Talking about fatigue to people who don’t experience it
Important fact – you don’t owe anyone a justification or explanation for any of the choices that you are making to help you live well with chronic fatigue.
In my experience, there are two groups of none MSers who will try to talk to you about living with fatigue, the first care about you and want to better understand what it’s like to live with fatigue so they can help you live your best life. The second group have zero interest in what it’s like to live with fatigue and are hoping to use the conversation as an excuse to talk about their own issues or an opportunity to tell you they think your fatigue is physiological and could easily be sorted out if your life had a bit more structure.
It’s really easy to find yourself trapped in a conversation with the second group.
Initially, you could try to distract them by saying ‘Quick look behind you, at literally anything other than this conversation’ and then leave whilst they are distracted.
Secondly, if that doesn’t work because you can’t leave for some reason or your healthy friend has become wise to your tricks and doesn’t turn around, move the conversation skilfully on with a subject change. Something like this: “Yes, it is a mystery that I didn’t have enough energy to do that unrealistic thing you wanted me to do but I did have enough energy to do a realistic thing that you weren’t interested in. You know what’s a bigger mystery? How come Scrappy Doo can speak normally but Scooby Doo can’t?”
Then if they still won’t let it drop remember you have the absolute right to say, “I don’t want to talk about this right now” or “This is absolutely none of your business”. You don’t owe anybody an explanation or justification about how your illness affects you or how you choose to manage it.
Ask yourself is this conversation worth the energy?
You may have to accept there are always going to be people in your life that just don’t get what it means to live with fatigue no matter how many times you try and explain it, and let’s face it there are only so many ways to say, ‘I have less energy than you because my body wastes energy attacking itself’, I guess you could get creative with it and try an interpretive dance routine or a puppet show but honestly I think some people are just incapable of imagining a life without good health. If you have someone in your life like this it’s probably a better use of your energy to come up with some coping strategies to deal with them like telling them you’re exhausted because you are up most nights training your cat to steal diamonds which is a totally hilarious lie just don’t tell the police you saw me at Hatton Gardens.
This is going to come up again and again so it’s worth rehearsing what you want to say.
I don’t know about anyone else but I get extremely flustered when talking to none MSers about what it’s like to live with MS, doubly so when it comes to talking about fatigue. I think it’s because the stakes feel so high, I’m aware my life would be so much easier if they understood what it means and the pressure to say the right thing makes my mind go blank and my tongue get tied essentially ensuring I say the wrong thing entirely. If this happens to you it might be worth taking some time when you’re feeling relaxed and articulate to come up with a few stock sentences you can relay to explain your fatigue experience. Don’t ask me what you should say though, I literally just came up with this idea and will be figuring out my sentences over the next few weeks. I’ll also be practising saying ‘I don’t want to talk about this now’ and ‘My cat and I both have alibis at the time of the diamond heist’. Though that last one is unrelated.
Hi, I’m Letty McHugh an artist and writer living in Haworth, West Yorkshire.
My hobbies include falling off ill-advised clogs into oncoming traffic, an adventure sport I created and expect to sweep the nation soon.
I’ve been making jokes about my MS on the internet since I was first diagnosed with RRMS in 2012. You can read more posts from Letty at www.lettymchugh.co.uk
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