I’ve received lots of emails about this recently and it’s a recurring theme of conversation with my coaching clients, and so I just thought I’d put my thoughts into a post.
Along with all of these lovely choice phrases, “Why are you so lazy?” or words to that effect, might have been aimed at your recently or during your illness. This hurts…I mean, really, really stings.
Up until about x-days/weeks/months/years ago, you had it all figured out. You had a job/income, you had some form of social life, you were frequently in touch with your family and friends, you could string a sentence together and things were generally pretty good. But now you can’t move- you can’t remember the last time you opened the curtains (never mind went outside), you feel incredibly guilty for not bringing in a salary and you feel as if your friends can’t be bothered with you any more. Now, to top it all off, you’ve got people thinking you’re lazy when you have CFS!
Ooooh yep, I hear ya! I’ve had this and all you want to do is scream and shout, and let them know what’s really going on. You’ve told them over and over, but they still don’t get it. Luckily, there are some things you can do to make everything a little bit smoother for yourself and others.
+ Show them this article. If they still haven’t changed their tune, show them this one or this one. If you still don’t get a flinch out of them after this, ask yourself some serious questions.
+ Know that if you were going to invent an illness, CFS/ME would be it. It’s almost like a crazy junior school Biology project:
Teacher: “Ok, everyone- settle down. Now what I want you to do is work in groups and invent an illness. You must describe it and then present it in front of the class. You have 10 minutes- off you go!”
Student 1: “I know! How about something where you sleep for, like, 22 hours a day- like Sleeping Beauty!!”
Student 2: “Yeah, and you can’t go to work because you’re too busy sleeping and lying in bed and people have to feed you and stuff?!”
Everyone in group: “Yeah, that sounds amazing!!”
See the humour in it- it might just get you through those “I really want to break your arm right now (if I had the energy)” kind of moments.
+ The dictionary definition of ‘lazy’ is: “averse or disinclined to work, activity, or exertion; indolent.” I have never, EVER met anyone with CFS/ME who is lazy. Most of the people I’ve spoken to are Type A Personality people and we do not do lazy. Perfectionist, yes. Lazy? Nooooo. People relapse with CFS precisely because they are not lazy- that’s half our trouble. We want to contribute to the world, to our lives, and so we push on and then make ourselves worse. Don’t you dare talk to me about laziness….! (Sorry, rant over!)
+ Understand at a cellular level that there is absolutely no way they can understand what you’re going through. No way. People can empathise, but they’ll only know it if they’ve been through it themselves. This might make you feel lonely or disconnected from everyone for a while, but it’s only temporary. Know that they just want to see you better, healthy and happy- ask for their help, even though they don’t understand this craziness. You look fine, so of course, they’re a bit confused (I remember wishing I could’ve broken my arm or something instead of having CFS- at least people can physically see there’s something wrong with you, right?)
+ You are still you. You are still you. You as a person and a beautiful soul have not changed. Your body is just taking some time out, because it needs it. Once you know who you are, and really know it and own it, those lazy comments will bounce right off you.
Smile, suck it up for a bit longer and know ultimately that these comments will stop. People will see how sick you are, not lazy, and will want to help in any way they can. Show them this website, point them to my Facebook page and show people that you’re not the only one going through this ‘laziness epidemic’.
I’d love to hear your comments below- have you ever been accused of being lazy?
Love, not laziness,
Katie xxx
People don’t say anything to my face but they give me ‘the look’ – kind of baffled, then awkward and suspicious. Do you know who is really the worst for suggesting I’m lazy though? Me! I feel so guilty, and so ashamed. Who am I to need so much more sleep and better nutrition than anyone else I know? Why does my body insist on having more care than other people seem to need? It’s a much needed lesson for me, learning to accept on a deeper level that one size doesn’t fit all, and I don’t need to measure up to other people. I still appreciate hearing somebody else say “You’re not lazy!”. Thank you Katie!
Oooh, Louise- you summed it up perfectly when you said that you feel you have to learn “to accept on a deeper level that one size doesn’t fit all.” This was a huge problem for me in my recovery. Guilt and shame come in waves all the time, and it’s only natural. I’ve written a post on shame here and another one on comparing yourselves to other people here- I really hope they help you, Louise. You’re definitely not alone in feeling like this! xxx
Wow!! Thanks, really needed to read those too
No worries- thank you Louise! Glad they helped! xx
Thank you….!!!! I really needed to hear those words because I feel guilty all the time and I know now I have never ever been LAZY always had so much energy…so glad to meet you I have been fighting this for 16-yrs so starting now I am changing how I feel and praying it will help me some…!!! again THANK YOU SO MUCH…!!!
Brenda my lovely, it’s my absolute pleasure. You are not lazy, you’re ill- there’s a difference! I have to admit though, there was a point when I questioned whether I actually in fact was lazy, as a few people had mentioned it to me. I know now that they were just concerned and wanted me to live my life as fully as possible.
Keep smiling my darling- thank you so much for visiting the site! xxx
Yep and some don’t say it but hint it, some that have been close friends but you see their true colours & closed minds to many things in their life not just your CFS. It’s still hard as I’m a perfectionist by nature and work hard when I can, always have. So to be thought of in the opposite way isn’t great for you mentally during CFS. After 7 years I say now… You know your own truth. My immunology doc even said it happens worse to those who are thinkers, perfectionists. You’re not crazy, you’re I’ll and it conflicts big time with your personality. I often say my body doesn’t match my personality. Now I try to make them meet in the middle, judgement from others doesn’t help. Know your own truth folks
P.s also hurts when you know someone close is thinking ‘but my friend who had cancer now works more than her, that guy with a false leg works more. She’s not helping herself, she might be lazy, milking it, how come she could do that yesterday but not work full time’ also I’ve often felt bad if I went to a gig, the pub and they find out ~ not knowing I’d been at home unwell most of the week and not seeing others & that after going out I can go home feeling shaky.
Aymi, thank you for sharing my love. It’s so hard when you actually find the energy to do something you like, but the experience isn’t a pleasant one because you’re frightened that people will see you and think you’re not ill. I’ve felt like that a lot in the past! It’s all about just being completely comfortable with wherever you are- xx
I absolutely adore what you said here…”YOU ARE STILL YOU. YOU ARE STILL YOU. YOU AS A PERSON AND A BEAUTIFUL SOUL HAVE NOT CHANGED. YOUR BODY IS JUST TAKING SOME TIME OUT, BECAUSE IT NEEDS IT. ”
When others feel the need to judge, I just have to laugh…they have NO idea what it’s like. But I do. I know myself, and I know my limitations, I know my strengths and my weaknesses, and I love them, because they are a part of me.
There are always going to be people who think you’re lazy, or some negative adjective, but you just have to remind yourself what you’re made of and that you are living with a debilitating illness. As Katie said, “You as a person, and a beautiful soul have not changed.”
Thank you my lovely! People will always have opinions of us from time-to-time, even without CFS, but we just need to remember who we are.
Love, Katie xxx
The worst culprits are the doctors. I started writing and it was turning into a massive rant. No one needs to hear that negativity.. my fiances family thought that I was pretending to be ill aswell. That now affects him more than it affects me..he could really do with some more support.
But there are people who do believe me, they may not understand how it feels but to believe me feels so much better. I just need to let go of feeling angry.someone somewhere said that its a good thing that others don’t understand cos only the people who go through it understand it. Makes sense to me I wouldn’t wish it upon anyone.
I used to feel guilty when I was trying to work. Going home sick and leaving them to struggle short staffed. Been on the sick for months now though. As long as they have cover I’m not worried anymore. Feel more guilty for my partner at times. I see how stressed he gets and know if I were better he wouldn’t feel like that.
I always enjoy reading what you write. You’re so positive and up lifting. Always makes me feel abit better.
Thank you for reading my love. This article on doctors might help, as well as this little video on guilt (I get a lot of comments on it!)
Please don’t carry guilt around with you, otherwise it’ll drag you under and you’ll feel a lot worse. You have done absolutely nothing wrong. You didn’t deliberately become ill- this one is out of your hands my love.
Big hugs, xxx
I just found your article and it made me smile. I’ve had fibromyalgia for years… I was just able to push myself through it. Worked 50-60 hours a week (total workaholic), hung out with friends all weekend and wrote in my spare time. Until my body just completely broke down. For the past five years I’ve been unable to work or do most of the things I used to enjoy. I have one friend left, and my family is convinced that I’m “simply” suffering from depression from my mother’s death 10 years before my physical break down (because depression can’t be serious, and that whole ten years when I was a fully functional, independent adult was just a fluke) and me not being able to work through a little pain. Even the government is divided… the state believes I’m disabled, the fed thinks I’m just severely limited. Like there are literally two jobs they think I can do. But your humor made me smile despite feeling like I’m trapped depending on people who for some reason just can’t believe that I can’t do more despite that I have done more for 20 years of my life. So thank you for getting me out of my head and helping me remember that they just simply can’t relate. Maybe one day they will, maybe they won’t. But at the end of the day, I’m still me.
Angie, I just love the final line of your comment. You’re you, and that’s all you can be. Take care of you, my lovely- follow your own guidance, and not the divided opinions and questions of others.
Love, Katie xx
Hi Katie – I wonder if you can offer me a bit of advice. I am getting older now (30-so not exactly ancient hehe) but I’m still quite severely affected (after 8 years) and living at home and unable to work. My fiance has left me 3 years ago and now my sister is moving out with her boyfriend. I feel really sort of embarrassed because all my friends are married and have their own house and my sister’s recent move has provoked attention to my situation from family members and friends. Lots of them don’t understand and treat me like it’s a choice. I’m sad to say it is making me withdraw from seeing people as I feel like a loser
xx
Katie, I know the feeling well. I’m sorry to hear you’re feeling a bit down at the moment. My book on Amazon might help a little bit, but I also have a few articles here, here and here that might help you.
Keep smiling, my love- xx
Thank you
xx