How To Talk about Your Chronic Illness + Free Printable

I asked on my Twitter what part of living with chronic illness you would like help with and one response was how to talk about your chronic illness and the way it affects your life without seeming like you’re complaining. This is something that I think a lot of people can relate to, which is why I’ve decided to dedicate an entire post to it and I even made you a free printable worksheet to help you organize your thoughts when it comes to it (scroll down to get it!).

Common Spoonie Conversational Issues

What you need to know to help you talk about your chronic illness in a way that doesn't make people think you only ever talk about your health.

The problem: When we talk about our chronic health problems, it’s easy for the people we’re talking to to feel like it’s all we’re talking about. Finding the balance can be difficult, so it’s important that we identify why and how much we’re talking about it. At the same time, it isn’t always on us to change what we talk about, as sometimes it’s on the people we talk to to change their attitude.

I think that the first thing needed before we move on is for you to think about how you talk about your chronic illness. When do you discuss it? Proportionally, how much of what you talk about is about it? For example, if 50% of your daily life is about your chronic illness because of medical appointments, procedures, etc., it would make sense that 50% of your conversation is about it. What else do you talk about? How much do you think you hold back when it comes to sharing about your chronic illness?

What they need to change: There is a chance that the people you interact with need to remember that your chronic illness is a part of your life and you’re going to talk about it. Some people need to get that you’re not going to avoid talking about it just because they think that you shouldn’t. One of the problems is that, for a really long time, almost no one talked about things like their health, so it’s hard for some people to wrap their minds around the fact that you can talk about your chronic health problems without it being your entire life. That’s on them.

How To Talk about Your Chronic Illness Click To Tweet

What you need to know: You need a support system, including at least one person who you can talk with about everything regarding your health without much filtering. You shouldn’t have to hide all of it inside you. But make sure that you pick someone who seems to be fine with hearing all about your health. If you can’t find someone who you can talk to about this, I strongly suggest finding a therapist, especially one who specializes in chronic pain or chronic illness (yes, these specialized therapists exist!). You might want to find one even if you have a strong support system because living with chronic illness can be a lot and you need to look out for your mental health, too.

Talking about chronic illness can be tricky because you might worry that you're making your entire conversation about yourself. Here are several tips to help you walk that fine line.

How To Talk about Your Chronic Illness

There are a couple of different situations in which you might talk about your chronic illness. First, you might be updating people on your health developments. Second, someone could ask you what you’ve been up to that day or week and your health affects your answer. Third, you might have something really great or really bad happen and you want to talk about it. So how can you talk about your health in these situations without the people you talk to feeling like your health is all you talk about?

I’ll address each of these issues in a row. First, if something has changed in your health life but you don’t want to feel like all you talk about is your health, mentally create different versions of the update with varying level of detail. For example, I was diagnosed with endometriosis at the end of January/beginning of February. When I told some people, I just mentioned that I had a new diagnosis and what it is. When I told others, I went into a bit more detail and explained how it affects me and my treatment process. When I told other people (the people I’m closest to), I explained the entire diagnosis process and how I feel about it.

Second, when someone asks how you’ve been or what you’ve been up to, mentally figure out how much detail they actually want. Sometimes, people ask how you’ve been because it’s the polite thing to do, and not because they actually care how you’re doing. In these cases, you can give them a non-committal answer or just say something like, “Well, I’ve spent a lot of time at the doctor’s office this week, but that’s just how my life is,” and then you move on. Other times, they do want to know how you are, but they’ll think you’re being narcissistic if you spend a lot of time talking about your health, in which case you should do what I talked about with the previous issue: mentally evaluate how much they probably actually want to know (usually based on how close you are with them) and tell them the appropriate amount of information. If you’re talking to someone who you’re close with and they ask you what you’ve been up to, tell them as much as you want. If they ask you what you’ve been up to and they don’t want to hear the answer, then you shouldn’t be good friends with them any way.

Finally, if something really great or really awful has happened, you might want to talk about it with people. Like with what I said for the previous 2 conversational topics, how much detail you provide might depend on how much the person you’re talking to cares. However, everyone likes good things more than they like negative ones, so if you have good news, shout it from the rooftops! Fewer people will care about you talking about that than if you’re talking about bad ones.

If someone accuses you of talking about your health too much, here's what you can say Click To Tweet

If someone tells you, “You sure talk about your health a lot,” here are some possible response:

  • “Well, it takes up a lot of my life. You talk about [x] a lot, and my health is like that in my life.”
  • “Do I? I don’t mean to, but it’s a big part of my life right now.”
  • “Being sick/chronically ill can be a full-time job. I don’t want to talk about it a lot, but this is what’s happening right now.”

Talking about My Chronic Illness Symptoms Free Printable

Check Out:

Accepting Your Body with Chronic Illness, 4 Questions To Ask Before Traveling with Chronic Health Problems, Relationships and Chronic Pain

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  • Reply Lauren

    Thank you for this- it’s nice to know other people struggle with this balance too. I have a genetic connective tissue disorder that unfortunately affects several facets of my health, and I feel so guilty having to take time off of work for doctor’s appointments, but I have to remind myself it’s not something I have any control over.

    Lauren | Boston Belle

    March 29, 2017 at 10:15 am
  • Reply Alura- Petite Chai

    This sort of thing can be difficult to talk about. You want to be honest and let the other person know it hasn’t been easy lately, but most of the time they aren’t really interested. I’ve found I need to have at least one person I can be completely honest with, then the rest of the time I just mention it briefly

    April 7, 2017 at 4:06 am
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