Life Beyond Pain: How to chart a new identity

I have a client named Maddie. She’s 21 years old, and she has been coping with chronic pain and illness since she was 9 years old.  When she was little, before the pain took over her life, she loved playing with dollhouses.  Her older sister had an enormous vintage version, and little Maddie loved making little characters out of clay and putting them in various rooms of the dollhouse.  She would spend hours crafting these miniature people, glung hair to their heads, affixing little buttons to their little outfits. She even used to follow her mom around the garden and pick tiny white flowers to place in a tiny cup in the miniature kitchen.  She delighted in bringing life and color to something that had previously just been collecting dust in her sister’s closet.  Even just telling me about it, many years later, Maddie’s face lights up with joy.

But over time, Maddie’s pain began to consume her young life.  They could not find what was wrong with her, and so her parents took her to every specialist they could think of.  The aching that began in her stomach after a traumatic incident at school began to spread to other parts of her body, eventually making it hard for Maddie to eat normally, play sports, or even keep up with her friends.  Her family, desperate to find answers and relief for her daughter, pursued all kinds of medical tests and treatments for Maddie, and soon, their days consisted of appointments with her therapist, her nutritionist, her “stomach doctor”, and her tutor to make up for all the sick days she had to miss school.  It seemed she was always needing examinations by specialists, MRIs, injections, blood work, and, eventually, a residential treatment program for adolescents.  

By the time Maddie found her way to me at age 21, her life had become completely consumed by her illness.  She was feeling hopeless, demoralized, and powerless.  She sighed aloud just thinking about the years that stretch out before her. “Is this all there is to life?”, she asked with exasperation when we first met.

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I suggested to Maddie that she think of her life like a pie chart. For a lot of people her age, that pie chart includes a wedge for school, one for seeing friends or being with family, one for sports or an after-school job, and one for hobbies or other things that bring joy and meaning, whatever those things may be.  For older clients, those slices might include different things, like childcare and full-time work, but ideally, there is still a slice in there for things that make them happy.

I asked Maddie to think about what her pie chart consisted of day to day right now.  She had a ‘lightbulb moment.’  Of course, she was demoralized, her pie chart was all about “being a patient!”
If this has happened to you, please know that this is completely normal and it is not your fault.  For anyone who has been living with chronic pain or illness, your pie chart can - before you know it - become dominated by your identity as a “patient” or a “pain sufferer”, by all the activities required by whatever condition you may have.  Before you know it, your pie chart today looks nothing like it did before your pain came on.

This is not your fault, AND you can do something about it.

Once Maddie had sketched out what her pie chart looked like now, we talked about our job as fitting in a little wedge for things that bring her joy and meaning.  If we can begin to expand that wedge, we reasoned, we can begin to squeeze out the less fulfilling pieces of her identity pie.  We made a list of all the things that bring Maddie a sense of joy and meaning.  Her list was short at first, as she had trouble of thinking of more than three things: tending to the flowers and vegetables in the garden, playing with her dogs, and walking to the lake from her house.  So I asked Maddie to keep a “Joy List” and whenever she thought of things that made her feel good, she added to that list, even if they seemed silly.  

A week later, Maddie told me, “I know it’s weird, but I discovered all sorts of weird things I love, like when I get a new bag and organize all my things from the old bag into the various pockets of the new bag!”  Not weird, fun!, I said.  Whatever makes you feel happy, put it on the list!  Soon, Maddie had a long list, and her challenge was to fit something from that list into her day and notice how it made her feel.  

Maddie recently exclaimed that “over these last few weeks, I’ve made the “Joy” slice a little bigger day by day, and so there’s just been less room for the pain stuff to take up. Life feels more fulfilling, and I feel more empowered over what’s in my ‘pie.’  I do not feel like I am ‘just a patient’ anymore - I’m starting to remember there’s more to life than pain and illness.”

You too can begin to gain more control over what goes into your identity pie.  What would your ideal pie chart look like?  What slices would you like to make smaller?  What slices would you like to make bigger?  Do you have a slice dedicated purely to things that bring you a sense of joy and meaning?  If you are drawing a blank as to what could possibly go into that slice, try starting a Joy List.  Add to it whenever something strikes you as Fun or Fulfilling, even if it seems silly or strange.  What makes you light up?  The more you search for things to add to your Joy List, the more you will awaken that part of yourself. You can begin to wedge out the pieces of your identity that pain has made too dominant in your life.  Bit by bit, as you squeeze more and more into your Joy slice, you will find your life begins to take on a different, more fulfilling flavor. And if you need support on your journey to making yourself a priority, I’ll be here to help.