Why Having A Chronic Illness Feels Like Grieving

When we think about grief and loss, we often think about the loss of a loved one. But we can experience grief and loss in many different ways, such as loss of identity, friendship, or job loss. Grief is an emotional response to a loss or significant or unexpected experiences that change our lives in some way.

We may not realize we are grieving a loss, especially if it is a loss that society deems not socially acceptable to mourn or is not recognized as valid (aka disenfranchised grief). If you are living with a chronic illness, you may be familiar with grief and loss all too well.

What You May Be Grieving: Common Losses

Some common losses those living with chronic illness experience:

• Loss of physical ability and bodily function
• Loss of autonomy, independence or freedom
• Loss of social connections (loss of friendships, challenges with dating, withdrawing, etc.)
• Loss of career opportunities or financial stability
• Loss of future plans and life goals
• Loss of identity and sense of self
• Loss of trust in yourself, your body, or others (loss of trust with the medical system or medical professionals)
• Loss of control and predictability in daily life
• Loss of hobbies or activities you once enjoyed
• Loss of purpose and meaning
• Loss of missed experiences and events

The Challenges of Ongoing Grief

One of the biggest challenges of living with a chronic illness is that there is no endpoint. The losses can be compounding, changing and ongoing as your chronic illness changes or progresses. You may experience periods of symptom flares or new symptoms. Or, you may experience periods where your symptoms lessen and bring glimmers of hope, but it may be fleeting.

The Unpredictability Factor

The unpredictability of living with chronic illness can be frustrating and challenging. There is also the grief of navigating the constant balance of missing out on things and pushing yourself beyond your limits, not to miss out or disappoint others. It is the constant mental load of assessing what you can miss or skip to be able to do the thing or event you want to do, while also ensuring you have enough time to recover in between.

The Compounding Effect

If you have a chronic illness that is constantly changing or progressing, the grief can be compounded. Chronic illness can change your daily life, your future plans, and how you move through the world. These changes can also continue to change in new or different ways, such as new symptoms popping up or losing the ability to do things you normally do.

It can be difficult to keep up with the changes and the grief of feeling your body isn't your own or working against you. The constant changes can create a domino effect of new and old waves of grief.

Social Challenges and Misunderstanding

Two other challenges that often create the greatest grief are relationships and societal judgments. Dynamic (always changing) or invisible chronic illnesses can be challenging for others to understand. The complexities of chronic illness are often misunderstood, and this can lead to judgments or comments that aren't helpful.

Have you ever been told that you don't "look" sick or that you seemed "fine" yesterday? On the other side, have you ever been told to be more positive or grateful? In both cases, these comments can invalidate your lived experience and make you feel misunderstood or alone.

Why Naming Your Grief Matters

When we don't acknowledge or make space for our grief, it can manifest in other ways we may not realize. Grief that is left unattended often fuels emotional distress and can show up as irritability, anger, anxiety, depression or resentment, for example.

Physical Impact of Unprocessed Grief

Additionally, the physical effects of grief can also interfere with or worsen preexisting symptoms. Research shows that some of the physical effects of grief can include:

• Insomnia and sleep disturbances
• Muscle pain and tension
• Fatigue and exhaustion
• Memory challenges and brain fog

The Power of Acknowledgment

Being able to acknowledge and name the grief and losses you are experiencing allows space for compassion and building healthy coping skills. By naming your grief and loss experiences with chronic illness, it also allows others to better understand what you are going through.

Grief is heavy, and you deserve somewhere to put it down.

What You Can Do About It

Make Space For Your Grief

Take small steps to make space for your grief and sadness. Acknowledge when you are having feelings of grief, whether about your symptoms, the life you thought you would have, or missing events. Allow yourself space to:

• Cry when you need to
• Write about what you're experiencing
• Vent to trusted others
• Sit with the sadness without trying to fix it

Feelings last for roughly 90 seconds if you let them be as they are; rather than resisting, allow the wave of sadness to exist.

Seek Support

Navigating chronic illness on your own can be challenging and isolating. Find support in spaces with others who are also experiencing something similar to what you are, such as:

• Support groups (in-person or online)
• Online communities for your specific condition
• Professional counselling to explore and process grief

Counselling can help you develop coping skills and tools for navigating not only grief but the complexity of chronic illness.

Practice Gentle Boundaries

It can be helpful to assess your current spaces and relationships. Consider these questions:

• Where might you need to set boundaries?
• Are there spaces or people that diminish or invalidate your experiences?
• Do some people try to push toxic positivity?
• Do you need to set limits or say no to others' unrealistic expectations?
• Are you pushing yourself beyond your limits to not disappoint others?

Finding New Meaning

Living with a chronic illness can be all-consuming, and it can be hard to remember who you are outside of your illness. It can help to reclaim parts of yourself and your identity beyond your illness.

Explore the parts of you that aren't your illness:

• Focus on what you can do
• Identify what still brings you joy even if it looks a little different
• Reconnect with core values and interests

Integrate Mind-Body Practices

Somatic (body-based) therapies and practices can help process grief and manage symptoms. If you are looking for something that goes beyond just talk therapy, consider approaches like:

• Somatic Experiencing sessions
• Somatic Touch sessions
• Mindfulness and meditation practices
• Gentle movement therapies

Want to Work Together?

If you are struggling with the grief of your chronic illness, I offer grief and loss counselling in Kelowna, British Columbia. Reach out today if you are curious about working together.

Book a complimentary consultation call here.

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Disclaimer: All blog posts are for educational purposes only. The information provided is not meant as a substitute for counselling.