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,