Collected here are the top 10 most frequently provided answers to question number 22, “What is the one thing you’d like your family/friends to really understand about CFS?” Responses were limited to 100 characters, and some were stated using different words, but I’ve tried to capture the “essence” of the most consistent responses with a few direct quotes as well.
CFS is real. “I’m not making this up.” “My symptoms are very real even though you can’t see them.” “I am sick with a real disease and I’m doing the best I can.”
It is very debilitating and disabling. “CFS is as disabling as HIV, cancer and MS.” “Staying at home is not a ‘fun vacation from reality.’” “CFS is absolutely life-altering.”
The fatigue is very intense. “It’s more than being tired.” “My energy is very limited.” “I understand you’re tired, but it’s not the same as CFS.”
Looks can be deceiving. “I don’t look as bad as I feel inside.” “Even when I look good, I feel awful.” “Just because I look okay now, know that I’ll pay for it later.”
CFS is unpredictable. “I don’t know from one day to the next how I’ll feel.” “I have no control over how I feel.” “I need to be flexible in planning things.”
It has nothing to do with being lazy. “I wish I could accomplish more each day than I can.” “Even simple things are often beyond my ability.” “I’m not trying to get out of doing something when I say I can’t.”
Words don’t do CFS justice. “There’s no way to accurately describe how bad I feel.” “I still hurt as badly 20 years later as I did the first day I got sick.” “Even when I don’t talk about it, I still feel sick.”
CFS is very isolating. “I am often lonely and alone.” “Life moves on without me.” “Nobody understands what I’m going through.”
Your understanding is important. “I am so grateful for my family’s support.” “I am very lucky to have their understanding. It makes life bearable.” “I still need quality life experiences and to be involved.”
CFS is not a choice. “I don’t want to be this sick.” “I miss the person I used to be.” “It’s so sad to miss out on so many things in life.”
Consider sharing this list with the people in your life whose support is important to your well-being. Maybe it will start a dialogue that helps deepen their understanding of what it’s like to have CFS.