Now, before we get into this post, I want to clear a few things up. First of all, I’m just one person. I’m going to try and be as accurate for the general chronic illness community as I can, but this is based on my experiences and personal thoughts. Therefore, if I were you I wouldn’t rely on my suggestions blindly, as each person is different, and may have different preferences about whether or not they’d like to talk about their chronic illness. The best thing if you’re unsure would be to simply ask that person if they mind or don’t mind. And then most of all, respect their answer. Great! Now that we have that sorted out, let’s get to it!
One day I was hanging out with a group of girls who were eating lunch. I only knew one of them, and I was wearing my mask that day. The girl that I knew made a joke about my mask. I’m not entirely sure what it was, maybe something to do with my lack of facial expressions? (It’s a long story). She laughed, and I laughed, but the rest of the girls looked back and forth between the two of us uncertainly. They had no idea whether they should laugh or not. And they sure didn’t know if they should ask either.
In case you’re wondering, I didn’t mind at all, and my laugh at the joke made was genuine.
But I get that question a lot, whether it’s verbally, or through clear uncomfortableness in the other person. They don’t know if they should as questions, or not. They don’t know if I mind talking about it, or not. And I applaud them for their sensitivity! Thank you!
My answer always used to be, “No, I don’t mind! After all, if I’m not willing to talk about it, how can anyone ever understand me?”. I also realized that it is such a huge part of me that if I held it back from friends, they would never get to really know me. You’ve probably assumed that I don’t mind talking about it either by now. I mean, I did start a blog about my chronic illnesses after all! And I didn’t mind it.
But then… things got harder. When I started this blog I hadn’t yet experienced the feeling of trauma fully. I hadn’t had to deal with the anxiety and depression side of Lyme disease yet. When those things set in, things did get hard to talk about. Suddenly, those things hurt at a deep level to remember.
After the initial realization of the pain I was now experiencing to talk about those things, I was able to sort it out a bit better. I was able to separate the ‘facts of life’ parts from the ‘this hurts really bad emotionally right now’ parts. I had so many symptoms, that I could always fall back on the less emotional topic of gut pain/bloating if I needed to when someone was asking about my chronic illness, or if they asked about more emotionally painful symptoms.
Maybe that isn’t the best way to deal with it, but the truth is, I’m still figuring out how to deal with it. I’m sure that I’ll write another post in the future to deal with it for those with chronic illness, but for now, that’s not my goal. This article is meant to address the question of if it’s okay for someone without a chronic illness to ask about someone else’s chronic illness.
As I said before, I can’t give you a solid ‘yes’, or ‘no’, but hopefully, these tips will help.
Don’t ask:
- … if you don’t want to really know.
- …in a crowd. One on one is better.
- …in passing. Most of my answers will probably take time.
- …only about it. Remember that I do have other things in m life besides being sick. Yes, being sick will affect those things, but if you only ask about what foods I can eat it can get rather depressing for both of us.
- …if you can’t handle the answer. My answers will be messy both physically and emotionally.
- …if your first response is going to be to suggest a magical cure. For example, I’m so glad that vitamin D helped you cousin, but yes, I am already taking it (and a bunch of other supplements). Not that I won’t accept suggestions! Just maybe that shouldn’t be your first response when you don’t know the full situation and haven’t researched my illness extensively yet. 🙂
Do ask:
- …if you are really ready to truly listen, remember, and have time enough to hear.
- …educated questions. When you’ve even done even a quick Google search of word definitions to understand what I’m talking about it means a lot and makes it easier for me. It also means you are more likely to believe me. Be willing, though, to learn that your research or conclusions were incorrect. 🙂 Chronic illnesses are complicated, even for me. 😉
- …how you can pray for me.
- …rather than assume. Especially if you’re trying to do something for me. (Thanks, btw!)
- …if you have a chronic illness too. We can encourage each other!
I hope this helps! The best thing you can do is to pray for God’s guidance, words, and discernment. Often people with chronic illness have the confusing but equal desires to talk about it, to have someone listen, but also just to forget it, and talk about other things. I know we’re confusing, so just ask if we want to talk or not!
Definitely agree with the do’s and don’t’s. I have a couple of specific people in my life who asked on a weekly basis about my health in front of many other people, and asked about the details of my tests and offered their own unsolicited advice. I have finally had to remove myself from the situation. It was frustrating. But if someone truly wants to know and is willing to just listen vs giving “advice,” or especially like you said if they’re also a spoonie, I’m more than happy to share and explain!
Yes, it’s such a fine balance! On the one hand, we want to be thankful for their concern and gracious, but other some things people don’t need to know (or want to), which we’d prefer they didn’t ask about. 🙂 The *way* someone asks me makes all the difference, I’ve found. Two people can say exactly the same words, and yet have totally different hearts.
Yes exactly!
This is great stuff to know. Thanks for sharing!
Glad to help! 🙂