What is grief of loss after illness like? Help with living loss.

Venetia Leonidaki July 2023

What is grief of loss after illness like? Help with living loss.

Authored by Dr Venetia Leonidaki

Grief for living loss in chronic illness is common but not often talked about. Giving up treasured habits, such as exercise or your daily coffee, as a result of ill health can trigger a powerful grief reaction. Being forced to abandon beloved activities can shake us to the core, leaving us with a sense of losing ourselves. Here I discuss some ideas to help you adapt to this new reality by drawing on evidence-based Cognitive Behavioural Therapy (CBT), Acceptance Commitment Therapy (ACT) for long-term conditions, and chronic illness counseling.

Chronic illness and living loss grief -what it is

The psychological impact of being forced to give up treasured habits for the sake of our well-being can be huge. A new diagnosis of a long-term condition or a deterioration of an existing health problem often comes as a blow. Upon overcoming the initial shock, adjusting to this new reality often includes sacrificing cherished activities. These activities may include anything from high-intensity exercise, weightlifting, smoking, drinking alcohol, or partying hard to driving, eating sugar or salt, or living a hectic daily pace. Grieving for living loss after a chronic illness diagnosis or change in health is often part of the process of letting go of such activities.

Such activities have formed part of our lifestyle and, even, identity. Thus, it is not surprising that chronic illness and loss of identity (or the fear of this happening) often go hand in hand. This is true for many types of long-term condition, including diabetes, chronic obstructive pulmonary disease (COPD), stroke, heart conditions, irritable bowel syndrome (IBS), cancer, degenerative disc disease, and long Covid. All the above conditions require changes in our behaviour, environment, and lifestyle. Such changes often trigger feelings of grief and sadness.

However, conversations about how prescribed lifestyle changes lead to feelings of grief are often missing. Our society’s collective defences make people look away from any kind of loss. This is especially true when the loss is non-death related and even more so, when the loss of a treasured activity takes place for the sake of our well-being. As a result, medical professionals and family members advise people with chronic health conditions to make huge sacrifices without acknowledging how distressing unwillingly giving up beloved habits can be.

The reality is that if you experience a chronic illness, you probably know yourself what lifestyle changes you need to adopt. However, we usually cannot give up longstanding habits in the blink of an eye. In fact, we may struggle to give them up at all.

Why is it so challenging adjusting to living loss in chronic illness?

Here I am discussing four reasons which make adjustment to living losses found in chronic illness far from simple.

Dropping old habits is never easy. A common challenge is that such conditions require alterations in our lifestyle and changes in longstanding habits. Research suggests that human beings are creatures of habit and nearly half of our daily activities are habitual. Our brain likes familiarity because it allows us to do things automatically, spending less energy on thinking and decision making. Thus, giving up an old habit entails a taxing behavioural change.

We don’t choose to change but are forced to. We are called to make a change not because we choose to but because we have to. Our body is ill and we need to follow our doctor’s advice. A lifestyle change imposed by ill health makes us feel vulnerable and disempowered. We may even be confronted with our mortality for the first time in our life. Thus, it is not only that we need to exhibit strong motivation to achieve change but also grapple with a bunch of difficult emotions about our physical limitations. Such emotions often include anxiety, shame, guilt and anger.

Grieving parts of ourselves. We may have developed a kind of attachment to this habit over the years. Eating certain foods, smoking or intense exercise may have formed part of who we are. We view these activities as parts of our identity. Giving up an activity that we love is like saying goodbye to our old self. Previous beliefs about ourselves and our body all of a sudden come into question. We are no longer the “strong” one in our family or the “cool” one in our group of friends. Inevitably, feelings of grief and sadness may well result because we will miss those parts of ourselves.

Losing benefits. Such benefits may be social. Giving up intense exercise due to a heart condition, for instance, could entail withdrawing from a cherished tennis club. Other benefits may be practical. Removing sugar from your diet following a diagnosis of diabetes may entail quitting your daily coffees because you don’t fancy them sugar-free. No coffee means no energy boosters to help you get through a busy day. Further, the prospect of losing financial benefits is one of the scariest aspects of a long-term condition. If you work as a porter and can no longer lift weights, you may understandably worry about your professional future and survival.

BPS psychologist or CBT therapist connects with client’s hand in evidence-based psychotherapy or adjustment counselling

How to adjust and grieve for your losses when illness forces you to make lifestyle changes

Although you may feel that giving up beloved habits is beyond your control, you have control over how you go about it. Specifically, research indicates that a certain coping style, called active coping, can help you adapt more easily to the reality of a long-term condition. Active coping refers to attempts to deal directly with the stress stemming from an illness instead of shying away from it. Examples of active coping follow:

Adaptive ways of making sense of the sacrifices that we are making so we can remain optimistic in the face of adversity (e.g “I am becoming a better person through suffering”);
Changes in our behaviour so we continue to enjoy a sense of self control (e.g. replacing running with walking);
Confronting painful emotions that the change evokes instead of suppressing them (e.g. feeling sad and giving ourselves permission to have a cry). Allowing yourself to grieve can be part of active coping.

Read here about coping with a chronic illness forcing you to let go of beloved habits

Although the idea of active coping is simple, putting it into practice is often not. Psychotherapists or psychologists specialising in chronic illness can help you with this task. In particular, evidence-based CBT for physical health problems helps you change your behaviour and attitude. Chronic illness counselling can facilitate emotional processing which could help you move forward and live well with a long-term condition. ACT could help you embrace difficult emotions as well as treat lifestyle changes as an unwelcome guest who is here to stay.

Ready to book psychological therapy to deal with living loss in chronic illness?

Book an online therapy session to receive psychological help with pain and discuss your psychotherapy goals. We are based in Central London and offer online therapy across the UK and internationally.

Colm Gallagher draws on CBT, narrative therapy and ACT for supporting clients with physical health problems.

Dr Venetia Leonidaki offers adjustment to illness counselling and integrative therapy for living loss.

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What is grief of loss after illness like? Help with living loss.