Navigating the "New You" Identity with Pain – Gut Wrenching but Necessary
How does chronic pain affect your identity?
One of the first things we ask someone when we meet them is ‘what do you do?’ Our identity is tangled up in how we answer this question. Are you a lawyer, an architect, a driver, a stay at home mum, or an entrepreneur? Often it's the job titles that roll off the tongue, but your identity is more than your job. Further, if you live with chronic pain your identity might be changing and that can be challenging to accept.
So, who are you? And how can you claim your identity and befriend that person looking back at you in the mirror?
Your identity with chronic pain
Your identity is shaped by your individual experiences. This can include your race, gender and culture, your characteristics and personality, the way you think about yourself, and the way others see you. It can be difficult to distill into a coherent one sentence response!
Your identity is also constantly changing. You are not the person you were 10 years ago, or even 6 months ago. Over the course of a month, all of our skin cells are replaced. Even more impressively, approximately 330 billion (or about 1%) of our cells are replaced every day1.
Despite our constant growth, it's easy to become bound to who we think we are and struggle to embrace the changes that come with chronic pain.
The physical changes such as mobility, flexibility and endurance are obvious. But other changes can include how and when we work, our social roles, mood, self talk and how we view our future.
For a long time, I identified as the life of the party – an extrovert who loved meeting people, talking, and partying. But that changed with my pain journey. There were days when I wanted to collapse inwards and shut out the world and I realized that I’m actually a closet introvert who gains energy from periods of solitude and rest.
Remembering that change is part of life, and shifting your mindset, can make these adjustments easier to face.
Rebuilding your identity
There are several tools that can you to rebuild your identity when living with chronic pain.
Make sense of pain
Living with chronic pain can throw us curveballs, and learning about pain causes, types, diagnoses, impacts and treatments can reduce this uncertainty, and some of the worry.
Research shows that understanding and accepting is an important first step in living well with pain2. This doesn't mean giving up, but instead giving your mind and body the time and support needed to adapt, such as with these top 5 pain-management tools.
Adjust to new roles
It can take a while to get used to new things, such as when you move house and accidentally drive to your old place on autopilot. Pain is the same.
Discovering the ‘new you’ is a process, which might involve tracking symptoms, working with a trusted therapist, setting new goals and talking to other people living with pain to gain perspective and ideas.
Pain often changes how you can participate in your various roles, but it doesn't have to stop you completely because there are many ways to fulfill the same role. Not volunteering at the school doesn’t make you less of a mum, for example. When I made the decision to stop playing netball I was devastated, but there are so many movement alternatives that are much more beneficial for my body and mind. Plus, I can still watch games and support my favorite team. Different doesn’t mean less than.
Avoid comparisons
Comparing ourselves with others is normal human behavior. In fact, it may be an evolutionary response to make sure we align with our tribe and don't get excluded from our pack. However, comparisons when living with pain can make you feel deflated. We are all unique and imperfect in our own ways, so as Oscar Wilde famously said “Be yourself; everyone else is already taken.”
Understand your values
Values, like identities, change over time.
One of the most rewarding and insightful things I have done is work with a life coach to determine my values. At first, I read a list of common values and chose a few based on what I had valued in the past. But after more reflection, I realized that those values were out of date and more aligned to the ‘old me’, before I learnt to better manage my pain.
Exhibit A: Achievement. Why was achievement important to me? It was a ‘people pleasing’ behavior that wasn’t for me but for others. So, I broke up with achievement.
What are your values?
Connect with people
Sometimes, living with pain can be isolating and, unfortunately, social isolation is linked with a number of chronic health conditions, including depression, anxiety, cardiovascular disease, cancer and dementia3.
It's normal for close relationships to become strained while you and your loved ones adjust to changes in your relationships. Being open and honest about your needs and feelings is important so that those around you understand what you are going through and can show up in the ways you need it. When you're figuring out ways to connect, make sure you work within your boundaries and limits. For example, if sitting for too long can prompt a pain flare, meet a friend for a walk instead of at a cafe or try a phone call or video call. We also have tips for parenting with chronic pain and ideas for how your loved ones can support you.
Connecting with others who live with pain can provide you with a lot of support and validation. There are pain support communities online (such as our 'Living well with fibromyalgia Facebook Community) and in person. Just make sure that these communities fill your cup and positively impact your wellbeing.
Practice self-compassion
We love self-compassion! It's a good way to live and has been shown to improve the quality of life for people living with pain.
Despite this, we can often be our own harshest critic. Negative self talk can make you feel horrible, as well as lead to more stress and more pain4 but we sometimes pile it on, particularly if there are aspects of our identity that are hard to accept. Remember that this is a single part of who you are at a single point in time. Start with something small and simple like a helpful reminder to tell yourself. I like to say “you are stronger than you think”. Sonja, one of the MoreGoodDays® coaches favors “How very human of you!’
Find something that works for you. Put it on your mirror and repeat, often.
Consider labels & stigma
Labels can be both helpful and unhelpful. If you identify yourself as living with a disability consider the interplay between your identity and society-driven labels and stigma.
While there are many different models that seek to understand disability, I prefer the social model of disability. As opposed to the medical model (there is something ‘different’ with you as a person), the social model recognizes that disability depends on the society you live in – the one filled with physical, attitudinal, communication and social barriers.
For inspiration, check out Dylan Alcott changing perceptions to give people the lives they deserve.
And finally, a while ago I wrote this poem – when it comes to the ever-changing beast of identity when living with chronic pain, perhaps you can relate?
Sometimes I wish people knew how I feel,
Sometimes I wish the pain wasn’t so real.
Sometimes I push through, so hard I am crying,
Sometimes I breeze through without even trying.
Sometimes my actions are dictated by “I should…”
Sometimes my actions dampened, “I wish I could…”
Sometimes I seek compassion, understanding to be heard,
Sometimes I receive pity and hate every word.
Sometimes I make plans, confident I can hold back the tide
Sometimes I make excuses, am embarrassed and I hide
Sometimes people see the real me, I feel emboldened, aflame
Sometimes people see the real me and all I feel is the shame
Sometimes I pretend so I will be accepted, the same
Sometimes I pretend and, again, comes the shame
Sometimes I see hope, it is lights me up with its spark,
Sometimes I am hopeless, alone in the dark.
Sometimes I don’t know how I got to where I am – it's chilling!
Sometimes I don’t know how to move forward – it’s thrilling!
Sometimes I advocate for those whose voices are soft
Sometimes I hold my strength determinedly aloft
Sometimes I am able, sometimes I am not
Sometimes I make do, happy with all that I’ve got
Sometimes I feel blessed when loved ones appear
Sometimes I am terrified it will all disappear
Sometimes I show up, over sharing and true
Sometimes I know there is so much more I can do
Sometimes I make mistakes and I grow, I learn
Sometimes the mistakes repeatedly churn
Sometimes I’m a row boat, madly paddling turbulent seas
Sometimes I’m the yacht, calmly following the breeze
Sometimes, to save other people’s feelings, I deceive
Sometimes, to save my own feelings, these stories I believe
Sometimes I am convinced I know just what they’re all thinking
Sometimes into despair and destruction I go sinking
Sometimes the bells are ringing
Then the pendulum is swinging
In this crazy pool of humanity all of us bathe
Sometimes drowning, sometimes saved
Sometimes on the edges, sometimes floating, adrift
Sometimes the grateful observer, sometimes embroiled in the rift
Labelling, change and confusion
Certainty, hope, careless delusion
But.
There are a few, and they know who
For whom I am certain…
All of the time, you love and you care
And when I cannot, you will be there
To everyone else,
Look closely, please don’t judge or assume.
Just as the sun shines one day, dark clouds also loom.
Be compassionate and kind
Be honest, of open mind
Sometime is the one time we have to be free.
This one, precious moment, to just be.
Be Me.
