Chronic Pain, Changing Roles and Identity
Many times in life we will face challenges and changes that are beyond our control. These challenges and changes can cause enormous disruptions to our life, often marking the end of one chapter and the beginning of another one. This different chapter can often involve something which is unwelcome and unplanned for; it is forced upon us with no choice or time to prepare for it. The adjustment can move us through feelings of despair, anger, loss and grief. It involves a shift in our perception of ourself, our world and the life we thought we were going to live.
In this article we are going to explore what makes us who we are, and why living with pain alters this version of ourselves. We will explore the tools we can use to learn to adjust and adapt and reduce the suffering we experience.
What makes up identity?
Have you ever asked the question “Who am I?”
Identity is, in short, how we view ourselves:
- It includes our memories, experiences, relationships and values.
- It includes physical characteristics – our race, height, gender, age.
- It includes our beliefs – political opinions, moral attitudes, religious beliefs.
- It includes our roles – parent, profession, family member, community member.
How is it formed?
Identity starts to be formed as a child by our parents and peers. This is where we learn how to view ourselves and how we fit into the world around us. As an adolescent we develop this identity through experimentation and education. As an adult it is often shaped by our opportunities and challenges
Interestingly, our identity is constantly changing. We are born with a body, but every cell is replaced over the course of our lifetime. Our likes and dislikes for certain foods, music, people, movies and activities is constantly changing as we age. We change our physical appearance over our lives with different clothing styles, haircuts and colours, gaining and losing weight, adding and subtracting tattoos and piercings. We change the roles we play with the addition or subtraction of a spouse, child, family member, or job.
What we know for certain is that identity matters to everyone. It dictates how we view ourselves and how we fit into the world around us. It dictates the choices we make every day and how we spend our time. It shapes how we express ourselves – our fashion, our conversation, our interactions, our interests and hobbies. It shapes who we interact with and how we interact – our friends, our social groups, our community. It shapes how we feel about ourselves and the life we live – our morals, our values, our ethics.
Chronic Pain and Identity
It is not surprising then, that chronic pain can have such a dramatic impact on our sense of identity and self. Chronic pain is one of the most complex and challenging experiences we can face, feeding into every area of our lives, even those completely unrelated. Chronic pain can reduce our capacity to earn a living, be financial stable, continue our leisure activities, maintain intimate relationships and this is just to name a few.
The suffering we experience is not just because of the physical pain, but also grief and loss associated with the pain.
- Our body changes – in appearance, capability, predictability, consistency, energy levels.
- Our external environment changes – our relationships, roles within our family and workplace, our engagement in our community.
- Our internal world changes – our mood, recognition of ourselves, hope, plans and goals.
- Our sense of control over our lives and our health
Rebuilding identity with pain
Often what we can’t do because of pain, starts to impact on the things we can still do. We lose sight of our hobbies, passions, interests and connections, only stripping more parts of our identity away from us. If we can find ways to reintroduce these into our life, we can start to rebalance our life to be more than pain.
Some tools that can help us to rebuild our identity when living with chronic pain include:
- Acknowledging and understanding our pain
- Adjusting to the new us
- Understanding our values
- Adjusting to our changing roles
- Connecting with our community
- Rebuilding our relationships
Acknowledging and understanding our pain
- It is normal to feel a sense of grief when coming to term with our pain
- It is normal to focus on what has been lost; what we can’t do and what we previously could
- Like the death of a loved one, many of us will mourn the loss of parts of ourselves and the life we thought we would have
- Interestingly, with or without pain, life is constantly changing – our abilities, our health, our roles, our body, our relationships …
- Focusing on the “past” us often keeps us anchored in this grief and loss, only fueling the suffering we experience each day
Coming to terms with our pain is not giving up
- It is finding a path forward
- It is getting back to the parts of our life that are meaningful and enjoyable
- It is not letting go of things being different in the future
- It is learning to let go of the unhelpful thoughts and feelings about pain
Some people with chronic pain find that when they stop fighting against their pain and trying to be pain-free, it leaves space to focus on other aspects of their life. This can allow greater time, space and capacity to focus on moving forward and managing their pain (link).
Strategies for coming to terms with our pain include:
- Learning about our pain (link)
- Understanding how to move within its boundaries, and how to gradually widen those boundaries e.g. pacing, graded exposure (link)
- Focusing on the present: what we have now and what we can do now (link)
- Being patient with ourself and practicing self-compassion (link)
- Reintroducing pleasant activities into our day e.g., re-engaging in relationships, self-care, meaningful activities, hobbies and interests (link)
Adjusting to the “new” us
It is normal to feel lost and uncomfortable navigating the new version of us. Just like traveling to a new country or learning to ride a bike, it takes a while to get our bearings and understand our new surroundings. But just like learning anything new, it takes time, patience and effort.
Adjusting to the new version of us, means learning about ourself and our body as it is now and letting go of how it was. It can be helpful to identify our losses. But it is just as important to focus on the ways we still see ourself as us and the new parts to our identity. When you focus on who we are, instead of what we can or cannot do, it will help us to adjust and manage our pain better (link).
Strategies for adjusting to the new version of us may include:
- Keeping a notebook to understand our pain, it’s triggers for flares, and our current limitations or capacity (link)
- Creating goals to work towards, to increase our capacity and tolerance for meaningful activities (link)
Strategies for adjusting to the new version of us may include:
- Planning our days: scheduling rest, self-care, relaxation activities and pleasant activities (link)
- Creating a support network to help us on your journey e.g. friends, family, health care team, or people from the pain community (link)
Understanding our values
Many things may change as a result of our pain, including what we value most in your life. Often when we experience a “life quake” that changes every aspect of our life, we can find ourselves questioning what really matters in life. Pain can alter our capacity each day. Finding a way to align what we do have capacity for, with what really matters to us, can help improve our quality of life
To adjust to our new life, it helps to think about what our values are and how we see ourself and what matters to us. Our values help us to see what is important in your life, they add meaning to our life. Our values guide the way we live our life and help us to make small and big decisions. Sometimes when there are big changes in our life, it can be easy to forget what our values are and this stops us from using them to guide and direct our life and decisions (link).
Understanding what really matters to us, can help us to adjust to the new version of us …
Maybe our values have stayed the same and this might bring about a sense of familiarity and comfort. But maybe our values have changed e.g., perhaps the loss of a role, has enhanced the value of family or friends in our life. Either way, working out what we value can help us align our daily activities with what matters most in our life. Spending your valuable time doing what you love and what brings you happiness, can help reclaim aspects of your life away from pain. Learn more about values here and here
Adjusting to our changing roles
Pain can change our capacity to participate in roles we previously could, such as:
- Our employment
- Our hobbies e.g., gardening, sporting
- Our role in your family e.g., bread-winner, active parent, care-giver
- Our role in your friendships e.g., someone who helps others
- Our role in your community e.g., an active member of an organisation, church or charity
- Our role to yourself e.g., being fit, healthy and strong
Sometimes, we may not be able to get back to some of these roles. But it can be helpful to think about what these roles were giving us in terms of fulfilment, satisfaction, meaning and purpose and then find new ways to get that same sense in our new life (link).
Strategies for navigating the change to roles may include:
- Adopting different or new roles
- Finding different ways to contribute or participate (link)
- Exploring new possibilities for meaning, purpose and recreation (link)
- Adjusting our view of ourself to accommodate the new us (link)
- Learning new approaches and skills
- Understanding your strengths and utilising them in different capacities (link)
Connecting with our community
- Living with chronic pain can be an incredibly isolating journey (link)
- Many people feel cut off from family, friends and their community (link)
- They can feel misunderstood and judged (link)
- They can feel unable to commit to things like they previously could (link)
- Many people living with pain feels the “invisibility” of their condition, means others misunderstand the toll it takes on them, and why they are no longer as reliable as they once were (link)
Strategies for connecting with our community may include:
- It can be helpful to think about the community ties that we had before.
- Who were the people that we connected with in our community?
- Are we able to continue these connections?
- Are these connections still important to us?
- It can also be good to meet people who share our life experiences.
Strategies for connecting with our community may include:
- Create “safe” spaces to test run our outings
- Supportive people that we can be honest with about our capacity, who won’t judge or push us
- Safe environments where we can adjust positions regularly
- Creating timeframes and specific activities to match our current capacity
Living with any chronic condition can leave us feeling powerless and without a voice
- Often, we feel like everything is out of our knowledge-base, understanding and control
- We can feel ill-equipped to ask questions or assert ourselves
- We can also feel guilty or ashamed to acknowledge the reality of our situation
Resentment can occur when we feel we are voice-less
- It results from perceived wrongdoings
- It can be sparked by feelings of injustice or humiliation
- Comes from accepting negative treatment without protest
- Or feeling used or taken advantage of by others
- Results from feeling weak or passive in defending our own needs, wants and values
Strategies for overcoming resentment may include:
- Setting healthy boundaries with people (link)
- Teaching people how to treat us
- Dealing with emotions as they occur (link)
- Taking strategic retreats to regroup and recharge
- Assertively communicating with others – being clear with our communication and ensuring we have been heard (link)
- Dealing with conflict in a constructive way (link)
- Empowering ourself with knowledge about our pain (link)
- Sharing our knowledge with loved ones (link)
- Finding a healthcare team that understands our pain (link)
Rebuilding our relationships
It is normal to experience changes to our relationships as a result of the pain we experience
- These may include changes to:
- Roles and responsibilities
- Finances
- Activities previously done together e.g., interests, holidays, weekend activities, date nights, recreational activities
- Intimacy
- Shared plans and goals for the future
- Mood, conversation and conflict levels
Strategies for repairing relationships may include:
- Improving communication – being more open and honest about how pain is affecting us; listening to how pain is affecting our loved one (link)
- Being a coach – teach our loved one about strategies to help us manage our pain e.g., pacing, planning and goal setting (link)
- Scheduling time each day to ask questions and learn about one another and our days (link)
Strategies for repairing relationships may include:
- Practicing intimacy: spend time displaying affection towards each other (link)
- Express admiration and appreciation for one another (link)
- Schedule a date night each week and do something relaxing together (link)
- Practice active listening with our loved one (link)
Learn more
- ACI: Chronic Pain and Brain Injury – My Role (link)
- The Gottman Institute: Love & Relationship Resources (link)
- The Gottman Institute: Conflict Management Resources (link)
- Pain Management Network: Getting help form your healthcare team (link)
- NPC: Community Engagement and Support Resources (link)
- NPC: Chronic Pain & Relationships (link)
- NPC: Explaining Chronic Pain to Family & Friends (link)
- eBook: Transition in chronic illness: Relationships (link)
- Article: Healthy Relationships Matter More Than We Think (link)
- Article: The importance of relationships for our wellbeing (link)
- Article: The health benefits of strong relationships (link)
- Article: How relationships affect health and wellbeing (link)
- Article: Why relationships and social connections matter for health and wellbeing (link)
- Article: Strong relationships, strong health (link)
- Article: Relationships and Wellbeing (link)
- Article: Steps to open communication (page 20, link)
- Article: How chronic pain affects relationships (link)
- eBook: Relationships (link)
- eBook: Understanding transition (link)
- eBook: Coping with chronic pain. A guide for patients, partners, family and carers (link)
- eBook: Grief and loss (link)
- eBook: Constant change. The Shifting experience of chronic illness (link)
- eBook: Pain (link)
- Website: ACI: Pain and Family (link)
- Article: How you can help your loved one with chronic pain (link)
- Article: The impact of chronic pain on family (link)
- Article: Family dynamics and chronic pain (link)
- Article: Chronic Pain: A burden often shared (link)
- Article: Chronic Pain. Impact of chronic pain on the family (link)
- Journal Article: The Family Impact of Pain Scale: Preliminary Validation (link)
- Journal Article: Well-being, Happiness and Why Relationships Matter: Evidence from Bangladesh (link)
- Report: Relationships in the 21st century: the forgotten foundation of mental health and wellbeing (link)
- Article: Dating with a chronic illness: When do I disclose? What if it changes the way they see me? (link)
- Article: Everything you need to know about dating with a chronic illness (link)
- Article: Chronic Pain and your relationships (link)
- Article: The isolating loneliness of chronic pain and invisible illness (link)
- Article: What it’s like being single with chronic illness (link)
- Article: 12 Things only someone with chronic pain would understand (link)
- Article: The challenge of chronic illness and singleness (link)
- MeetUp: Group: Singles with Chronic Pain (link)
- Journal Article: Self-compassion, stress, and coping in the context of chronic illness (link
- Website: Carers NSW Australia (link)
- Website: Carers Gateway (link)
- Website: Relationships Australia (link)
- eBook: Transition in chronic illness: sexuality (link)
- Article: What happens when partners fight chronic pain together? (link)
- Article: Love: a powerful solution to chronic pain (link)
- Article: I love someone in pain (link)
- Article: How my husband and I make our marriage work, even with chronic illness (link)
- Article: When chronic pain gets between you and your intimate partner (link)
- Article: The unseen burden of chronic pain on intimate relationships (link)
- Journal Article: How significant is the significant other in patient coping in chronic pain? (link)
- Journal Article: Solicitousness and chronic pain: a critical review (link)
- Journal Article: Chronic Pain in a Couples Context: A Review and Integration of Theoretical Models and Empirical Evidence (link)
- Journal Article: Impact of Pain Intensity on Relationship Quality Between Couples Where One Has Back Pain (link)
- Journal Article: The role of spouse reinforcement, perceived pain and activity levels of chronic pain patients (link)
- Journal Article: A Couple-Based Psychological Treatment for Chronic Pain and Relationship Distress (link)
- Journal Article: Chronic Pain in a Couples Context: A Review and Integration of Theoretical Models and Empirical Evidence (link)
- Journal Article: Psychosocial Subgroups, Coping, and Chronic Low-Back Pain (link)
- Journal Article: Intimate Relationships and Chronic Illness: A literature review for counsellors and couple therapists (link)
- Journal Article: Impact of Chronic Pain on the spouse: Marital, Emotional and Physical Consequences (link)
- Journal Article: What are the marital problems of patients with chronic pain (link)
Images from UnSpalshed and Canva
Written by Aimee Carter, based on article written by ACI Brain Injury