Abled people explain things to me: chronic illness and grief

Part three of our series on ablesplaining tackles the connection between chronic illness, unsolicited advice and grief
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Chronic illness and grief - collage artwork of a baby screwing its face up wearing a plastic rainhat. A rain of unsolicited advice comes down on its head from a cloud containing the words: 'you should really try'

Unsolicited advice sucks. This can be hard for an abled person to understand. To make life easier for everyone, I’ve been explaining why it’s bad (with input from the Spooniehacker community) in a series of columns. In part three, I discuss a further reason not to give unsolicited advice, which is…

Chronically ill people are often grieving

Those of us with chronic health conditions are surrounded by people telling us how to manage our lives. The topic of conversation it seems abled people love most is what we’re not – and should be – doing to fix things. Often these conversations revolve around our attitudes and thoughts. Illness is a state of mind. Are you making yourself ill just by worrying about it? Reframe that negativity, because maybe that’s the real problem here.

One thing very few of those people are willing and/or able to do is acknowledge grief.

Chronic illness, because it comes with suffering and loss (loss of your former life, sense of self, hopes for the future, financial stability, relationships, self esteem, social status, and so on) causes grief and anger. This is so entirely normal and human it’s bizarre to me that we have such problems as a society admitting it. However, grieving is complicated in chronic illness for many reasons.

Factors that complicate chronic illness grief

  1. Medical gaslighting: Also sometimes known as ‘institutional disbelief’, this is when you’re repeatedly told by medical professionals (and other people in authority, like benefits agencies) that your symptoms are not real, until you start to question your own experiences and sanity. This affects your ability to grieve because how can you grieve something that isn’t happening?
  2. Fluctuating symptoms: When you have good health patches that can (in my case) last for months, it’s very easy and natural to start to believe those patches might last for ever, encouraged by a society that’s constantly pushing you to ‘get better’. And when those good patches end, that plunges you back into a whole new grief cycle.
  3. Uncertainty around diagnosis/treatment/prognosis: Again, when you don’t really know what’s wrong with you, and when the whole world is throwing messages at you that it’s fixable (even if just with Cognitive Behavioural Therapy and kale smoothies) it’s also very easy to never truly let go of the idea that one day you’ll get back to your old life. The right diagnosis, the right treatment, the right diet, the right attitude, is just round the corner, always, and therefore you never truly get to face your grief. It becomes a stalled process.
  4. Ableist messages about what disabled people have the right to expect from life: As we have seen during the current pandemic, the belief that isolation, poverty and even early death are to be expected for disabled people is alarmingly widespread. If we simply aren’t entitled to good lives like the non-disabled, then we don’t really have the right to grieve those losses either.

As a result of all of the above (and more), chronically ill people can end up stuck in grief that doesn’t ever really go away, with nowhere to take it or talk about it, sometimes not even realising grief is a legitimate reaction. And when grief is unaddressed like this, it can become a very tender spot to touch.

I have never in 15+ years of chronic illness been told by any health professional, friend or family member that I may be, or should be, or am allowed to be, grieving. No therapist that I have seen has ever even said that word ‘grief’. But my grief is oceans wide. Not just for the loss of my former life, sense of self, hopes for the future, financial stability, and so on, but for 15+ years of being told that there was nothing wrong with me and it was therefore my own fault, with the result that I – of necessity – detached from the experiences of my body and my brain and became, looking back, a ghost in my own life.

Finding no space for your grief

It took me a very long time to name that word ‘grief’ as something I was experiencing, but once I did, I started to try to find out more about it. There is a fair amount of literature out there on grief (although not specifically from a chronic illness perspective that I have found so far).

I found The Wild Edge Of Sorrow by Francis Weller useful, which discusses at length the necessity of a community context in which to grieve properly, and suggests that modern Western societies barely offer this to anyone. And It’s OK That You’re Not OK by Megan Devine, which focuses on how badly our culture deals with death (particularly the untimely kind) showed me parallels between chronic illness grief and other unexpected griefs. Devine wrote the book after the tragic death of her partner Matt, and the book contains some shocking examples of unsolicited advice given to Devine by people who knew no other way to deal with the tragedy than to shut any mention of it down.

When this shutting down happens to you repeatedly – or when there’s nowhere you can even mention your experiences – the grief about it doesn’t just disappear. It’s always there, just under the surface, and sometimes unsolicited advice can unearth it painfully. For me, this type of ablesplaining tends to come from people I believe I am close to, or in spaces that are in some way supposed to be emotionally safe.

I can still remember vividly an incident about six years ago, at a supposedly inclusive event in which we were constantly encouraged to practice vulnerability and openness in order to build intimacy and community. In that context I ventured a sentence or two about what it’s like to have a condition that constantly fluctuates, and how dangerous it feels sometimes to enjoy the good days, when they could end at any moment. I was told abruptly by one of the group facilitators to practice gratitude so I wouldn’t feel that way. I had touched on my grief, tentatively, because I thought it was OK, but it turned out it was not. As always, some griefs were acceptable, others silenced.

Ableds are scared of chronic illness

Megan Devine says of similar experiences:

My experience of blame and judgement, both for my grief and of Matt in regard to his own death, is not unique. Most grieving people have felt judged and shamed inside their pain. Especially when the loss is unusual, violent or accidental, the backlash of blame is intense: we immediately point out what someone else did wrong. It soothes our brains, in some ways, to believe that through our own good sense, we, and all those we love, can be kept safe.

Chronic illness – the kind that takes everything from you and can’t be explained or cured – not only causes grief and fear and confusion in the sick, but in the abled too. If you’re abled, how would you feel if you suddenly couldn’t rely on your body? What effect would it have on your life if you didn’t know whether you’d be able to walk tomorrow morning, or talk, sit upright or eat? What would happen to your job, family, finances, life?

If it could happen to someone else, it could happen to you. And given how common chronic illness is, it’s actually quite likely to happen to you at some point. And it’s much easier to assume someone is suffering because they forgot to subscribe to Goop than to accept the frightening fact that sometimes, life is just bloody unfair, and people get ill.

Stop doing this. Chronically ill people are never to blame for their conditions, and they are already doing everything they can to get better – if that’s even a possibility for them. Confront your own mortality rather than projecting your fear onto spoonie friends, please. You can almost guarantee your friend has already made a start on that work.

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If you’re chronically ill and something has helped you deal with chronic illness grief, let us know in the comments.

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In part i of this series we gave you the ablesplaining basics.

In part ii we talked about Men Explain Things To Me, the essay by Rebecca Solnit that inspired this whole series.

In our final article we’ll suggest some ways to communicate about chronic illness that help rather than harm. Sign up for the Spooniehacker newsletter to find out when it goes live.

2 thoughts on “Abled people explain things to me: chronic illness and grief

  1. Thank you, this is a conversation I have tried to have with SO many people, Friends, Former partner, Family etc. People just can not get that we can be mourning our former lives when we still breathe. This is a monumental piece for me, just as so many medical staff are unbelieving in our invisible conditions, our Grief for ourselves is very real.

  2. Thank you so much. This one seems to have really resonated with people. If you have any suggestions of books you have read on this topic (or other things that helped) we would love to hear about them.

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