Whenever there is a loss of something important such as your health, functioning or abilities, or someone important, you may feel varying amounts of loss and grief.
Some losses are more difficult than others. Acknowledging these losses, or grieving, is common for people living with kidney disease. Grieving is more than typical sadness. It is a natural and expected process that happens over time and can include a wide range of reactions, thoughts and feelings.
Even though grieving can be painful, it is important to remember that expressing your grief helps you adjust, accept and understand your losses. Grieving allows you to accept losing a meaningful part of your life and continue with your life in a different, but healthy way. Part of the grief is a desire to have things back to "the way they were" for you, your family, your friends and others.
Not everyone experiences grief in the same way. Grief is unique to each individual in how long it lasts, how intense it is and what it means. Even two people who have similar diagnoses and treatments may respond differently to the adjustment.
How, when and what people grieve depends on many things. These can include your age or stage in life, your previous experiences with grief and loss, and the amount of social support you have. Knowing there may be future losses can also trigger feelings of grief before the actual loss has occurred.
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Being diagnosed and treated for kidney disease can be upsetting. In the beginning, you may tend to focus on problem solving, such as arranging appointments as soon as possible, canceling or postponing other commitments, deciding treatment options, and getting through the treatments. As treatment continues or ends, you may realize you have feelings and reactions of grief to the losses you are experiencing.
People living with kidney disease can experience loss and grief at different stages of their disease, from diagnosis to treatment to palliative care. The loss may be temporary or permanent, life-altering or a minor inconvenience.
Here are some examples that people with kidney disease have described:
- A part of your body or a bodily functions
- Sexual changes, including sexual ability and fertility
- An ability to perform certain activities (i.e. caregiving, working, leisure)
- Physical discomfort due to treatment or ongoing symptoms
- Sense of security (in your health, in your future)
- Sense of control or independence
- Self-esteem or sense of identity
- Goals, hopes or dreams
- Faith or spirituality
- Your sense of life as safe and predictable
- Routines and rhythm, or life "the way it used to be"
- Relationships with friends, family members or co-workers
- Intimate relationships
- Loss of certain roles (i.e. you can no longer work, or you can no longer prepare all of the family meals)
- Loss of other people with kidney disease you know and meet during your treatment
- Job or job opportunities
- Financial insecurity
- Ability to work
Moving through grief has been compared to healing from a physical injury. What you experience immediately after the injury can be quite different from your experience one year later. There can still be an impact. You might have a scar or a sensitive part of your body that continues to connect you to what happened.
Sometimes, people worry they are "getting stuck" or not coping well with the grief. You may also wonder how long the grieving process will last and when you can expect to start feeling better again. There is no single answer to this question. There are some common experiences through this journey. It is important to remember that steps are similar but not identical for each loss or each person grieving the loss.
Even though talking with others about your experiences of loss and grief may be difficult, it is important. People around you may not recognize your loss or your grief. It can be hard to acknowledge grief and loss when others see you as someone who should be grateful to be alive, regardless of what has happened. Grief can also be hard to acknowledge when others find it difficult or impossible to listen to the intense feelings that can come with grief.
If your friends or family members act like they don't want to talk to you, remember that they may not be used to talking about grief or they may not fully understand your grief. They may really want to help you, but don't know how. You can explain to them that you need someone to listen to you and support you. That you don't expect them to make everything better, you just need them to listen to you. It may not be easy, but it is important to let others know what you need.
It may seem strange to suggest that you might have to be the one to reach out to others, but many people believe they don't know how to be supportive and offer comfort during difficult times. They may fear that they will upset you by talking about your losses or the future. Sometimes family and friends may have difficulty talking about things. Others may not know how to provide support and are often grieving with their own personal issues.
Be patient with yourself and others who expect you to "get over it." You never really "get over it." However, it is possible to find new ways of navigating through life. If you are uncomfortable talking about your loss and grief with your family or friends, a counsellor or support group may be an option.
Grief that is not resolved, addressed or acknowledged may lead to depression and can interfere with your ability to move forward in your life. If you feel that grief is interfering with quality your quality of life, consider reaching out for some support and/or counselling.
Caregivers, family and friends experience loss and grief as well. For example, family members and friends may feel the impacts of your losses, as well as their own unique ones. Each person will have different needs. Family members will need to discuss the effects of these changes, including shifts in roles and responsibilities. It will take time for the family to regain a balance. This is a time to talk with each other about the changes, the losses and how you and your family are adjusting.
Feelings of grief can reoccur years after treatment has ended. Some examples of causes include:
- Routine medical appointments
- Hearing about another person who has been diagnosed with kidney disease or who has died from kidney disease
- Anniversary events (such as date of diagnosis, date of starting dialysis)
- Important events with family or friends (graduations, birthdays, holidays)
- Experiencing ongoing losses because of adverse after-effects of treatment
Anticipatory grief can occur before a person passes away, as family, friends, caregivers or the person themself anticipates disability, life changes and eventual death. This type of grief can vary greatly from one person to another. It may involve feelings of anger or confusion. However, it may also be helpful in some respects, for example in helping a person prepare for the passing of a loved one. In some cases, grieving before a person passes away may provide the chance to achieve closure with your loved ones, which doesn't happen if someone passes away suddenly.
Many of the grief-related topics discussed so far also apply when a death occurs. However, there can be more stressors, expectations and issues when a death is involved. For example, most cultures have mourning rituals associated with death that require preparation and planning.
Grief is experienced somewhat differently when the loss occurs after a long illness rather than suddenly.
When someone is terminally ill, family and friends often grieve before the death, in anticipation of the loss. This grieving helps people prepare for the actual loss. Many people believe they will experience less grieving because the death was expected. However, when the death happens, your grief reactions can still be intense and overwhelming.
For more information and resources, visit the Palliative Care
section of our website.