GRIEF AND LOSS

The thoughts, feelings, and reactions we experience when faced with change and loss, are known as grief. Grieving is a very individual process.

For those with endometriosis and other chronic illnesses, changes in health and lifestyle can cause a feeling of grief and loss. The type of grief that comes with chronic illness is complex, and there is no ‘right way’ to grieve.

Chronic illness can impact a person’s mobility as well as the ability to keep up with usual everyday routines, do familiar tasks, or be in usual roles. The ability to drive may be lost as well as opportunities to do things anticipated or planned such as study and travel. Your symptoms may impact your employment, income, and career plans, as well as your ability to socialise with friends and family and impact your relationships.

Grief and a sense of loss can start at diagnosis or earlier. With daily reminders and frustrations about what’s been lost, or with new health issues arising or crises happening, you may feel you are in a continuous cycle of loss and grief.

Mental Well-Being and Self-Care with Endometriosis Information Guide

Common emotions with endometriosis

There are some feelings that are a big part of having endometriosis and other chronic conditions. These feelings are ok to feel, they are normal to feel and you are not alone in feeling them.

It is common to feel:

Frustration at your body, the limitations, the symptoms, and the changes your illness causes.
Anger about living with a difficult condition, feeling resentful about it, and asking "why me?"
Guilt for needing to rest, setting boundaries around health, or not being able to show up as often.
Jealousy of non-chronically ill people and wishing you had their health and ability level.
Fear of being out of control of your own health and how that might change in the future. Having anxiety about your symptoms each day.
Loneliness, feeling distant, disconnected and withdrawn from others. Finding it hard to connect with people who understand so feeling rejected or isolated.
Sadness about life with your condition and wishing things could be different.
Lost, feeling like you aren't sure where your life is going or who you are because of a condition's impact on your life.

Signs of grief

Grief about health affects people in different ways, common feelings of loss include a person feeling that they have lost:

their old self – how they used to be (identity)
their sense of control over their body or mind
independence
confidence – in themselves, in the future
self-esteem
privacy and dignity
life as it was
their sense of place in the world

Many factors will play a part including your personality, your life experiences, your ability to cope under stress, and also learned coping strategies.

What can help?

Grief can affect us emotionally, physically, mentally, socially, and spiritually. Grief is a difficult thing to live with and live through and any kind of loss needs acknowledging and grieving for, whatever it is.

Make time to grieve honestly for what has changed and been lost. It may help to think of grief as a process that helps to adjust gradually to what’s happened.

Below are some tips to manage chronic illness grief:

Allow yourself to feel and express your feelings; learn how to have those difficult conversations.
Educate yourself as much as possible about your condition and take an active role in your treatment. This may help regain a sense of control and improve your self-esteem.
Be realistic about what to expect from yourself.
Let go of expectations, do what you need to do for yourself and understand that other people and society’s definition of what's normal doesn't apply.
Establish a good relationship with a supportive health care provider.
Join a support group; talking to people that have similar experiences and feelings can help.
Communicate with friends, family, and your partner.
Learn to adapt, make substitutions and modifications so that you can still participate in life activities.
Listen to your body, pamper, and nurture yourself through eating well, gentle exercise, and prioritising quality sleep and rest.
Make peace with your chronic illness.
Practice self-care and self-compassion (we have a fact sheet on this topic.

Sometimes grief can go unrecognised or unacknowledged by others, who don’t realise the huge impact that a change in health can have. Talking assertively to those around you is important so they have a clear understanding of how your health is impacting you; this will enable them to have compassion for what you are experiencing and provide the support and practical help you need (see our ‘Talking About Endometriosis with the People in Your Life Information Guide).