When Including Friends with Chronic Illness Feels Like Ignoring Boundaries

Text reads, "Plans? Yeah, I know...I cancel, I postpone, I reschedule, I delay committing. Illness sometimes controls my schedule, but I am determined it won't control me! Please keep inviting me."
I’ve been seeing a bunch of memes lately to the effect of, “keep inviting your chronically ill friends to things, even if they always say no/flake out/don’t respond at all/etc.”

(Chronic illness here refers both to mental illness and to chronic physical conditions like fibromyalgia and fatigue.)

That’s a bit of advice that I’ve endorsed and given myself, especially having so often been that exact chronically ill person. I do think that those who are close to someone with a chronic illness and want to be supportive should, if they can, make that extra effort and try to get past their own feelings of rejection to try to include that person, because even if they always say no, the invitations may be a heartening reminder that they’re still wanted and missed. That’s easy to forget when you’re in the throes of a chronic illness flareup, especially if it’s depression.

Lately, though, this advice has been giving me cognitive dissonance and I think I’ve figured out why.

This approach to friendships with chronically ill people–“keep inviting them over and over even if they say no every time!”–feels like it conflicts with another principle I generally live by, which is that if someone doesn’t seem like they want to do something but isn’t saying “no” directly, I treat that as a no. And if they keep saying “no” to my invitations without suggesting alternatives or otherwise indicating that they do want to see me and would if they could, I stop asking.

To people who give the “keep inviting them” advice, this probably reads as “being lazy”/”not caring enough about your chronically ill friends”/”taking their illness personally.” To me it’s respecting boundaries, including implicit or unstated ones. I would much rather risk hurting someone by being too distant than by being too close, i.e. crossing their boundaries.

Of course, ideally, that’s a false dichotomy. Ideally, I would say, “Hey, I’ve noticed that when I invite you to things you always say no/always end up canceling. Would you like me to stop asking?” And ideally you would say, “No, please keep asking, my depression makes it hard to keep or initiate plans but I appreciate being asked,” or “Yeah, my anxiety is too bad these days but I’ll let you know when that changes,” or “Yes, I’m sorry but I’m not interested in hanging out with you.”

That would be ideal. But practically, I am myself chronically ill (depression, anxiety, and fatigue) and don’t have infinite spoons to chase people around. (I think much of this “just keep asking them” advice presumes that these people’s friends are all healthy and neurotypical, when in fact, many of us end up being close to people with similar struggles.) And practically, at the point when communication has broken down so badly that I don’t even know if the person wants to see me or not, I don’t think I could trust them to answer that question honestly. After all, if they’ve been saying yes despite meaning no and then cancelling or not showing up, or if they’ve been saying no while silently wishing they could say yes, then I can’t exactly expect direct communication because it hasn’t been happening thus far.

If that sounds harsh, keep in mind that I’m calling out myself as much as (if not more than) anyone else, because I’ve also done all of these things. And yes, I did them because of chronic illness, and that’s valid. But I still don’t get to expect people to read my mind.

This is why advice columnists like Captain Awkward often encourage people to “use their words” and be clear with friends and partners about what they need, even–especially–if they have a mental illness. (That mental illness makes something more difficult to do doesn’t make it any less helpful.) “I would like you to keep inviting me even though I say no because it makes me feel included” is a valid request. “I want to see you but I’ll often have to cancel because of my illness” is a valid reminder.

In general, we tend to over-estimate the degree to which our internal states and motivations are obvious to people. It’s not necessarily obvious to your friends that you appreciate their efforts to reach out or that you wish you could see them, especially not if your friends struggle with depression and the self-doubt that it brings.

Somewhat similarly, many of my friends in the chronic illness community have been trying to normalize the idea of extremely asynchronous online communication, where you might initiate contact or answer messages from people very rarely even though they’re still very important to you. So I might message you and you might not answer the message for weeks or even months, but I’m still meant to know that you care about me a lot. And similarly, I get it and it’s very appealing. We’re busy. We’re sick. We’re pioneering new ways of staying connected that work for us.

But at the same time, when I see these memes about “I still care about you even though I never talk to you, see you, or otherwise give you any evidence that I even remember you exist,” I can’t help but feel incredibly invalidated. It hurts when a close friend suddenly all but drops off the face of the earth, barely answers my messages, never initiates their own. It only adds insult to that injury when I’m told that I’m supposed to just assume that they still love me and care about me despite doing nothing to show it–with the added implication that if I feel rejected or ignored, it’s my fault for not knowing how much they “obviously” care.

To be clear, it’s not the idea that someone might need to avoid people for a while that bothers me. Not at all. It’s the idea that I, a person being avoided with no explanation, should just pretend it’s not happening, keep my own behavior unchanged, and not feel bad about it.

That they probably have Valid Reasons for disappearing doesn’t make it hurt any less, and at that point, the healthiest thing for me to do to deal with my own feelings is to mentally write that person off as a close friend until they give me a reason to reassess. And they often do, and I’m always happy to have them back in my life. But in the meantime I don’t think about them much and I don’t count on their friendship or support. That’s healthier for me because it helps me manage my expectations and prevent disappointment. For all I know at that point, they don’t really care or remember me, and I learn to be okay with that.

I try to base my models of other people’s minds on what they communicate to me, not on what I wish or hope is true. If someone is not accepting my invitations, not answering my messages, and not otherwise acting like they want me to be in their life, it seems laughably naive to just assume that they do.

And sure, “friend” can mean many things and if we’re talking about a very close friend who is suddenly very distant, it might seem unfair for me to just assume that they don’t want to be friends anymore.

On the other hand, if they don’t want to end the friendship, it’s also kinda unfair for them to distance themselves without any explanation and expect me to feel like nothing’s changed. It’d be nice if we could all read minds and I could just know that they don’t have spoons for socializing right now or their anxiety’s been bad or whatever. But I don’t know that, and “Why haven’t you been answering my texts” is an awkward-as-hell question to ask. It’s not at all easy to tell someone that you need to be distant, either–I get it. But if you’re concerned about how they’re going to interpret your distance, it might ultimately put both of you more at ease.

On the outside, “I’m chronically ill and silently hoping you keep trying to include me even though I always say no” looks remarkably similar to “I really wish this pushy person would take the hint and stop trying to get me to hang out with them.” I never want to risk being that pushy person. I don’t know what’s in your head unless you tell me.

I don’t like advice that sounds like “ignore the signals people are sending you.” I also don’t like implying that struggling people shouldn’t expect any support they don’t explicitly ask for. There’s room here for unspoken understandings that develop between friends and partners over time. There’s room, too, for the acknowledgment that unspoken understandings can easily turn into misunderstandings, and sometimes you need words.

In that way, posting all these memes, as cognitively dissonant as they make me feel sometimes, is a great thing to do because it lets people know that they can keep initiating contact with you despite a lack of reciprocation. It’s a pretty low-cost way of communicating that, too.

I can proclaim the virtues of direct communication all I want, but the truth is that sometimes we don’t have the spoons for it or we don’t trust each other enough because we’ve been burned too badly in the past. So there may not always be a way to resolve the tension between supporting a friend with chronic illness who always says no or avoids you, and respecting that person’s unstated boundaries. I hope that talking about this tension more, though, will make it easier to navigate.

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These two pieces may be useful to folks working through these issues: Some Advice on Supporting Friends with Depression & Reaching Out for Support When You Have a Mental Illness.

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When Including Friends with Chronic Illness Feels Like Ignoring Boundaries
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