How much do your friends really know about your illness?

May 22, 2014

We’ve all had to face people who don’t believe that we’re as sick as we claim. In many cases, I blame them – especially when we’re talking about doctors and other medical professionals. However, I think that very often it’s we patients who are to blame. We don’t share the details of what we deal with because we don’t want to be seen as constantly complaining, or over-reacting, or because we’re embarrassed. Consider these two versions of a hypothetical conversation:

Version 1:

Her: Hey, what are you up to?

Me: Just cleaning the toilet.

Her: Do you want to join me to dinner tonight?

Me: I’d love to, but I already have plans.

Version 2:

Her: Hey, what are you up to?

Me: Just cleaning the toilet after last night’s IBS episode.

Her: What happened?

Me: It’s pretty gross. You probably don’t want to know.

Her: Go ahead and tell me.

Me: Well, I had some explosive diarrhea. I’m just so glad it stayed inside the toilet bowl this time! But it’s in areas that flushing won’t reach, so I have to clean it myself.

Her: I was going to invite you to dinner….

Me: Yeah, I’m probably not up for going out to a restaurant. Why don’t you come to my place and we’ll watch movies and chat?

Her: Great! See you tonight!

Do you notice something here? In the first version, I sound perfectly healthy: I’m cleaning the toilet and I have plans to go out, just like my friends. Nothing to worry about. In the second version I’m not complaining, but my friend now understands that I was recently feeling very ill, and that my day is about dealing with that. She doesn’t feel put-upon to listen to me complain, but she understands why I don’t want to go out to a restaurant. I’m not hiding anything, so I’m able to suggest a low-key evening and we can still spend time together. If I had instead said that I didn’t feel up to getting together at all, she would have understood why.

Some people will never believe what we deal with either because they’re too selfish to consider it or because they’re in denial. But most of the people close to us, the ones who love us and want us to be ok, have the capacity to believe us and understand, but when we hide things then we don’t give them that chance.

I am not suggesting that you always talk about every problem you have. That would allow for a balanced conversation. At the same time, I don’t suggest lying or hiding things, either. If someone asks how you are, what do you say? You could lie and say you’re fine, you could spend 20 minutes complaining about every symptom and the 10 different calls you made to the insurance company, or you could find the middle ground: you could state your problems matter-of-factly and then move on to talk about the other things in your life, even if they’re as mundane as cooking dinner or reading a new book.

There’s no one way to share information about an illness. You’ll have to figure out on your own what feels right. For now, start small: when someone asks what you did yesterday or who you’re feeling, try answering them honestly and see what happens. You just might find a bit more support when they know what you’re really dealing with.

How much do you share about your health problems? What do your friends really know? Please share in the comments so that others can learn about what works.