Grieving a decline in health

“I used to love hiking and now I can barely climb the stairs. I barely recognize myself anymore. I miss the person I used to be.”

If you are living with a decline in your mental of physical health, you may carry grief. You may be grieving one event or a series of ongoing events related to this decline. If you experience a return to your previous health, your grief may feel temporary, although you may still grieve the losses from that time.

Some aspects of your grief may include the following: 

• Wishing you could return to feeling well 
• Resentment for or envy of others who aren’t facing the same experiences you are
• Frustration or grief about what you can no longer do/must now do differently
• Missing the ability to do things that you used to enjoy but can no longer do/must now do differently
• A loss of your sense of identity 
• Trying to distinguish between grief and the effects of the health concern
• Worry related to future declines in your health (also called anticipatory grief)
• Needing to depend more on the people in your life, grieving your loss of independence
• Concern with becoming a burden to others
• Not wanting to keep living this way

What you may be grieving

You may be experiencing some or many losses at once, for example: 

Physical changes

• Differences in how your body is functioning
• Changes to your mobility or dexterity
• Inability to do tasks, hobbies, and activities you used to do or enjoy
• Changes in energy level — ongoing fatigue or exhaustion
• Not being able to work or go to school
• Changes to your daily routine 

Cognitive (thinking) changes

• Freedom and independence to make decisions in your life
• Changes to your memory and concentration
• Your ability to communicate 

Mental health changes

• Anxiety
• Depression

Your relationships

• Not being able to engage in social activities you previously enjoyed
• Changes in relationships with friends and family
• Changes in the ways people respond to you in everyday life

Your view of self

• Your sense of identity 
• Your self-confidence, self-esteem, or self-worth 
• Changes in sexual desire or libido
• Whether you feel attractive or desirable

When grief is hard to acknowledge

It may be hard to admit to yourself that you are grieving because it means acknowledging how much your life has changed. You may not be ready to accept these changes. 

Stigma and judgment 

Your grief might be affected by the following:

• People in your life not recognizing the impact of this health event on you. This may cause you to believe that your grief is not significant or valid. Your grief may feel heavier and more confusing if you do not feel it is acknowledged by others. People in your life may not understand the impacts this loss is having on your life. This is sometimes called disenfranchised or unrecognized grief. 
• Finding it hard to communicate with others what you are going through
• Your physical or cognitive changes not being accommodated (also called “ableism”)
• Real or perceived judgment from other people
• Other people’s advice and opinions about what you should do

See also:

• MyGrief.ca Module 27 - Unrecognized grief

Inequities in healthcare

Experiences of systemic racism or other sources of discrimination within the healthcare system may compound your grief. Your grief experience may be impacted by any of the following: 

• Delays in diagnosis
• Your relationship with your healthcare team
• How supported you feel by the healthcare system 
• How easy or difficult you find it to navigate the healthcare system 

If you are a caregiver

If you are the caregiver to someone who is experiencing a change to their health, it may also affect your life in many ways. You may also be grieving. Your grief may be for them, but also for how their health challenges affect your life. You may experience many conflicting and confusing feelings. You might feel resentful and exhausted, grateful for the opportunity to care for them, or all of this at the same time. It can be helpful to acknowledge how caregiving has made other parts of your life harder to attend to. 

See also:

• CaregiversCAN

• Try to identify and acknowledge the specific losses you are experiencing. 
• Know that your grief is valid.
• Take time to process your thoughts and feelings.
• Allow yourself to acknowledge the impact of any distressing or difficult experiences you have had in the healthcare system. If issues are ongoing, you may find it helpful to connect with a patient advocate at your local healthcare centre or hospital.
• Try to adjust your expectations about your daily life. 
• It may be helpful to identify things that bring you comfort and access them. 
• Try to recognize that accepting help from others is hard, but may be necessary.
• Seek support from trusted friends and family, a healthcare provider, or an appropriate grief counsellor.

Acknowledge and recognize the significant impact their health is having on their life and on those close to them. 

Provide emotional support by spending time and listening with compassion and patience.

Meet them where they are in terms of activities you might do together. For example, if they can’t leave the house, consider going over to play a game, watch a show together. 

Offer practical and specific help if you feel able to. 

• “Can I pick up your weekly groceries?” 
• “Can I do your laundry?”
• “Can I take you to your appointments?”
• “Can I send check-in texts?”
• Can I provide some respite to your caregiver(s)?

See also:

• Supporting someone who is grieving

If you feel overwhelmed or “stuck” please talk to a health professional or trusted leader in your community such as a doctor, chaplain, nurse practitioner, social worker or  school administrator. These trusted people may be able to connect you with appropriate programs, resources, and other forms of needed support such as grief counselling or medical care. You may be able to access counselling services if you have an Extended Health Plan, or through an employee assistance program. It will be important that they have experience in grief counselling. If you have thoughts of or plans to harm yourself or others, go to your nearest Emergency Department, call your local Crisis Line, or call or text 9-8-8 if you are in Canada. It is essential that you reach out for help.

See also:

• Do I need more help?
• MyGrief.ca Module 8 - Do I need more help and where to find it 

A change or decline in health involves loss and grief. It can be helpful to identify and acknowledge what your health losses are, and to grieve the changes you are going through. Reach out for support from friends, family, your healthcare provider, or an experienced grief counsellor. Consider connecting with others who are living a similar experience or joining a peer support group.