Sometimes it's hard to know what to say to someone with an invisible illness, such as fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS).
I recently looked at 5 Things People with Invisible Illnesses DON'T Want to Hear - now here are 5 things we do want to hear:
- "If you're not up to going out, we can just get together and (talk/play cards/watch a movie)." This shows that you understand the limitations of the illness and gives the person an alternative to canceling plans.
- "Let's do our grocery (or Christmas) shopping together. I'll pick you up." Shopping can be extremely tiring for us, and it can really help to have someone else there to help with things like loading and unloading the car, or trekking back across the store for a forgotten item on the other side.
- "How much are you up for today?" This shows that you understand energy levels can vary from day to day and can help your companion feel comfortable expressing his/her limitations.
- "How are things going?" This is better than asking "how do you feel." It opens the door to all aspects of life, instead of just physical well being. Most days, I don't feel that great, but my life might be going really well.
- "Can I (pick you up/help with that/etc.)?" This works better than something like, "Do you need me to...." because it shows a willingness to help without implying the person is incapable or is a burden.
If you're willing to put in the effort to understand your friend's/family member's illness and limitations, thank you! Chronic illness can be lonely, and having supportive people around us is invaluable.
Suggested Reading:
I feel so blessed in that I have a wonderful husband who (most times) realizes I just can’t keep the pace like I use too. He may not fully understand the illness, but he knows me well enough to tell when it’s not a good day for me. He will run to the store alone, stop to get gas in the vehicles and back the car in the drive so that I don’t have far to walk, little things that mean so much to make life a bit easier. I also have a best friend who has rheumatoid arthritis and we lean on one another as well. It’s so nice to have compassion from loves ones. It makes me want to get up the next day and helps me cope.
Here’s more:
1. But you look so good!
2. Just think positively…
3. I hurt too (said by someone who ice skates and plays tennis; I guess her hip problem doesn’t hinder her much)
Margo
I also have a wonderful husband who never makes me feel lazy when I am unable to do the simplest things, he just takes over and finishes whatever it is I am unable to do. If I have a mental blank, cannot remember a particular word in a sentence or the name of someone we’re talking to, he will say their name (knowing I have forgotten) which has save me from some very embarrassing moments.
The tiredness, weakness, unable to think clearly, inability to read directions on how to operate a simple device – all these things and so much more are so crushing to the soul.