5 Insensitive Comments I’ve Actually Received About Chronic Fatigue

Does anyone else feel like they have to bite their tongue a lot? Do you hide a lot of what you are feeling because confrontations are exhausting? I seem to spend so much time suppressing my thoughts and feelings — I feel like I’m going to explode.

I sometimes find the people around me come out with insensitive comments, even though they might not mean them that way, and they turn simple comments I make about how I am feeling into a competition of “who has it the worst.” I’m not sure if I’m just being “grumpy Jo,” but sometimes comments really get to me. Sometimes I tire of suppressing my feelings to “keep the peace.” Sometimes the burden of my ill health and my attempts to remain positive become too much to bear.

Here are some examples of times when I suppressed my true feelings to keep the peace:

1. During the winter, I really struggle with my pain levels. The cold and damp weather always brings on a flare in my symptoms which makes it hard for me to sleep.

Me: “It was so cold last night.”
Loved one: “I know! You should try being out in it. You are tucked up in your nice warm bed in a warm house while I’m working outside in it.”

What I wanted to say:
“Does the cold weather cause you pain, even when you are wrapped up in layers of blankets and a heated throw? Does the cold penetrate your body all the way to your bones, making every inch of you throb in pain? Do you lie awake in tears all night, unable to sleep?”

What I actually said:
“Yes, I’m sure it must be hard for you out in these freezing temperatures.”

2. I have severe chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and fibromyalgia, so fatigue is a big problem for me. I’m virtually bedbound and I can only manage a few steps to the bathroom.

Me: “I’m so tired.”
Loved one: “You’re tired? I’ve just finished a 13-hour night shift.”

What I wanted to say:
“Are you so exhausted you feel like you are going to pass out? Are you so tired that even thinking hurts? Are you so tired that your body feels like it’s made of lead and even lifting your head of the pillow seems like an impossible task?”

What I actually said:
“I’m sure you must be exhausted.”

3. I really suffer in the hot weather too. I struggle to regulate my body temperature and the heat makes me dizzy, causes fatigue and I struggle to breathe.

Me: “This hot weather is really starting to get to me.”
Loved one: “You think it’s bad for you? You should try sleeping upstairs, it’s like a sauna.”

What I wanted to say:
“Does the hot weather cause you to become so dizzy you daren’t move, fearing you are going to pass out? Does the hot weather cause palpitations which take your breath away? Does it drain you of every ounce of your already limited energy, meaning you are too exhausted to even speak? Does it trigger migraine attacks that last for days?”

What I actually said:
“Don’t you have a fan in your bedroom” (I couldn’t bring myself to empathize on this occasion.)

4. It’s not just loved ones who say insensitive things; my care workers often do too. The following conversation was on Boxing Day. I had spent the whole of Christmas by myself because my husband was working and I was too ill for company.

Care worker: “How are you?”
Me: “OK thank you, how about you?” (This is my standard response because, to be honest, most people don’t actually want you to tell them how you are feeling, and they would run a mile if you answered this question honestly.)
Care worker: “I’ve spent the last two days with my daughter and grandchildren — I’m absolutely exhausted!”

What I wanted to say:
“I would give anything to be well enough to spend precious time with my family. I would love to be able to spend two days surrounded by the people I love. You have no idea what it feels like to be “absolutely exhausted.” And how insensitive to say these things to someone who is virtually bedbound”

What I actually said:
“It must have been lovely to spend time with your family.”

5. This was a conversation with another care worker:

Care worker: “How are you?”
Me: “I’m OK thanks, how about you?”
Care worker: “I’m in agony, I think I’ve pulled a muscle in my back.”

What I wanted to say:
“Imagine every part of you hurting, from the tips of your toes to the top of your head. Imagine having to shave your hair off because it’s too painful against your skin. Imagine even the slightest touch from your loved one triggering waves of pain. Imagine having to live in a dark room because light is agony.”

What I actually said:
I have to admit I couldn’t trust myself to say anything, so I just remained silent.

Am I just feeling sorry for myself? Am I just looking for sympathy and I get frustrated when I don’t get it? Maybe, but with everything you go through on a daily basis when you live with a chronic illness, it is understandable that some days we need a little sympathy or empathy.

Now, I know a lot of my frustration comes from a lack of understanding and empathy from others. And reading back over this post, I do think I come across as “grumpy Jo,” but pain and fatigue make me irritable and I really do find these conversations draining and frustrating. The truth is: no one but myself can truly know what I’m going through — no one can know what it feels like to live in my body, so how can I expect others to understand?

Maybe my own reluctance to share the severity of my symptoms with others is part of the problem? I often hide how bad I am truly feeling because I want to shield my loved ones from my pain. Also, just because my health may be worse than other peoples’ does not invalidate their feelings and frustrations. To the people involved, these are real challenges and problems.

So, I guess I will continue to suppress my reactions to these types of comments, whether that’s the right thing to do or not. It’s too exhausting to try to challenge them and I don’t deal with confrontation very well. I will accept everyone has their own challenges in life and I will try my best to empathize with them.

Does anyone else find they have to suppress their thoughts and feelings to keep the peace?