Often when I mention I have Chronic Fatigue Syndrome, the response I get is an awkward silence. It’s a response I understand very well- I got sick at age 21 and had my fair share of awkwardly silent moments from the healthy side of the conversation. I mean, what do you say when someone tells you he has a chronic, life altering illness?!
The fact is, there is no perfect response. Your reaction depends entirely on the situation- Who is the patient? Are you having a peaceful conversation in his living room or a casual chat at a party? Is she a new acquaintance or a long time friend?
While I can’t give you a perfect equation to follow, I can suggest one simple tip. Make sure, when talking about another’s illness, that the conversation is about your friend, not yourself.
That might sound a little funny at first. How can a conversation about someone else’s illness possibly be about you? Trust me- there are hundreds of ways. Here are three examples-
1) Proving Knowledge: I can’ t tell you how many conversations I’ve had that have gone like this-Me: Actually, I can’t work right now because I have severe Chronic Fatigue Syndrome Other Person: Oh really?! My Dad’s friend’s roommate’s cousin had CFS and he got better by taking Vitamin C. Have you tried Vitamin C? I bet if you did you’d get better.
Do you see how the conversation is suddenly about the Other Person’s knowledge? As a patient who has spent years pouring over all possible knowledge and flying to the nation’s best specialists, it is hurtful to have someone come up and assume he is so much smarter than me that he can solve in 5 minutes the problem I’ve spent years battling. If you honestly have something that might be helpful a better response might go like this-Me: Actually, I can’t work right now because I have severe Chronic Fatigue Syndrome Other Person: Oh really?! If you are ever interested in talking with someone who has been through the illness, my dad has a friend who battled it years ago. I’d be happy to give you his contact information.
See? Still about the patient. She might not want the contact info- but she can’t be hurt by your genuine desire to help.
2) Making Assumptions: Assumptions are something I battle on a daily basis. I recently started taking some classes at a local college. I’ve been having this conversation several times a week ever since-Other Person: You’re taking those classes now, you must be feeling better. Me: Not really, I’m just used to functioning when I’m really sick. Other Person: But you ARE feeling better than you were before the classes, right?! I mean, you couldn’t have done them before!
This one might be less obvious, but it is still about the Other Person. Making ‘If, Then’ statements (IF you can do this, THEN you must feel good. IF you can’t do that, THEN you must feel sick) is a way to prove you know what is going on in a certain situation. That might be ok in certain situations, but in the ‘If, Then’ used above the Other Person was basically saying, ‘I know so much about your illness that I can figure out what’s going on without you telling me.’ It is better to focus less on your knowledge and more on your friend. (I would actually suggest avoiding ‘If, Then’s all together.) A better response would go like this-Other Person: You’re taking those classes now, how have you been feeling with the extra work load? Me: Pretty bad, but I’m used to functioning when I’m really sick. Other Person: Are you worse now than before you started the classes?
3)Show Off How Much You ‘Get’ Her: This one isn’t as hurtful, but it happens a lot and is kind of annoying. People who I’m around on a regular basis begin to get knowledgeable about my illness and are so proud to begin showing off their knowledge. For example:Other Person: “Oh, your face is pale today! You’re pretty sick, huh?” or Other Person: “Wow, you look great today! It must be a good day!”
The problem with these statements is that they are often wrong, but the people are so proud of themselves that I don’t have the heart to tell them the truth. So if I’m sick and they think I look like I’m having a good day (this happens every time I put on enough makeup to look healthy) I’m stuck acting like I have a bunch of energy even though I don’t. Or, sometimes they stop by and I’m wearing sweatpants (often because I’m finally feeling up to cleaning the house) and they assume I’m sick and suddenly I feel guilty admitting I was in the middle of vacuuming. The better question:Other Person: “Hey, how are you feeling today?”
This might sound like a lot to remember, so let’s review the one rule all of these examples fall under:
Making sure the conversation is about your friend, not yourself.
Or, in other words, show your friend you care about him. Anything done out of sincere love is appreciated and helpful. Even if you accidently slip into one of the bad examples I wrote out above, if you are trying to show genuine care toward your friend he will be able to translate it into love. And really, in the end, love is just the thing we need to hear.