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Feb 042015

wordsPhotograph taken from here

I have to admit that when I was first diagnosed with CFS, everything that everyone said to me to help just made me feeling overwhelming down and even more disappointed in myself than I’d ever been before. Here are a list of the things that hurt the most:

* “Yes, I’m tired too”- I’ve gone into this a little bit more here, but comparing everyday, running around tiredness with CFS is like comparing a walk around the park with a marathon. Please remember though if you’re on the receiving end of this comment that is it only said with love and good intention. It’s such a crazy illness and people would love to get a glimpse of what you’re going through.

* “Are you depressed? / Do you think it’s depression?”- granted, the symptoms of depression are similar in a lot of ways to CFS, but people with CFS at their core aren’t usually depressed- just frustrated and dying to pick up where they left off. Occasionally people with CFS might be slightly down, but the CFS is causing this feeling rather than the other way around.

* “Come on, let’s go shopping / Let’s get you out and about”- this is the #1 way most people will try and help you. Say gently and with gratitude that you’re not up to it today, but would love to go some other time. If however you do feel like going out and feel that you could cope with it, be honest about what you think you can do and for how long. My main problem when I was recovering was not being honest with other people and, more importantly, myself, about how much I could cope with. Cue: feeling like I was on the verge of collapse in supermarkets and shopping centres. A walk around the park or a car trip to the local shop might be just what you’re looking for.

* “Snap out of it!”- trust us, if we could, we would! It’s incredibly hard for people to understand CFS, but please don’t blame others for frustrated outbursts of their own. They just want to help you and have no idea how or where to start.

These are just a few I’ve experienced, but I’m sure there are many more. Please feel free to share them in the comments below, even just to vent for while!

Remember, always approach your family, friends, your illness and yourself with love, kindness and patience.

Love and light,

Katie     xx

  12 Responses to “The worst things you can say to someone with CFS”

  1. I’ve found the hardest thing is constantly being asked “how are you?”, “are you feeling any better?”, or even worse “you’re looking better today!” (especially when just moment before someone has said “you’re looking pretty run down today” – sigh…

    • Hi Chris- yep, it’s a constant battle! People always used to ask me, “Are you feeling any better?” in the same way someone would ask, “Have you snapped out of it yet?”. So frustrating sometimes!

      Thanks for commenting Chris!

  2. Yep, it’s been a tough one! My fatigue really became debilitating shortly after my marriage ended. My parents are no longer living, so my family was my sister and her husband and my cousin and her husband. I wasn’t able to attend many family get togethers due to how I was feeling, and my ex husband was invited to all gatherings. After a while they stopped inviting me, and became really close with my ex husband. One of the last conversations I had with my sister, she told me I need to get on some anti-depressants, and she was tired of listening to me because all I ever talk about is my health. At one point I couldn’t even clean my house, so asked her to come and help me, her response, “I work full time, and you want me to clean your house?” “Get your kids to do it.” Okay, that’s when I stopped asking for help from her or even trying to explain myself. This has been a huge lesson in setting boundaries and following my intuition. Family or no family, I can no longer spend time with people who do not support me or my healing.

    • Jada, my darling, I’m so sorry to hear you’ve been going through a tough time. As you say, it serves as “a huge lesson in setting boundaries and following [your] intuition”. Even though I tried hold on to old friendships, I just had to let them go eventually- they weren’t supportive of me at all. As you say, defining boundaries can be difficult, but often necessary.

      Stay strong my lovely- thank you for sharing your experience.

      Here’s to your healing! xxx

  3. Hi Katie….this is a great post. I’ve been recently diagnosed and had several comments from my husband today including “you’re not that ill” and “just do something”. Along with my friends laughing at me for needing a nap and thinking that I am not coming out because I don’t want to….it is sooooo frustrating and upsetting. Oh yes, and the texts saying “are you better yet” and “hope you get better soon”. Well of course I hope I get better soon, but its a bit hard to tell when so something like I hope today isn’t too bad for you would be better!! I feel like I have finally given myself to a 12 step program, stopped ruining my body/mind and 9 months in I get CFS…I just want to be able to study and get on with my life…!! How do I even start to explain to my nearest and dearest (who, BTW haven’t even bothered looking up the illness) that I don’t know how much energy I will have and when? And when I say I can’t get up I really mean I can’t get up because it feels like my brain is being pinched into my skull and my shoulders are going to pop?!?!? I only got married 10 months ago and I am already thinking that he doesn’t support me when I am ill……..

    • Hi Katie (great name, by the way!)- wow, I really, really feel what you’re saying in the pitt of my stomach, this was exactly me all those years ago. I found that my friends and family didn’t really look up my illness either and it really, really upset me. The best thing you can do at the moment is to breathe through it all- it’s so difficult for others to understand what we’re going through. Sending them loving thoughts (I know, it’s really flippin’ difficult sometimes!) is a great start and a great way to protect your precious energy.

      You could always show them my website, especially this article here, which I wrote especially for our family and friends who maybe don’t understand what we’re doing through. I really hope it helps you my darling.

      Keep smiling, Katie- you’re stronger than you know. Hope you’re having as good a day as possible.
      Love, Katie xx

  4. I’d say the most frustrating this is people trying to compare their tiredness to ours. people will say I don’t know why but im tired to day. I just want to say yes but not as bad as me!!!!!! I have had this illness now for around 5 years. It never gets easier and always is hard. People just don’t understand what we go through and I’m tired of it!!!!!!!!!

    I apologise for this rant =) x

  5. This is another great message Katie. It really hits home for me! I’m curious if you have any advice for me on what to do in situations where someone close to me, (let’s say my mother) becomes very overbearing of everything I do, say and eat? My mom thinks all of my problems can be taken care of with diet alone, and she is extremely critical of everything I eat. Whenever she is around I have to be extraordinarily cautious of what I eat, but sometimes I slip up. I’m sure you know how exhausting it is to cook every day, and how easy it is to grab something quickly. Even if I do grab something quickly, I try to make sure that it’s the healthiest possible thing for me and my family. Today while talking on the phone, she mentioned I was “killing myself ” by eating poorly, and this came about because I ate a hamburger on the run the other day? I understand that sugar is not good for you and salt can be bad in high quantities, but sometimes I just grab what’s closest to me because I’m hungry and exhausted, and I don’t have the time to make healthy and high-quality meals for my family. I hope this is making sense, I would just really love advice from anyone, on what to do when someone close to you thinks they have all of the answers. I know that what she is saying is out of love and concern, but it really does end up making me feel pretty bad about myself. Thanks again for your amazing blog Katie. It has helped me greatly.

    • Tara, that must be such a difficult situation for you. I wrote an article recently about how even just eating when you have CFS/M.E. is a bonus in itself (you can see it here), and I hope that it helps a little. I know lots of other CFSers feel the same.

      You might also want to show your Mum this article if you think she’d be open to it. We’re all just trying our best.

      I know it’s incredibly difficult, but sending her lots of love might help with any anger you have. Hope that helps a little Tara- thank you for sharing- xx

      • Thank you so much Katie. I loved reading your articles, once again. I think it’s so important to make sure your mind and body are working together, it’s imperative to not get bogged down by negative thoughts from yourself or those around you.

  6. To right Tara

    Love the how do you expect to get better with out doing anything ;)

    Chin up

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