Sage Garrettson (she/they) is a writer and advocate with multiple complex disabilities. She writes about chronic illness on her blog, Illness and Insight, which she co-created with her aunt Mariana in 2024. Sage has worked in international construction, massage therapy, wilderness education, and pool maintenance, among other adventures. She holds a BS in Psychology and is currently completing a Master’s in Social Work from the University of Maryland. Her debut essay, Grounded, was published in Breath and Shadow in 2025. She is currently an intern with What's Your Grief.
Chronic Illness and Grief
Chronic illness is a topic that is often overlooked in conversations about grief. Not only can managing a chronic illness be a grief experience, but it can also come with a whole host of secondary losses and make it harder to cope with death-related losses in our lives.
First, I want to note that when I talk about chronic illness, I mean it in the most expansive sense possible. There is no universally agreed-upon definition of chronic illness, and medical lists include chronic illnesses caused by disease, mental illnesses, neurodivergence, and even physical disabilities not caused by disease. So if you are wondering whether you belong in this group, you probably do! If you have a long-term health condition, you are entitled to both the identifier and the grief that comes with it. Here are a few terms that may be helpful to know.
Helpful Chronic Illness Terms
Invisible Illness
While some chronic conditions require a mobility aid or cause some visible physical difference, many chronic illnesses are not outwardly apparent. These invisible illnesses are often difficult to navigate because people are less likely to notice, believe, and accommodate them.
Dynamic Disability
Many conditions fluctuate over the course of weeks, days, or even hours. These dynamic disabilities can be challenging because it is difficult to plan a life around changing needs. People may not understand why you are “fine” one moment and need to use a wheelchair the next.
Degenerative Illness
Degenerative illnesses, like Multiple Sclerosis and Parkinson’s disease, are conditions that get worse over time. These conditions can be especially hard to navigate, as one adjusts to the life they are living while anticipating future losses and needs.
Types of Grief in Chronic Illness
Sometimes, the exact loss in chronic illness is hard to define. The condition itself is a source of grief, but there are also usually secondary losses that make things harder, such as loss of jobs, relationships, and identity. The following types of grief describe some of these losses.
Nonfinite Grief and Chronic Sorrow
Maybe you envisioned being able to work, and now you can’t; maybe you envisioned being independent, and now you rely on a caretaker. Maybe you saw yourself as an athlete, or a business owner, or simply a healthy person, and now you feel like that part of you is gone.
Nonfinite grief and chronic sorrow are both responses to ongoing loss. Chronic sorrow is related to loss of identity, while nonfinite grief is about losing the life you envisioned for yourself. They are both characterized by uncertainty, shame, and a sense of helplessness.
Disenfranchised Grief
Disenfranchised grief is grief that is rejected or dismissed by other people or society. This is common in non-death loss. It may be especially relevant in chronic illness, where the illness itself may not be believed or taken seriously, let alone the grief surrounding it.
Ambiguous Grief
Chronic illness impacts the way we experience our relationships. Ambiguous grief is the loss we experience when our relationships change. For example, a person may still physically be present, but they don’t feel like the same person anymore. You may experience grief over a relationship with someone whom you considered a support, who now doesn’t seem to understand your needs. The people around you might experience grief about their relationship to you as you change with your illness.
Anticipatory Grief
In chronic illness, we may experience not only the grief for our past selves and our current circumstances, but also anticipatory grief as we contemplate our futures with chronic illness and the losses that are yet to come. This may be especially true for people with degenerative illnesses, which will expand into new realms of life and cause potentially greater losses over time.
Cumulative Grief
Cumulative grief happens when somebody’s grief needs “have exceeded their capacity to cope and function.” Being chronically ill may impact our experience of other losses, such as bereavement loss, when our illness affects our ability to integrate and engage with these losses.
Tips for Coping with Grief in Chronic Illness
Practice Self-Compassion
Grief is a normal response to loss! It makes sense that you are feeling this way. You have lost so much. Practicing self-compassion can have a huge impact on your emotional and physical well-being. It may be helpful to think about two types of self-compassion (developed by researcher Kristen Neff). Tender self-compassion includes being kind to ourselves, embracing common humanity, and practicing mindfulness, while fierce self-compassion includes protecting and providing for ourselves and motivating change. This is especially important in chronic illness when we have to advocate for ourselves in medical settings or create systems to sustain our activities of daily living.
Self-compassion also includes how we care for our bodies. In chronic illness, we must take care of our bodies in whatever ways we can: resting when we need to rest, staying hydrated and fed to the best of our ability, and listening to cues that tell us when we need to take a break or seek support.
Develop a Disability Mindset
Most of the disability community considers disability to be a combination of living with a physical or mental impairment and being a part of a society that does not accommodate that impairment. Whether you define yourself as chronically ill, disabled, or both, it is important to understand that your limitations come not only from your condition but from the world around you. It can be helpful to realize that there is a community and a history of advocacy you can tap into to better understand your context and feel less isolated in your loss.
Find Your Community
A huge part of managing disability is finding the care and connection you need. Your relationship to community will almost certainly change with new illnesses and impairments. If you are someone who has always cared for others, it may be difficult to receive support. You may grieve the loss of not being able to provide in the ways you used to. Redefining care might mean understanding that what you have to give now takes a different form, or even that receiving care is a gift because it brings people together.
One of the greatest skills you can build in your grief is the ability to reach out. Even a short interaction with someone you care about can improve your mood. You may also benefit from a larger community of care. Virtual groups can be a good option when your energy or mobility is limited. Mutual aid groups in your area, neighborhood groups, peer support groups, or activity groups can all start to provide some of the community support you might need.
Honor Your Loss
One of the greatest challenges in a non-death loss is that we don’t acknowledge or address it. There are several ways to honor the losses associated with chronic illness. By reading this article, you are probably already working on the first component: acknowledging that you have experienced loss and are now going through grief. You can begin to understand the complexity of your loss by making a list of secondary losses from your chronic illness. Finally, it may be helpful to create a ritual to memorialize your loss. This can be something simple, like sharing memories with a friend of a time before your chronic illness. You could also plan something elaborate, like a ceremony to observe the loss on a dedicated day.
Get Creative
I mean this in two ways. First, find literal creative outlets. Make art, listen to music, try a new hobby. You may have lost some of the coping strategies you had before you got sick. Try to find new ones that match your current capacity. Second, get creative in your thinking. Being sick makes us rearrange our worldview. You have the opportunity to redefine your identity, your values, and your behaviors to fit the life you are living now. Coming at this with a creative, curious, and open mind will give you a chance to integrate change into your life.
Practice Dialectical Thinking
Dialectical thinking is holding two different ideas in your head at the same time. In chronic illness, it often looks like wishing things were different and, at the same time, accepting where they are. On the one hand, you may wish for a cure or seek out treatment. At the same time, you can look for meaning, health, and worth in your life exactly as it is now. It is saying, “yes, this sucks,” and “yes, there is still joy in my life.”
Redefine Hope
Hope is essential to finding meaning in our lives, but it can also be harmful. Harmful hope is both outside of our control and outside of the realm of possibility. If I have a chronic illness that makes it hard for me to walk, the hope of running a marathon in the next year might be harmful to me. This could be physical, if I try to train for a marathon and end up hurting myself, or psychological, if I feel like it is the only way to have a meaningful life and it is impossible for me.
A helpful hope is something within the realm of possibility. If I hope to feel less isolated in the future, that is probably realistic. I can take steps toward achieving that goal. With many chronic illnesses, it is hard to know what is in the realm of possibility. So the most helpful hope is the hope we can control in our lives as they are right now.
We invite you to share your comments and questions with the WYG community in the discussion section below.
