Understanding Ambiguous Loss
When we think about grief, we often associate it with losing a loved one. But loss isn’t always that clear-cut. Chronic illness can bring a different kind of grief. It is a kind of grief that lacks closure, and one that Dr. Pauline Boss calls “ambiguous loss”. Ambiguous loss describes a type of grief that occurs when something or someone is lost in an unclear way.
For those living with chronic illness, the loss isn’t always tangible. There tends to be a persistent sense of something missing. Chronic illness loss can include loss of health, energy, independence, or the ability to engage in life as before. This grief can be confusing because it doesn’t follow typical mourning patterns, yet it is real and deeply felt.
The Hidden Grief of Chronic Illness
Chronic illness brings profound changes, many of which are considered “invisible” and unseen by others. The losses are ongoing and unpredictable, making it difficult to process or move forward. Here are some common ways ambiguous loss shows up in chronic illness:
Loss of identity and self-esteem
Chronic illness can shift your sense of self. You may feel like you’ve lost parts of your identity that were tied to certain abilities, dreams, or roles. Maybe you have experienced difficulties with your job, position in your family, and feeling good about yourself and your worth. Some people with chronic illnesses try to “pass” as healthy, which can be an additional barrier to full acceptance of the situation.
Loss of control and certainty
Chronic illness is unpredictable, bringing good and bad days without warning. It can be hard to make plans and feel secure when symptoms require constant adjustments. Financial strain can also contribute to a sense of lost autonomy and control.
Loss of connection
Illness can affect how you communicate and connect with others. Chronic illness can easily become the main topic of conversation, or on the opposite end, avoiding the topic all together and not discussing it at all. Both of these approaches can lead to isolation. Friends and family might struggle to understand, and changing roles and dynamics can create additional tension, guilt, loss of autonomy, and misunderstandings.
Loss of goals and dreams
Dreams, goals, life plans, travel, and even career aspirations may need to shift. Unlike traditional grief, ambiguous loss lacks a defined “end.” There is no funeral or clear before-and-after. Instead, it’s an ongoing process of adapting to new realities while still longing for what was.
Emotional Responses to Ambiguous Loss and Chronic Illness
Living with chronic illness and ambiguous loss can bring a mix of emotions:
Sadness and longing
Mourning the life, identity, dreams, goals, and abilities that once existed, especially when new challenges arise.
Frustration and anger
Feeling trapped by limitations, misunderstood by others, or frustrated from constantly having to adjust to new challenges that arise.
Anxiety and uncertainty
You may worry about the future, finances, symptoms, and how the illness will shape your life and relationships. Being uncomfortable with the ambiguity of your illness, and having little tolerance for the ongoing chronic nature of your struggles.
Guilt and shame
It’s possible you struggle with the need for help, and not wanting to ask for it. You feel like a burden, and grieve the loss of your previous abilities and identity.
Loneliness and isolation
Feeling disconnected from those who don’t fully understand the daily struggles of chronic illness.
These emotions can be difficult to process, especially when the loss is not openly recognized or validated. One of the first steps towards healing is to understand that this is a form of grief.
Coping with Ambiguous Loss
While this type of loss may not be resolvable in a traditional sense, there are ways to cope and find meaning:
Acknowledge the grief and loss
When you recognize ambiguous loss as a form of grief, you are helping to validate your emotions, and lessen feelings of isolation. Grief and ambiguous loss are a natural response to ongoing change. If you’re experiencing ambiguous loss, you’re not alone.
Reframe identity
Instead of focusing on what you’ve lost because of your chronic illness, consider the core values, qualities, and strengths that remain. You might also discover new aspects of yourself that you didn’t realize that you had, like resilience, adaptability, and wisdom.
Create new sources of meaning
Adjusting to a new reality doesn’t mean that you’re giving up on joy, purpose, or fulfillment. Try and let go of old expectations, and embrace new ways of engaging in your life. For example, if you have physical limitations, you might explore new creative outlets, learning opportunities, or modified activities instead.
Practice self-compassion
Be kind to yourself in moments of struggle, just as you would be kind to a friend facing a similar situation. Chronic illness can bring frustration and disappointment, but self-judgment and criticism will only add to the burden. Acknowledge what you can do, even on the hardest days. By extending grace and love to yourself in these moments, you’re growing more resilient.
Find supportive connections
Living with chronic illness can feel isolating but you’re not alone. Support groups, therapy, or talking to trusted loved ones can help to ease the emotional burden. Even if someone doesn’t fully understand, sharing your journey with a compassionate listener can be healing. You might also find new hobbies that support your overall wellness, such as learning about photography, knitting, crochet, rock hunting, writing, nature, painting, fostering animals, or aromatherapy.
Engage in routine
Structure and routine can provide stability, as well as a way to help process grief and loss. Simple acts like journaling, reading your favorite quote or scripture, or creative expression can help process grief and honor change.
Find meaning and purpose
Turning pain into purpose can be transformative. Advocacy, mentoring, or volunteering can provide connection and fulfillment. You could facilitate support groups, share your story on a chronic illness community website, or even join fundraising efforts for medical research. Even small acts of sharing your experience with others can foster hope in others.
Practice radical acceptance
Acceptance doesn’t mean liking or approving of your illness. Acceptance means that you’re acknowledging reality without resisting it, wishing it away, or denying it. Identifying what can and cannot be changed helps redirect energy toward adaptation, resilience, and a meaningful life.
Moving Forward with Hope
Living with chronic illness means navigating both loss and resilience. While ambiguous loss is real and challenging, it does not define your entire experience. There is still space for growth, connection, and new possibilities. Healing doesn’t always mean returning to what was. It can also mean finding peace with what is.
If you’re struggling with ambiguous loss, know that you are not alone. Seeking support, whether through therapy or community, can help you make sense of the emotions that come with chronic illness. Your grief is real, but so is your strength.
Thinking about Therapy?
If you’re thinking about starting online therapy to get help for navigating chronic illness and ambiguous loss, I’m here to come alongside you in your journey. Schedule a free 15-minute introductory call to learn more!
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Jen Shepherd, MSW, LICSW, LCSW, is a therapist and clinical aromatherapist in the Twin Cities. Through Shepherd Therapy, she provides online therapy for individuals in Minnesota and Wisconsin, specializing in integrative health, anxiety, trauma, recovery, and chronic health issues. At Shepherd Wellness, she offers professional consultation to mental health providers on incorporating aromatherapy into their practice.