New Zealanders have a peculiar communicative trait, likely uplifted from the British. Our go-to phrase, on encountering someone we know, is to make a query along the lines of ‘how are you?’
It’s purely a verbal tic; no one wants to know the answer if it’s anything other than ‘good’, and that’s doubly so if the respondent is sick or has a chronic illness.
To be chronically unwell (I am speaking here primarily of my experiences, there are undoubtedly multiple variations and permutations that others face) is to be the problem child (I recognise this term itself is problematic, but bear with) that no one really wants to sit with.
You have limited energy; you can only play with others for so long before you flake out, or you can’t get yourself together enough to play at all. Eventually people, even your friends, stop throwing you the ball because you’re not as fun as you once were, or you frequently cancel plans at short notice.
You spend so much more time on your own, recuperating, and your life feels half-lived. You aren’t engaging with others as much, and if you’re introverted like me, you find you have less and less to talk about when you are out and about. No one is interested in how your illness manifests, or a possible new treatment option, or physical rehab, or how infrequently you are able to prepare nourishing meals, your nerves about an upcoming specialist visit, or how, despite mind-numbing fatigue, you cannot sleep. But these are the things that dominate your life; they are your life.
You try to gloss over how little you did in the weekend, or make excuses for not going to a gig you said you’d be at. You pretend none of this matters, and you’re fine not being able to do much. You spend your time at home watching Netflix and listening to the newest albums, reading the best books, in the hope they will give you something meaningful to talk about. But your brain fog settles in, and you can’t recall plots, characters or even band names.
If you’re in a bad patch, your attendance at work starts slipping. Others in your team are called on to cover you more and more. You feel terrible for letting them down, and apologise, even though you couldn’t help it. But as time goes on, the team mates who you once considered friends, stop being so happy to talk to you about anything, and the regular lunch dates dry up. You find yourself sitting alone on breaks more and more, and the cycle worsens.
You try to find activities you can do, social outings that you will have the capacity to attend, but still the isolation grows, because the effort of getting there exhausts you, and you aren’t the same as you used to be. You can’t drink as much, or walk as far, or you need to be home early in order to not be a wreck the next day. And you invest so much hope each time you go out that it will fulfill your social needs, because you are so lonely. And you sit at home, and read articles about loneliness and its implications.
Add to this, you’re in your mid-thirties, a time of life where everyone is more set in their ways, possibly more isolated and struggling to make new friends. Your old friends, the ones who still love you even though you’re a flake, have moved to other cities or countries long ago, and those that remain have kids and different priorities and minimal time to spend socialising.
Why is it that people are so unwilling to engage with the chronically unwell? Many of the answers can be found above. There‘s a lack of reliability, a lack of participation on the part of the unwell; and maybe a lack of understanding, empathy and knowledge on the part of the healthy. They don’t know how to engage with those who are unwell because we are so conditioned to only acknowledge the positive, and they stop asking how you are, because the honest answer is one too awkward to face.
But it’s more than that. After more than fifteen years of chronic ill health of varying degrees, I can see that people are afraid. To see someone who is unwell is a confronting experience. When that person has no clear diagnosis or prognosis, or timeline for ‘getting better’, it highlights all the uncertainties in life. The healthy person sees that the unwell one has a restricted life, that they struggle to keep up in the way they maybe once did, that they are isolated, and that they face an unclear future. Why is this so frightening? Because all significant physical and mental illnesses (chronic, acute and even fatal), so often seem to strike randomly. For the healthy, being confronted with the possibility that they too could become unwell is at the very least unnerving and unwelcome.
Chronic illness could be made less fearful a prospect if the healthy acknowledged their fears and awkwardness and took steps to reach out and support those around them.
Nearly half of my life has been dominated by depression and other debilitating chronic conditions. Finding the handful of people who still have time for me, even in my worst moments, are the ones who have made my situation easier to bear.
So if you can, take a moment to reach out to someone who has faded from your life somewhat due to ill health. Ask them, genuinely, how they’re going, and be open to hearing the response.
Because worse than being asked how you are with no expectation of answer is not being asked at all.