A type of grief that I don’t often see discussed is the grief that comes with being chronically ill. Chronic illness is a tricky thing to navigate, because one of it’s defining features is unpredictability. Managing an illness that is ever-changing and ongoing is draining, difficult and tinged with grief.

If you are chronically ill, you may feel isolated in your grief, or find it difficult to discuss. This may be because the people in your life don’t fully understand your experiences, have underlying ableist beliefs or simply because you feel too ashamed and scared to share. This can leave you feeling as though you need to manage the big feelings alone, and you might struggle to understand some of the ways that grief begins showing up.

Grief for a past version of yourself

Whenever we experience a loss or big personal change, it’s common to feel grief for what has been lost. Often we can feel a sense of grief for the person we used to be before things changed. It’s normal to feel sadness at the ways your world has changed or for the things you can no longer do. You might also feel a sense of longing for the person you once were, before things changed. You might find yourself searching for ways to bring that version of yourself back into the present, to find small ways to feel like yourself again. This can be an important step in integrating your past self into the present and accepting your identify as it is.

Grieving stability

Something that can be absent in the face of chronic illness is stability. If your illness is dynamic, you’re likely to have days where you feel pretty good, followed by others where you can’t get out of bed. This can make it very challenging to plan ahead. Whether it’s committing to a night out with friends, or trying to decide on bigger plans for the future, there’s always the knowledge that things may have to change at a moments notice. On the one hand, this can build resilience and flexibility, as you get more resourceful in adapting to your changing needs. On the other, it brings with it disappointment, guilt and sadness.

You may feel longing for a time when things were simpler, when you could make plans and feel quite confident that they’d go ahead. You might also feel grief for friendships that have dwindled as friends who don’t understand your needs hesitate when inviting you to things. When you find yourself constantly having to adapt to changing needs and circumstances, it’s fair enough to wish for things to just stay still for a little while. Talking through these feelings of anger, frustration, sadness, guilt and grief can allow you to process them, and hopefully find some degree of acceptance for the way things are.

Grief for the future

When you’re chronically ill, especially with a progressive illness, there can be a lot of fear around the future. When you have a good day, you dread the next bad one. When you have a few bad days in a row, there’s a lingering fear that perhaps this will always be the way. If you notice that your capacity has changed, you could feel frightened that this change will be permanent. It can be heartbreaking to wonder what the future holds, and whether it’s worth hoping for more good days.

You might also need to re-evaluate some of your plans for the future. Chronic illness might change where you are able to live, the kind of work you might be able to do or whether or not you have children. You might feel angry and hurt to consider that you may not be able to live the life you’d always dreamed of, or that you may have to make some significant modifications to your ideas of what the future might look like.

Talking through these feelings can be really helpful. It can allow you to see perspective, and feel seen and heard around difficult emotions. You might also have an opportunity to speak aloud some of the things that have been scaring you which can reduce the fear that you feel about them. Speaking to a counsellor can also be a good way to work through your options and find a way to move towards a future that you want, even if it doesn’t look exactly like the one you’d been planning.

Chronic illness and grief often go hand-in-hand, and it can be really isolating if you feel like nobody understands you. A grief counsellor like myself can provide a safe, non-judgemental space for you to talk about your fears and sadness and feel heard and supported throughout.