6 Things Chronic Fatigue Patients Are TIRED Of Hearing
And one thing we never get sick of
Having an invisible illness that has no cure and no public support is not easy. But it’s also not easy to talk to someone with Chronic Fatigue (CFS) about their experiences without saying something inconsiderate or hurtful. Sometimes we say things with the best of intentions and they just come across wrong.
So if you know someone with CFS here are six things you should never say to them, and one thing that will cheer them up immensely.
1. But you look great!
Approximately 96% of people with an illness have one that is invisible. This means that whether or not you are able to see it is pointless.
Asking for help when you have CFS can be really difficult because your symptoms are not always apparent to the naked eye. In the USA alone, 26 million people have a severe disability, but only 7 million of them use a visible device. Simple tasks like riding a bus or going out for coffee become enormous obstacles for those with invisible illnesses.
So telling someone they look healthy, even if it was intended as a compliment, oftentimes translates to ‘I don’t believe you’.
2. Have you ever tried going gluten-free?
From the day of diagnosis, CFS patients are bombarded by ‘foolproof’ treatments for their incurable disease. Most suggestions, however helpful you consider them, often just MAKE US ANGRY.
CFS currently has no known cause, cure or viable treatment, which means that a simple suggestion like this one can come across as trivialising a severe illness. It implies that the only thing that was wrong with patients the entire time was that they ate bread. You cracked the case! Sound the alarms!
3. Lying in bed all day? Sounds bliss!
This one should be an obvious ‘no no’. CFS isn’t a holiday from work or school, nor is it an opportunity to ‘Netflix and ill’.
CFS confines many patients to their beds and houses with debilitating symptoms that often require crawling to the bathroom in pain.
After all, there’s a difference between choosing to have a day in bed and having it physically forced upon you.
Those CFS patients that are bed-bound are unable to participate in society. And while that does include activities like school and work, it also includes coffee dates, movies, morning runs, parties and picnics.
This is one of the most inconsiderate things you can say to someone with CFS. It is deeply trivialising and is decidedly lacking in sympathy. Don’t say it.
4. I get tired a lot too.
Studies have shown that there are significant differences between normal fatigue and the fatigue experienced by CFS patients. Therefore, attempting to draw comparisons between yourself and those who suffer from CFS is not the way to go. Only those who experience the illness can truly understand what the person is going through.
Maybe the comment was said as a way of empathising with the other person. Unfortunately, it can often come across as the very opposite of empathy and leads the conversation away from the person suffering. Instead, it is better to ask questions about how CFS fatigue feels different to normal fatigue. CFS patients love to have a good old whinge to someone who is willing to listen.
5. Taking a nap again?
You ask like it’s a voluntary thing.
There is a difference between having the ability to take a nap and having the ability to stay awake and function like a human being.
6. I’m sure you’ll get better.
The intention of this comment is rooted in kindness. Unfortunately, it can be very frustrating for CFS patients to continuously keep hearing because it is essentially a hollow hope.
There is no known cure or treatment for CFS. It is a chronic illness and there is no assurance that a patient will get better. It is better to offer your support to the person and ask what you can do to help them instead.
So what the heck should I say?
It seems as though anything you say to someone with CFS can come across as inconsiderate, unhelpful or even trivialising. But there is one thing that you can say to us that we never get tired of hearing:
“I looked up your illness.”
CFS is a deeply misunderstood. At times, the social prejudice towards it is more debilitating than the illness itself. There is nothing more flattering then when a friend tells you that they are educating themselves on what the illness truly entails.
To all those who take the time to research CFS: