Chronic Illness Grief
- Emily Duffy
- 3 days ago
- 7 min read
This is such a huge part of chronic illness, as it can feel like you're losing parts of your self as well as who you thought you might be, so lets try and break it down.
What is chronic illness grief?
Grief is a process that we experience when we have a loss, in most situations this loss tends to be tangible and physical with a definitive end i.e. the loss of a loved one is definitive even though that grief stays with us, the loss doesn't change, however with chronic illness it can be seen as an ambiguous loss as it doesn't have a clear ending but it can also be an ongoing process as our chronic illnesses and bodies change through life.
Chronic illness grief can be complex, it can be:
The loss of our body as we knew it. We may no longer be able to do things we once could and envisioned for ourselves. For me, exercise was such a big part of my life, but developing my chronic illnesses I have become exercise intolerant and this has been such a huge loss for me.
There's also the loss of predictability of our bodies too. Chronic illness can be unpredictable and dynamic. Each day can be different in how our symptoms show up and the impact they have. So something we can do one day, we may not be able to do the next. There can be a sense of ongoing grief with this and feeling unreliable or flaky to those around us.
A loss of identity. Identity can be something that many of us take a while to figure out and then chronic illness can change our relationship with these parts of ourself:
If you're queer, you may no longer be able to participate in events like Pride and feel that a part of your community or expression has been taken away from you.
With non-monogamy or sexuality there can be a loss in being able to express this. It may mean not having the capacity to attend kink events or be polysaturated (no capacity to date anymore people than is at current) even though the desire and want is still there.
For neurodivergent folx it may mean having to yet again learn how your body works. It may mean a loss in coping skills that you previously developed due to a change in how your process and may need extra energy in order to function and mask outside of safe(er) spaces. This may also mean you're not able to mask as much as you once were which can be a loss in your sense of safety.
This can also then come into our bodies not allowing us to stim in the same ways anymore, or our stims having a much bigger impact on our bodies than they did before.
For anyone it can change our relationship with our self and how we see our bodies which may be a loss in confidence and sense of self. Even just feeling more uncomfortable in your own skin can feel like a loss.
If you're an activist it can mean no longer being able to participate as intensely as you once did which can be a loss in itself but bring on the pressure of how you feel you "should be".
For anyone it can impact how we are in relationships with others:
Maybe it means not being as energetic and spontaneous as you were which can change the dynamic in relationships
Maybe it means not being able to be sexually active as much which can put a strain on sexual and romantic relationships as well as be a loss to how you see yourself.
Maybe it means having to have reasonable adjustments at work and seeing how your capacity changes in the workload you can manage or how you handle things. This can change your dynamic with colleagues.
There is the grief of the person we thought we would or should be, as mentioned in some of these above, but just in general. Chronic illness changes the trajectory of our lives, for better or for worse!
Medical grief. This can be compounded over time with the many dismissals many of us face. The medical system has been shown to be male centered and bias against the global majority and those of us living in bigger bodies too and so often we don't get access to treatment or even investigations as quickly and effectively as other might.
There can also be a grief in the loss of trust in the system that comes from all of this too.
Energy/capacity grief. This is kind of the grief we feel in our bodies, but having a chronic illness often means gaining a lot of medical admin and losing some of your energy, so it can feel like we have more to be responsible for with less capacity to do it, as well as all the other responsibilities we still have and the wants we have too!
The grief can feel huge and all consuming with all of the above, but it can also be in smaller moments too. I remember feeling this when I first dropped a saucepan when cooking. Thankfully nothing was in it yet!! But there was a wave of grief that cam over me because I no longer felt as functionable, competent, and altogether as I once did. Some of this is internalised ableism and my inner critique, but the loss was still very real.
What might Chronic Illness Grief look like?
In general, grief is a messy process. It looks different for everyone and can change for the loss you experience too. Grief isn't linear either, it can feel heavy and crushing one day and then feel much lighter the next. It can hit you unexpectedly and in waves as mentioned above without any warning and over the smallest of things, yet still be valid.
Chronic illness grief is no execption to this.
I quite like the dual process model of grief for how it can look:
It can look like:
Cancelling more events because you want to withdraw
Not wanting to ask for help
Putting pressure on yourself to continue doing more than is within your capacity
Being irritated with those around you because they are able to carry on as normal
Anger at the universe for how your life has changed and not being in control of it
Fear of the future and how life might look and change
Anxiety and fear of being a burden to those around you
Negative self-talk and putting yourself down
How to cope with chronic illness grief?
There are many ways to cope and manage this grief process. Unfortunately, it isn't something that can necessarily be avoided or gotten rid of, as it is a natural human response to a really impactful situation, but there are absolutely ways of coping with it all.
Community - For me, community has been a big help in understanding my chronic illnesses but also in coping with them and normalising them too. Most of this has been online, and there are many ways of accessing community online, but it can also be in person too with support groups. This can also help in terms of coping with the sense of identity and loss of self as often there are overlaps with chronic illness, ND (neurodivergence), and GSRD (gender, sexuality, and relationship diversity).
Compassion and self-talk - Trying to challenge that ableist and critical voice that keeps telling you, you "should" be doing X, Y, Z or you're "less than" because of your chronic illnesses, because frankly they're spouting bullshit! (Yes, the critical voice is something we all need as it helps us self-assess and grow, but when it's purely being derogatory and hateful we don't need that energy). And so, looking at how you can talk to yourself more compassionately can be a game changer. It acknowledges the heaviness and crappiness of the situation, it still holds you accountable, but it also helps you look at how you can be kind to yourself too. The most overused (and for good reason) way of doing this is thinking about how you might talk to a child, pet, best friend, loved one, etc. - OR how your therapist might talk to you - in this situation and then trying to internalise that voice.
Acceptance - ACT (acceptance and commitment therapy) is a third wave approach from CBT, but it is really great for looking at coping with chronic illness. In a very over generalised explanation, it looks at accepting the situation with kindness, and then how you can move forward with it.
Pacing - Adjusting to your new normal and capacity levels. So many of us with chronic illnesses struggle to slow down, but often this is something we do need to do in order to stop or reduce ourselves flaring up, as flare ups can bring on grief too.
Symptom management - Things like ice/heat therapy, physio, epsom salts, naps, medication etc. to manage symptoms and reduce the day to day impact can help manage grief too as it can help alleviate that feeling of being burden (even though YOU yourself are not a burden, but everything the chronic illness brings can be).
Body Neutrality - Being able to look at your body and accept it with neutrality rather than negativity or positivity as this can be much easier to access. It can help with acceptance, self-worth, and how we talk to/about ourselves too.
Talk to those you trust about how you feel. This can help bring some closeness when you're feeling like withdrawing and help with feeling accepted by others rather than a burden
Journaling - having a space to write out what's going on for you, your emotions, and your process can be helpful to remove it from your head and put it elsewhere. It can also be helpful to see it written in front of you as it makes it more validating. Sometimes this can make things feel more real, so do leave some space for something kind afterwards, other times it may help put things into perspective and make them feel less overwhelming.
Talk to a therapist
Want to know more about how to cope with grief in general as well as resources? Check out my post here.
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