1. PRESENTATION TO CANADIAN PAIN SUMMIT – April 24, 2012
My name is Katie Robertson and I am 18 years old. My struggle with chronic pain started when I was 13. Since
then my life has gone down a path that I never imagined it would.
The pain that became the most disruptive was in my ribs. It felt like they were literally on fire, always aching.
Sitting for any length of time quickly became unbearable. I started getting headaches regularly, until eventually
I had them more often than I didn't. Just looking around a room was a challenge. It felt like someone was
chipping away at my head with an ice pick and screaming in my ear at the same time. As more time passed I
started to experience pain in my back, hips and then my foot until I could honestly say that I was hurting head
to toe. At first I was told by a pediatrician that there was nothing wrong with me, that the pain was in my head.
Here was this 13 year old seemingly healthy girl, who loved school and sports, and who had no reason to be in
pain. It was suggested that I was just a teenager looking to get out of school. Hardly any measures were taken
to prove otherwise.
It took me years to get proper care, or to even have the pain that I was in acknowledged by a health
professional. I was scared; I knew that something was wrong with me and that it wasn't being treated.
I was afraid that the pain was never going to end and that my life was essentially over. For my mom, this was
déjà vu. She had started her battle with chronic pain six years earlier, facing similar answers year after year. I
watched her suffering like this for the latter half of my childhood, never being given proper care, never being
able to escape from the relentless reality of pain. Lucky for me, she was unwilling to let me suffer the same
fate. She fought for me and for the answers that she was never given. She refused to believe in the lazy
explanations that uninterested doctors were so eager to hand us.
We fought for my health and to be listened to long and hard, before the reason for my pain was finally
discovered. My mom and I had done research on an old health issue I had suffered from, dislocated lenses that
led to me being examined for a genetic disorder. At the time, I was told that I didn't meet the criteria for the
disorder. We contacted the same doctors who had seen me when I was four years old and told them of my new
symptoms. Then we began the process of examination and testing. At 16, I now met the criteria and I was
finally diagnosed with a genetic connective tissue disorder called Marfan Syndrome. My tissue wasn't doing its
job and in a sense, my body really was falling apart.
I realized then that the illness I had was chronic and that it would always be there. Pain was a part of my life
now.
There's a certain mourning that came after my diagnosis. I had to grieve for the person that I thought I was
going to be and eventually accept that the pain, and all of the fighting and struggle that comes with it, wasn't
going anywhere. It's not easy, but I try my hardest not to give in to it. Sometimes though, the future scares me.
Sometimes it seems dark and uncertain. I fear that my pain may keep me from being able to have a career, or
even hold a steady job. I don't want to live my life in the shadows of chronic pain. I want to share my
experiences and maybe even one day my writing with anyone who'll listen, anyone who will think of what I've
said the next time they come across someone in pain.
I've had to fight adversity. The kind that comes with being different, being a teenager who went to the doctor
more than she went out with her friends. Being someone who couldn't keep up with the world like she had
before. I realized how little people knew about chronic pain, and how little they understood about those who
suffer with it. Sometimes I found myself face to face with negative and unfair judgment, stemming from
ignorance. Even now, there are some people who don't understand what it's like to walk a mile in the shoes of
someone who's in pain and they don't care to. I think that education and awareness about chronic pain could
make all of the difference to us who suffer from it.

2. Had my peers, my doctors, my teachers, known more about it then I may not have felt so alone in dealing with
it. Over the years, I've often felt like through experience and research that I know more about pain and how
best to manage it than many of those treating me. I think that if the prevalence of chronic pain in Canada's
youth was brought to light, maybe my symptoms wouldn't have been brushed aside so quickly and easily by
those who were meant to help me. And I hope that no one else in pain has to go through what I did. I hope
that by speaking out today, maybe the next child who's in pain will be listened to and taken seriously, instead of
being dismissed under the assumption that young people don't suffer from chronic pain.
It has been a long road, these past 5 years. Through the ups and downs, the heartaches and discouragements,
I've learned a lesson of much more importance than ignorance; and that's compassion. Being in pain constantly,
as hard as it can be, has not only taught me far more empathy and compassion than I could have ever imagined,
it has also allowed me to feel the kindness and compassion of others. And if we can spread that compassion,
through awareness, to not only the doctors who treat us, but the people who surround us, then the lives of us
who live with chronic pain will improve.
So many people that I never would have met otherwise, or connected with, have become my strongest and
most important supports. We're connected by things stronger than friendship, we're linked by resilience,
perseverance, and a constant reminder of the things that matter the most. Things don't always go how we
planned or expected, and it's okay to be disappointed and to struggle with it, but I've learned that even a bad
situation can bring good experiences and opportunities that we could have never imagined. For instance, here I
am, across the country, speaking out for myself and so many other people living in pain.
It's been a long journey, and I'm nowhere near finished. I no longer remember what it feels like to spend a day
pain free. And yes, my life has changed almost entirely in the past five years, but it hasn't ended. My hope is
that more people, more doctors, get educated about chronic pain and how to properly manage it. With that
support, it'll be easier for those in the darkness of pain to see the light at the end of the tunnel. And one day,
things will start to change, for the better. Thank you.