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The Grief and Loss of Living With a Chronic Illness

Getting diagnosed with a serious condition can cause a sense of loss. A psychotherapist – and fellow primary immune deficiency patient – offers her advice for processing these feelings and celebrating resilience.

Silhouette of a thinking woman

Grief in its most general definition is an emotional reaction to a loss or the experience of a significant or unexpected change in our lives. When we traditionally think about grief, we think
about the death of a loved one or the loss of a relationship. With this type of grief, the individual works through the grief, eventually accepts the loss, and moves forward having dealt with a common life experience that we must all eventually face.

People living with rare and chronic illness will experience grief and loss in a nonlinear way. There may be an identifiable beginning of our grief (such as at the time of diagnosis or the onset of symptoms), but there may not be an identifiable end. Instead there may be a series of emotional highs and lows depending on the pattern of changing symptoms and treatments, which complicates our ability to process the resulting emotions. In addition to the potential loss of or changes to our relationships with others, we often experience a loss of parts our own identities, physical/mental capabilities or vision of a life that we wanted to live.

Sometimes the relationship loss is in effect with ourselves – we realize that we can no longer become or maintain who we were or who we intended to be. For all of these reasons, it’s really important to look at the chronic and rare disease grief experience through a different lens.

So how do we cope with chronic illness and grief? First, we need to identify what it is that we are grieving, as we may experience multiple layers of grief and loss all at the same time.

Sometimes, we aren’t aware that we are grieving something in our lives, but may feel despair, hopelessness and sometimes anxiety and depression.

It's easier to work through grief and loss when we understand the source. We must then give ourselves time to validate and accept the loss, and work through how we might want to address it. Although there are many examples of chronic illness loss, it may be helpful to consider the following common experiences and coping strategies.

1. Loss of identity: No one wants to be identified by their human suffering, especially living in a western culture where identity is often linked to our accomplishments and achievements. Some of us can no longer work, work in the same field or participate in recreational activities that we once loved. When we can no longer identify ourselves by our accomplishments, expertise or interests this can be incredibly painful.

Coping strategy: It is important to mourn these losses and to validate the meaning that these experiences once provided. It is important to be grateful for that time, even if it has come to an end. At the same time, remind yourself of all of the things that you can do. Remember to apply modifications so that, if possible, you can still participate in something you love, just in a different way. Maybe you can no longer travel. Instead you could take an online course about a country you love, and take a virtual tour of the places that you had wanted to go. Your health conditions may prevent you from running, but perhaps you can cycle or walk.

Also, focus on the parts of your identity that you still have: as a mother, sister, brother, grandparent, partner, friend, member of a religious community or another supportive group.

Try something new. With the time you would have spent on work or a recreational activity, intentionally spend time on another activity or pursuit. For example, maybe you enjoy writing, and never had the time, or you take an online photography class or sign up for an online academic class. It’s important that you still dedicate this time outside of managing your health care and daily life obligations.

2. Loss of friendships and support systems: It is not uncommon to grieve the loss of a friend or family member who could no longer be supportive when illness changed the context of the relationship. Other  relationships might fade away when you no longer engage in a shared experience or work.

Coping strategy: Focus on the people who want to show up and form new alliances: Lean into the friendships and support systems who want to be supportive. Just like any other life experience, not everyone is meant to be involved in all parts of our life journey. We all benefit from community, and the loss of a friendship can also allow for the gain of another. Join an in-person or online group with a common interest, such as a religious or recreational group.

Form new friendships and alliances in your chronic illness community. It is so nice to connect with someone else who “just gets it.” Because managing your health care is a part of your life, it’s beneficial to have peers who understand the complexities of living with your health care condition. Shared experience can be validating and supportive. Now with the advent of technology, there are Facebook and other peer support groups through which you can meet someone who shares your health care condition without ever leaving your couch.

3. Loss of occupational or educational aspirations: Some of us may no longer be able to work, and others may no longer be able to work in their field because of a risk to our health. Occupational grief can be incredibly devastating, especially if you received your diagnosis later in life. This is an example of layered grief, where you lose your identity as a skilled professional, sometimes doing something you enjoyed while also losing a community.

Coping strategy: Sometimes a change of course can be a blessing in disguise, and switching career paths may lead to a better quality of life. For example, you may find that a work from home option provides more flexibility and less stress, or that choosing to do something else is just as rewarding as your former career. If you are not able to work full time, working part time or taking leave may provide much needed time to better manage your health care condition and focus on other aspects of your life which had been neglected.

It takes strength, perseverance and organization skills to manage a chronic health care condition. You may find that you have become a medical case manager, a skilled negotiator (especially when navigating a complex medical system), a skilled organizer and a consummate multi-tasker. Write these skills out and reference them when you are feeling grief about your life with chronic illness. Let others know. Able-bodied individuals may not be aware of the incredible skills it takes to manage a chronic illness. Be proud of this accomplishment, and let others know! It’s nice to be complimented for being a chronic illness warrior.

4. Loss of missed life events: This can often be the hardest grief of all because this ongoing loss is inevitable. Time spent participating in life events with the people we love is among the greatest joys in life. The hard truth is that chronic illness will often steal this from us. As I am writing this very article, I am grieving my own loss of missed life events due to a recent health flare. No one wants to be left out, and miss out on life because we are not feeling well. Because this may happen repeatedly, it is important to be aware that this grief will be activating. One canceled holiday is a reminder of other holidays missed. Some patients will experience anticipatory anxiety prior to important commitments.

Coping strategies: Remind yourself that it is normal to grieve those losses, as the unpredictability of illness is a loss of agency. If you do miss an event, make sure to schedule something when you're able to do so. If it is a holiday or event that cannot be repeated, put something on the calendar with the people who you missed out on seeing. Schedule something to look forward to. Everyone needs this.

Finally, I leave this article with the acceptance and acknowledgement that our losses will always hurt, and experiencing grief is part of living with rare and chronic health care conditions. All of us will grieve the loss of the friendships we were not able to repair, the vacation that we never get back and the wish for the healthy body we hoped would allow us to live the life we intended on living. I share in the collective grief of the entire chronic and rare disease community. I also want to acknowledge and honor your resilience. Think of all the amazing and wonderful things that you have accomplished in spite of your illness. Remind yourself of this every day.