Most people have the best intentions at heart when they tell you something. Especially your friends. Assuming you’ve got good friends obviously.
I DO BELIEVE MY FRIENDS ARE GOOD FRIENDS, THAT’S WHY THEIR ADVICE SURPRISED ME SO.
My goal in life is to spread awareness about living with multiple chronic illnesses. How being fatigued is not the same as being tired, how even when we smile we are in pain, how many people don’t understand us. But we try to explain it to them the best we can.
Let me explain why well meant advice can be hurtful by giving examples of advice given to me by my friends.
“Don’t be so negative and just go out there. Sitting at home by yourself is not helping you feel better”
When I say I won’t be able to make it, it’s a form of self care. I’m not being negative. Living with a chronic illness is exhausting and I need a lot of rest. Just sitting up in a chair “not doing anything” is already draining my energy. I’ve tried to explain this in my article “fatigue in chronic illness explained”.
When there are multiple people there, and music playing, it’s even more exhausting. Multiple people, bright lights and music and noises can overstimulate me, making me agitated and on edge. It’s not a fun feeling, and this happens faster when I’m already not having the best day.
This is most likely the reason I’m telling you, I can’t make it today. It’s not as simple as taking some pain meds and keep going. Like another helpful friends suggested. This is not a muscle ache, pain meds don’t take away the pain and don’t do anything for my fatigue and possible overstimulation.
“Just push yourself a little, when you put your mind to it you can do it”
The power of positivity is a good thing and you can accomplish a lot by looking at the bright side of life. I totally agree with this. But I can do that as much as I want, and it won’t take away my flare.
When I go out with someone one day and won’t go out with you the next, or vice versa, doesn’t mean I prefer their company over yours. It means that I need to recover from my outing.
It goes both ways, if I know I’m going out of the house in a day or two I will preserve my energy now. Pushing harder won’t accomplish anything but getting a bigger flare, and having to recover for even longer. Sometimes it can even leave you with long term damage. Nothing is worse than pushing yourself over your limits when you live with a chronic condition.
“Did you try yoga/kale/essential oils/alkaline water?”
Yes! I appreciate you trying to help me, but nobody is more invested in getting better than me! If there was a magic cure for my conditions, believe me I would’ve found it already.
Most of these things are part of my daily routine, eating an extremely clean diet, exercising (meaning basically just moving a little every day), supplements, essential oils, crystals and whatever else I can find that helps.
When you make a suggestion and I haven’t heard about it before, feel free to enlighten me and I’ll look into it. But when I tell you no thanks, for whatever reason, don’t push me. I don’t care that your sisters aunts friend was cured, I probably tried it and it hasn’t helped me. Or maybe I’m just tired of trying things for right now, and I simply don’t want to.
Knowing when to step back, knowing when advice is hurtful is hard, especially when you have no idea what it feels like to live the chronic illness life. But please, have respect and believe me when I tell you things. Don’t pity me and judge me, and don’t try to cure me. That’s all I ask.