“Life is not a competition. Life is about helping and inspiring others so we can each reach our potential.”
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 worse?” I’m not sure if I’m just me 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:
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 everything 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 ME/CFS and Fibromyalgia so fatigue is a big problem for me. I’m virtually bed bound 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 migraines that last for days”
What I actually said:
“Don’t you have a fan in your bedroom” (I couldn’t bring myself to empathise on this occasion)
4. It’s not just loved ones that say insensitive things; my care workers often do to. 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 2 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 2 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 bed bound”
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 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 being ‘Grumpy Jo’?
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.
Now, I know a lot of my frustrations come from a lack of understanding and empathy from others. And reading back over this post I do 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.
Just because someone experienced their problems differently doesn’t make me or them any more or less, they just had a different experience, and that’s ok.
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 continue to choose my battles and acknowledge some things are just not worth my energy. I will also accept everyone has their own challenges in life and I will try my best to empathise with them.
Life isn’t a competition
So what am I trying to convey with this post?;
If you have a friend or loved one living with a chronic illness, and they tell you they are exhausted or in pain, please don’t say “Me too”, please don’t invalidate their struggles. We often hide the true severity of our symptoms because we don’t want to worry our friends or cause a fuss. So, it’s likely that our symptoms have gotten pretty bad, if we feel the need to talk about them or have a rant.
And please be aware of your conversations with people living with chronic ill-health. Your comments may seem harmless to you, but take a moment to pause and think; Am I being insensitive? Do my comments invalidate or belittle their struggles? Remember what the “chronic” part of chronic illness means – long-term, ceaseless, incurable, severe. We don’t get a break from our pain and no matter how hard we try, or how many times you tell us, we will not “Get well soon”.
Unfortunately the “who has it worse” competitions are also prevalent within the chronic illness community itself. But when we pit our struggles against each other, it leaves no room for understanding or sharing experiences. It closes the door to connections with the people that could help us feel better. So can we make an agreement please?: no more endlessly competing – let’s support each other. Take care x
Does anyone else find they have to suppress their thoughts and feelings to keep the peace? What insensitive comments have been directed at you, and how did you respond?
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Ah, it’s so hard to bite your tongue sometimes. This frustrates me as well, even before I got sick. People get into this conversational habit of having to “beat” whatever complaint the other person has. It’s not a competition in suffering! People need to learn how to actively listen to each other.
It’s hard, isn’t it? Sometimes it’s best to just bite your tongue and let it go. I guess to them, it is freezing, or they are exhausted or in agony. They don’t experience worse than that, so that is their perception of feeling ‘bad’. And although that would be a brilliant day for you, they want their pain acknowledged sometimes.
Thank you for the opportunity to share, I have never been able to talk about this to someone who gets it. It’s sad that I’m not able to share what my life is really like with my healthy friends and be supported because I still support them as much as possible through their ups and downs. These once close friendships are now superficial for me. However, I’m just beginning to attempt to be vulnerable in these types of forums/communities and am hopeful of making some real connections. Thank you again.
I’m sorry you unable to share how you feel with your healthy friends. When you live with a chronic illness its so important to be able to talk about how you are feeling. I have made many spoonie friends online, I hope you find some too. Take care x
There are certain things I just don’t challenge, because it’s too exhausting. Or it’s unnecessary. Or I know people didn’t mean it that way. That said, about 14 years ago I was in a really rough spot and had simply no energy. It was during this time that I realized pretending (hiding) the reality of my life was not doing me any favours. One, it took a lot of energy and at the point I had almost none. And second, it did a disservice to the people around me, who could offer support or help if given the chance. Obviously, if someone consistently tried the competition nonsense, I edited myself around them. Or I tried to be as kind to them as I had hoped they would be to me. When someone always has to have a worse experience, they probably don’t feel heard either. Not necessarily by you, but by the world in general.