don't have the right to claim you know better. You don't have the right to air your own opinions in public. Because when you do, you create a more adverse environment for the people with that disease. You actively make life harder for the people with that disease.
People with CFS/ME have it hard enough as it is. We live with a disease that makes every single part of our life harder. No-one knows what causes it yet. No-one knows how to treat it yet. One thing that would make it easier to deal with is being free to talk about it without being afraid that the the people around you are judging you, because they read an article in a newspaper or online. Because they heard the shouting voices proclaiming people with a disease as slackers, as fakers. People who pick on us, because we're easy targets.
So please, when you see people writing about it online and claiming it isn't a real disease, when you hear people discussing it, ask them where they get their facts from. Don't just laugh awkwardly and hope they'll stop, call them out. Point out the fact that many diseases that are now accepted were once not understood. And if someone talks to you about an illness they have, whatever it is be sensitive. Be non-judgmental. If you have questions, ask them out of a spirit of honest curiosity. More people than you realise have chronic health problems. Medicine is always progressing, but there's a long way to go. Until then, society needs to learn to accept people as they are. Be part of that.
Ignorance is easier than knowledge. When ignorant people are given a voice, people listen to them. When people start with knowledge, their shout might not be as loud, but in the end it will be heard.
You know, I fancy myself as someone who is really very good at dealing with things. Who isn't afraid to talk about my health problems. But I've just written the first paragraph of a post about chronic fatigue syndrome without mentioning it by name.
That's the thing. I happily talk about all my health problems with anyone who asks. But for some reason, I never mention Chronic Fatigue Syndrome. I might mention that I have fatigue, but I avoid the name.
But why?
Let me just leave this quote here, from an article published in the Times.
"Such is the success of the provisional wing of the ME lobby that the evidence is ignored by the World Health Organisation and our own National Institute for Health and Care Excellence. Let them have their medical illness if they want it, seems to be the response."
So let me explain why this subject hurts.
When I started uni, we had a series of lectures covering the human basis of medicine. One of the sessions was on stigma. And the example they used was Chronic fatigue syndrome. At the time, I didn't know I had it. I was attributing the symptoms that I experienced to everything else. But I read studies where people with CFS/ME described the symptoms, and the stigma. The way people thought that they were "just a bit tired". When I told someone that I had CFS, I was asked if I slept too much or too little.
Really?
CFS/ME isn't sleeping too much. It isn't sleeping too little. It means I get 7 or 8 hours sleep each night, and wake up feeling as tired as I was before going to sleep the night before. It means if I try to concentrate on anything, after only a few minutes I will start to feel my energy levels dropping, manifesting in a headache, muscle pain, and yes, exhaustion. If I push further, my brain starts to work less well. I forget things, I have blackouts. Decision making is particularly difficult. I can stand staring at a supermarket shelf, unable to decide what I want to eat, not able to recall what I ate the day before or the day before that.
This is a serious illness. The fact that we don't know what causes it yet doesn't mitigate that. It doesn't mean you can pretend it doesn't exist. It doesn't mean you can joke about it, or call people who suffer from it "fakers" or "lazy". It doesn't mean you can say "it must be lovely to have CFS, it means you can spend all day sleeping at home and don't have to work."
The awful thing is that people do say these things. News organisations publish articles written by the people who say those things. It's easier to write an inflammatory, angry article attacking vulnerable members of society than spend hours, weeks and months researching a topic, and speaking to people who have diseases. Articles full of hate and ignorance are easier than ones full of feeling and fact.
And every time I read an article written by someone who clearly comes from a place of ignorance who decides to use their public forum to insult people with a disease... I get angry. And then I get sad. And then... I begin to feel frightened. People have read those articles. People have formed opinions based on those articles. They have been told that it's OK to joke about people with CFS. They've been told that it's OK to think that CFS patients are fakers. And it makes people like me, with CFS/ME are more likely to be ashamed of their illness. They're more likely to be afraid to talk about it. They're less likely to get the help they need.
Let me spell it out for you. There are two groups of people who are allowed to have an opinion on any disease. These are the people who have personal experience, who have it themselves or are close to someone who does, and the people who spend their lives studying or treating the disease. Everyone else? You listen to what these groups say, and you believe them. You don't have the right to claim you know better. You don't have the right to air your own opinions in public. Because when you do, you create a more adverse environment for the people with that disease. You actively make life harder for the people with that disease.
People with CFS/ME have it hard enough as it is. We live with a disease that makes every single part of our life harder. No-one knows what causes it yet. No-one knows how to treat it yet. One thing that would make it easier to deal with is being free to talk about it without being afraid that the the people around you are judging you, because they read an article in a newspaper or online. Because they heard the shouting voices proclaiming people with a disease as slackers, as fakers. People who pick on us, because we're easy targets.
So please, when you see people writing about it online and claiming it isn't a real disease, when you hear people discussing it, ask them where they get their facts from. Don't just laugh awkwardly and hope they'll stop, call them out. Point out the fact that many diseases that are now accepted were once not understood. And if someone talks to you about an illness they have, whatever it is be sensitive. Be non-judgmental. If you have questions, ask them out of a spirit of honest curiosity. More people than you realise have chronic health problems. Medicine is always progressing, but there's a long way to go. Until then, society needs to learn to accept people as they are. Be part of that.
Ignorance is easier than knowledge. When ignorant people are given a voice, people listen to them. When people start with knowledge, their shout might not be as loud, but in the end it will be heard.
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