Grief and chronic illness conversation

Acknowledging the Impact of Mito

• The Managing Mito Grief and Chronic Illness Conversation Mito Event acknowledges the traditional owners of the land and pays respects to elders, past and present, as well as Aboriginal and Torres Strait Islander people participating in the event.
• The event also acknowledges people living with mito, those with an experience of mito, and those who love and care for them, recognizing each person’s unique journey as a valued contribution to the community.

Coping with the Emotional and Mental Health Impacts of Mito

• Mito comes with physical, emotional, and mental health challenges, including uncertainty and unpredictability, which can be difficult for individuals and families to cope with.
• Nathan, a registered Mental Health Social Worker specializing in grief counselling, is guiding the discussion on coping with the emotional and mental health impacts of mito.
• One of the community’s questions is about struggling to cope with the uncertainty of a child’s condition and the fear of not knowing what the future holds.
• Living with uncertainty is hard for humans, as people are wired for stability and certainty, and the unknown can feel scary and risky.
• Worry and discomfort about the unknown can be a form of care and protection for loved ones, particularly for parents who want to be prepared for any situation.
• The idea that the world should be a predictable place can be shattered by a diagnosis like mito, leading to a sense of uncertainty and loss of control.
• This experience can be described as “shattered assumptions,” where a traumatic event like a diagnosis challenges one’s belief in a just, benevolent, and predictable world.
• A diagnosis of a chronic illness can be a traumatic event that makes a person feel uncertain, unsure, and aware of their personal vulnerability and mortality, leading to worry about the unpredictability of the future.

Strategies for Managing Worry and Uncertainty

• This worry can be overwhelming, and there are no simple solutions, but strategies can be employed to help manage it.
• One approach is to separate thoughts from feelings, and to address the thought aspect, it’s helpful to identify the specific worry statement, such as “My son will change overnight”.
• By repeating this statement with slight modifications, such as adding “I’m having the thought that” or “I’m noticing I’m having the thought that,” a person can create distance from the worry and see it as just a thought, rather than a fact.
• This strategy can help people feel a sense of space from their worry, making it less attached and less emotionally activating.
• Another approach is to focus on the feeling aspect, such as fear or uncertainty, and to locate where in the body this feeling is experienced.
• By acknowledging and exploring this feeling, a person can begin to address and manage their emotional response to the uncertainty of their situation.
• A strategy for managing emotions related to grief, chronic illness, or disability involves locating the feeling in the body, imagining it as an object that can be held, and noticing its shape, size, color, weight, and texture, allowing for acknowledgment and separation from the emotion.
• This process involves labeling the emotion and gently placing it down, freeing oneself to focus on other tasks while still acknowledging the emotion’s presence.
• This technique is a form of self-reflection that can help manage feelings that cannot be resolved through action, especially when uncertainty or fear is present.
• By acknowledging and taking control of emotions, individuals can prevent them from becoming all-consuming and allow themselves to function in daily life.
• A key aspect of this strategy is recognizing that one is not their thoughts, and that thoughts are just a product of the brain’s constant chatter, allowing for a bird’s-eye view and distance from painful or distressing thinking.

Delivering Difficult News About Genetic Testing

• When delivering difficult news, such as the need for genetic testing due to a family member’s diagnosis, it’s essential to acknowledge the weight of responsibility and the desire to get it right, while also recognizing that there is no absolute right or wrong approach.
• When discussing a family member’s diagnosis with siblings, consider whether they may already be aware of the diagnosis or have had thoughts about being affected themselves.
• It’s essential to decide whether to communicate the information to each sibling individually or as a group, weighing the pros and cons of each approach, such as potential resentments or feelings of being out of control.
• Timing is crucial, and it’s best to choose a time when siblings have the opportunity to consider the information and ask questions, such as a Saturday or Sunday morning.
• Having a prepared statement can be helpful, including information about the diagnosis, the advice from the genetics team, and the process of getting tested.
• It’s also a good idea to have some written information or resources available for siblings to refer to, such as information from the genetics team or a webpage.
• If a sibling resists or refuses to engage with the information, it’s essential to respect their decision, acknowledging that some people may prefer not to know due to personal reasons or an “ignorance is bliss” mentality.
• There may be pressure to make decisions immediately, but it’s essential to acknowledge that first reactions may not be the same as long-term reactions, and siblings may need time to process the information.

Sharing News About a Chronic Illness with Family Members

• When sharing news about a chronic illness, such as mito, with family members, it’s essential to give them time to process the information and consider their thoughts and feelings, rather than expecting an immediate response.
• Family dynamics play a significant role in how individuals respond to the news, and each person may react differently based on their role in the family and personality.
• Sharing the news in a gentle manner, such as by providing a link or simple, direct information, can help family members wrap their heads around the diagnosis and encourage them to ask questions.
• When discussing the news, it’s crucial to slow down and allow family members to fill the space with their thoughts and respond to their concerns.
• Thoughts and feelings can be independent of each other, and it’s common for individuals to feel a sense of unfairness or guilt when someone they care about is affected by a chronic illness, even if they know rationally that they are not to blame.
• Humans have a desire to understand the reason or meaning behind certain events, and when there doesn’t seem to be a reason, they may try to figure it out or take on some responsibility for it.
• Survivor guilt, or the feeling of guilt when someone else is suffering and you are not, can be a common experience for individuals dealing with a family member’s chronic illness.

Addressing Feelings of Guilt and Responsibility

• Writing down statements and assessing their truth can be a helpful way to process feelings of guilt or responsibility, such as writing “I am responsible for my sister having mito and me not” and assigning a percentage to how true that statement feels.
• When dealing with difficult emotions related to chronic illness, it’s essential to acknowledge and analyze them, rather than pushing them away due to discomfort or feelings of irrationality.
• Externalizing emotions by looking at them as objects and placing them to one side can be a helpful process in managing emotions.

Processing Difficult Emotions Through Self-Compassion

• A self-compassion exercise may be beneficial in addressing emotions related to chronic illness.
• Writing a letter to express emotions, even if it’s not meant to be sent, can be a therapeutic way to process feelings and thoughts, and handwriting is recommended for its powerful effect.
• Destroying the letter after writing it can be a way to release emotions and thoughts, allowing them to “go off into the ether”.
• Having a conversation with the person impacted by chronic illness about one’s feelings can be delicate and may not always be advised, as it may burden them with additional emotional management.
• Acknowledging the unfairness of the situation and expressing empathy can be helpful, but it’s crucial to find individual strategies to address one’s own feelings and turmoil.

Understanding Grief in the Context of Chronic Illness

• The idea of accepting a new normal due to chronic illness can be isolating and may involve grieving for what has changed in life.
• Grief is an umbrella term that encompasses a range of feelings and experiences, including isolation, secondary losses, and uncertainty that come with a diagnosis and its impact on physical health.
• The loss experienced by individuals with chronic illness can be a cumulative set of losses, including the loss of identity, independence, and the ability to do things they used to do, leading to changes in income, family structure, and living situation.
• The loss can also include the loss of support from others, sense of the future, and usual interactions with people, as well as the loss of touch, connection, and sense of safety and predictability in the world.
• The loss of meaning and purpose can also occur, leading to questions about faith and the meaning of life.
• The concept of acceptance in grief is complex and can be misunderstood, with some people interpreting it as acknowledging the reality of the situation, while others see it as being okay with the situation, which can be unrealistic.
• The idea of acceptance as a destination is also challenged, with the suggestion that it is a process that people move in and out of, with times of greater acceptance and times of greater struggle.
• The dual process model of grief, developed by bereavement researchers, can be a useful framework for understanding and working with grief in the context of chronic illness.
• This model acknowledges that grief is a non-linear and messy process, and that people may experience a range of emotions and reactions as they navigate their loss.
• The work of Elizabeth Kübler-Ross and her five stages of grief (denial, anger, bargaining, depression, and acceptance) is also referenced, but noted as being overly simplistic and not representative of the complex and individual experiences of grief.

The Dual Process Model of Grief

• Grief and grieving in the context of chronic illness involve two main areas: emotion-focused grief work and adaptation to the new reality, with the goal of finding a balance between the two.
• Emotion-focused grief work includes processing emotions such as fear, sadness, longing, guilt, and regrets, as well as dealing with intrusions of grief that can feel overwhelming.
• Continuing bonds in the context of chronic illness refer to maintaining a connection with the person one was before the diagnosis and its impacts, and finding ways to integrate that person with the current self.
• Adaptation involves learning to navigate the new reality, including learning a new medical language, attending medical appointments, and making changes at home.
• Denial or avoidance can be a necessary coping mechanism, allowing individuals to pace themselves and adapt to the new reality gradually.
• Practical adaptations may involve distracting oneself from grief by getting busy, but it’s also important to actively address emotions and find a balance between the two areas.
• A diagnosis or major change can alter roles, identities, and relationships, and it takes time to figure out these new dynamics.
• The process of moving between emotion-focused grief work and adaptation can be chaotic, with individuals experiencing waves of emotion and needing to find ways to manage them.
• A reflection tool can be used to determine if the balance between the two areas is right, and to identify areas where extra assistance or new strategies may be needed.

Chronic Sorrow and Grief Associated with Chronic Illness

• Chronic sorrow is a concept that may apply to living with chronic illness, involving a recurrence of persistent or pervasive sadness that can fluctuate over time.
• Grief associated with chronic illness can be significant and may not be recognized as it is often ambiguous and unclear, unlike grief from someone’s death, which is a concrete event.
• This type of grief can be disenfranchised, meaning it’s not well acknowledged by others or ourselves, and we don’t have rituals like funerals to express our sorrow.
• It’s essential to find ways to express this grief and to recognize that it’s a normal response to ongoing changes in life.

Hope and Acceptance in the Face of Chronic Illness

• Hope plays a crucial role in coping with chronic illness, and it’s essential to redefine what hope looks like in the new reality.
• Reflecting on what one hopes for in their life and future, and how they want to cope with their situation, can be a helpful exercise.
• Grief for the imagined future, such as a child not experiencing certain milestones, is a form of grief that needs to be acknowledged.
• Recognizing this grief can help parents come to terms with the changes in their child’s life and find a way to be at peace with the situation.
• Acceptance is not always a linear process, and it’s normal for feelings of sorrow and grief to fluctuate over time.
• The concept of chronic sorrow can help explain the ongoing and fluctuating nature of grief associated with chronic illness.

Perspectives on Chronic Illness: Parents and Children

• The book “Far From the Tree” by Andrew Solomon explores the experiences of parents and children dealing with various challenges, including cerebral palsy and schizophrenia, and may offer helpful insights.
• Children who grow up with a chronic condition often view it as a normal part of their reality, which can be different from how their parents perceive it, with parents often carrying more pain and worry about the condition’s impact on their child’s life.
• The book “Far From the Tree” is recommended for exploring this concept and challenging one’s perspective on how children with chronic conditions experience their reality.

Practicing Self-Care and Mindfulness

• To cope with painful emotions that are part of a chronic pattern, it’s essential to practice self-care and acknowledge these emotions as a universal human experience.
• A mindfulness exercise is suggested to help manage these emotions, starting by getting comfortable, focusing on one’s breath, and noticing the physical sensations associated with the emotions.
• The exercise involves scanning the body to locate the emotions, noticing their intensity, and acknowledging them as a form of distress or suffering.
• Practicing self-compassion is encouraged by offering kindness and affectionate touch to oneself, such as stroking one’s thumb or fingers, and using words of kindness to acknowledge the pain and difficulty of the experience.
• The exercise concludes by noticing any changes in the emotions, gently bringing attention back to the breath, and slowly opening one’s eyes when ready.

Supporting a Loved One While Managing One’s Own Grief

• Self-compassion exercises can be helpful in managing emotions, and resources such as Kristen Neff’s work and the website self-compassion.org can provide access to recorded versions of these exercises.
• Acknowledging and validating emotions, rather than pushing them away, can be beneficial in processing grief, and may lead to a dissipation or softening of emotional sensations in the body .
• Supporting a loved one while managing one’s own feelings of grief can be challenging due to the uniqueness of each relationship, and it’s essential to acknowledge and adapt to different grieving styles.
• There are different grieving styles, including intuitive grievers who are more emotion-focused and expressive, and instrumental grievers who are more problem-solvers and task-oriented.
• Intuitive grievers tend to be more likely to talk about their emotions, access counseling, and participate in support groups, while instrumental grievers may deal with grief by becoming well-informed about the condition, engaging in research, and participating in distracting activities.
• Many people may not fit neatly into one category, but rather blend elements of both intuitive and instrumental grieving styles.
• It’s essential to acknowledge that there is no one “right” way to grieve, and that different approaches may be helpful for different people.

Building a Supportive Community

• To best support someone, it’s crucial to be curious about their individual needs and preferences, and to recognize that these may differ from one’s own.
• When dealing with a new and overwhelming situation, such as a chronic illness, it can be helpful to schedule a specific time to talk about it and process emotions, allowing for a balance between discussing the issue and not letting it take over everything.
• Building a community of support, including friends, family, professionals, and services like the Mito Foundation, is essential for managing one’s own grief and being able to support others.
• Developing a community of support is crucial for being able to tune into what others might need and provide effective support.
• Offering empathy and being a good listener is essential for being an effective support, and it’s often necessary to resist the urge to try to fix the problem and instead focus on acknowledging the struggles and emotions.

Processing Significant Losses and Finding Ways to Move Forward

• When dealing with a significant loss, such as the loss of a job or a way of life, it’s essential to acknowledge the grief and find ways to process it, even if others may not recognize the loss as significant.
• Acknowledging the grief and finding ways to honor the past, such as through self-compassion exercises or rituals of acknowledgment, can be helpful in moving forward.
• Creating a ritual, such as making an album of memories, can be a way to acknowledge and process the loss of a significant part of one’s life.
• Finding a way to mark the end of a chapter in life, such as a job or a way of life, can be helpful in moving forward and processing the loss.
• Acknowledgment of a loss can be meaningful, and exploring avenues for connection to enjoyable parts of a past role or work is possible, even if it’s not in the same form or way as before.
• It’s essential to consider if there are tiny parts or elements of a past role that can be done differently now to maintain a thread of identity and satisfaction.
• Exploring self-compassion activities can be helpful, and discussing these activities can be interesting and informative.