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.
Chronic Rants 
Really, I don’t have any close friends, just my boyfriend. I don’t share a lot of details with him because he’s really squeamish about bodily functions, medical procedures, etc.
I do have some friendly acquaintances through work who know I’m dealing with a chronic illness, but I don’t really go into detail with them. Most of them don’t even know what my illness is. My boss, however, is pretty awesome about it. He’s even done some basic research on ulcerative colitis so he knows what I’m dealing with, and one time he texted me because he saw a commercial for an IBD website. He’s really understanding of my limitations, so I often work from home when I’m really sick. (Luckily, my job often allows for that.) I don’t think the bosses above him know, but I rarely see them–it’s a weird organizational structure.
Usually when someone asks me how I’m doing I just say ‘the usual – up and down’, unless there’s something different from my usual such as being a lot worse or better. In those cases I will say ‘actually, this week has been really good/bad…’ and then say why.
I enjoyed reading this and found it useful – it put things into a different light for me (especially how you say about stating things factually).
I’m pretty open/ honest. More in person than I am online, probably. If someone asks me how I am I’m honest. “I’m ok” honestly means that “I’m ok” or at least that nothing is specifically worse than normal. If there’s something going on I’m honest about it. If I have to cancel or decline plans I’m honest about the reason. That said, I’m not going to describe my latest bout with IBS either. But, I might tell them how awesome my new bidet is!
I might say ‘not good’ the pain has been really bad’ ‘a bit up and down’ fatigues beenbad’ feel like a wet dishcloth’ having a good day for me’ can hardly move cos of the stiffness’ a bit iffy’ can’t keep much down today’ ok ish’
While not moaning I’ve been ill too long to say just ok so am fairly truthful without boring people.
Hugs x
I do hate that wincing look people get when you answer a question honestly…
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