Grief is an important topic when you or someone you know has chronic illness. Grief is the complex emotional response to loss, and there is a lot of loss to mourn with chronic illness. One of the reasons it can be so difficult to make sense of grief in this circumstance is because there are so many different types of loss, all interwoven and with differing degrees of social acceptability. 

I will try to unpack the losses, so that perhaps you can make better sense of yours, or that of a loved one. The first is the one that we all have a chance at understanding, the loss of the life we once knew and the things that no one told us were privileges – independence, clear thinking, spontaneity. The chronically ill often experience a loss of self. Life as we knew it has gone, and the falling away of good health is like a bridge crumbling beneath us.

To take this a step further, chronic illness also steals away our anticipated and planned future all our dreams and everything we were working towards; a career, a family, travelling. The change in our relationships and the unexpected disappearance of what we had considered were lifelong friendships. 

There are two other types of loss to articulate here. I would class the absence of prognosis a type of loss. People with chronic illness do not have certainty; there is an absence of the ground under your feet in knowing which direction to head in, how to find healing and how long recovery might take. This ambiguity can intensify grief, making it challenging to find closure or fully articulate the feelings of loss.

And what about your identity? All the things that make a person – their art, their devoted support of loved ones, their dedication in their career, their reliability – are stripped away. Throughout all this loss, all our previous coping mechanisms are no longer available to us! Exercise, dance, writing, going for long walks. We’re left exposed to grief with limited escape.

In summary, expect chronic illness grief to be vast and overwhelming. It’s painful but justified. This might be the biggest challenge of your entire life, and wrapped up in a horrible, gaslit package. There are a million and one influences that threaten to undermine the validity of your grief, so please take it from me – you are not overreacting. Take your grief seriously, as we would for anyone with a more visible illness, or a more ‘socially acceptable’ cause of grief.

It can help to talk through some of the different models of grief and bereavement. The most well-known is probably Dr Elisabeth Kubler-Ross’s model of the five stages of grief, which proposes that an individual will go through a grieving process which includes each of the five stages of denial, anger, bargaining, depression, and acceptance. These aren’t necessarily experienced in a linear fashion, and some people may skip certain stages altogether. There are numerous other models, some that recognise that grief comes in waves, and the intense emotions attached to that also fluctuate, contradict, and overlap.

Dr Lois Tonkin proposed a different model called “Growing Around Grief”, and given the unique challenges of chronic illness, this one always appealed to me the most. This model of grief doesn’t assume that the grief will go away, which is important in this context, because some level of prolonged grief may exist for the duration of the chronic illness. The picture below demonstrates Dr Tonkin’s model:

The premise is that at first, all we feel is the deep emotional tangle of grief, but instead of ‘getting over’ or ‘moving past it’, we instead learn to grow around it. We build connections to the loss, perhaps revisiting certain aspects of our grief at different times, and don’t necessarily ‘complete’ cycles in a set sequence. It isn’t something we can ignore or suppress, instead we need to find ways to support living with it and respect that it will need to be heard and soothed.

As we process grief, we incorporate it into our lives, like a tree growing around an obstacle. Over time, we rebuild and grow around it, even if that looks different to our lives before the chronic illness.

Here are five things to think about when processing your grief, all tried and tested by yours truly:

We can be gaslit into thinking that chronic illness isn’t much of a big deal. It’s like a cold, right? Who wouldn’t just love to stay in bed all day? Don’t internalise the gaslighting; make sure you take your grief seriously. Chronic illness is a serious beast, and its impact is substantial. Give yourself permission to take this grief seriously and consider getting yourself some professional backup. A counsellor, a therapist, a support group, even a regular conversation with an empathetic friend. Put in regular support. Even just knowing it is there can help.

This sounds over-engineered, but as you start doing it, it will make much more sense. Set aside 15 or 30 minutes every few days or once a week (or even every day if you’re feeling overwhelmed) and use this as dedicated grief time. Curl up in bed with a box of tissues and let yourself mourn these losses. Your grief needs an outlet, and giving yourself dedicated time can help the rest of your day feel lighter.

Whether you’re having dedicated ‘grief time’ or you’ve just been really struggling with intense emotions, always follow them up with self-soothing. This teaches your body to feel safe expressing emotions, but it also helps you to refocus on other things. How you self-soothe will be personal to you.

Imagine when someone else soothes you, what is it they do that is comforting and calming? Perhaps speaking in a soothing tone of voice, saying comforting things, perhaps a warm hug or wrapping you in a blanket. Try doing that for yourself. Find a sentence or two that settles you, like “I’m going to love myself through this” or “I can get through anything” and say them softly to yourself. Wrap up in a big fluffy jumper, cuddle with a pet or get on the business end of a pack of Oreos. And never underestimate the comfort of a plushie or teddy bear.

One of the reasons I like Dr Tonkin’s model of grief so much is that there’s no pressure for grief to be ‘done’. People around you might stop asking, or assume you’ve had your allotted ‘grieving time’ before you should be fine again (isn’t it weird how people do that?), but don’t put that pressure on yourself. Let yourself figure out how to process and live around your grief in your own time. Guilting or shaming yourself into being ‘over it’ won’t stop that aching in your heart. 

Chronic illness is extra nasty because it takes away your coping mechanisms and ability to distract yourself from uncomfortable emotions. You might not be ready for this thought, and there’s no judgement if you’re not, but managing a chronic illness will become easier as you embrace each and every one of your emotions. When you feel that grief, wait a moment before distracting yourself. Turn inwards and notice how it feels, where in your body you feel it. Breathe gently in and out, and stay present with it. Allow it to be and allow it to fade. Don’t push it away, and don’t get swept up in its tornado. Let it rise, and let it ebb. 

Personally, grief made me hysterical for about two years. Two years of frantically clawing at the edges of the cliff I’d fallen down. I was full of anger, despair, and fear, which made me tough to be around. I wasn’t able to take pacing seriously for a long time. One time I actually lay down on the floor of my counsellor’s room and sobbed for the full hour, and that was actually one of the most cathartic things I ever did.

Once the overwhelming madness of my grief became more manageable, it was like learning to live next to it. Like lying down next to a stream, knowing that some days it will be a river, and other days it will just be a gentle trickle of water. As it became more familiar, I could recognise the days when it was a river and know that I should step up my self-compassion or ask for the support that I needed to live through it. Give yourself time and space to be able to feel sane with your grief, then begin your growth around it.

That’s all from me for now. As always, we experience and process things differently, so take what you like and leave what you don’t! Please take your grief seriously, don’t allow the gaslighting to stop you from finding ways to validate and process your emotions.

• Grieving for my old life after a chronic illness diagnosis
• How to move forward when you are grieving your life before chronic illness
• How you can cope with chronic illness