1. PRESENTATION TO CANADIAN PAIN SUMMIT April 24, 2012My name is Katie Robertson and I am 18 years old. My struggle with chronic pain started when I was 13. Sincethen 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 eventuallyI had them more often than I didnt. Just looking around a room was a challenge. It felt like someone waschipping away at my head with an ice pick and screaming in my ear at the same time. As more time passed Istarted to experience pain in my back, hips and then my foot until I could honestly say that I was hurting headto 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 inpain. It was suggested that I was just a teenager looking to get out of school. Hardly any measures were takento prove otherwise.It took me years to get proper care, or to even have the pain that I was in acknowledged by a healthprofessional. I was scared; I knew that something was wrong with me and that it wasnt being treated.I was afraid that the pain was never going to end and that my life was essentially over. For my mom, this wasdj vu. She had started her battle with chronic pain six years earlier, facing similar answers year after year. Iwatched her suffering like this for the latter half of my childhood, never being given proper care, never beingable to escape from the relentless reality of pain. Lucky for me, she was unwilling to let me suffer the samefate. She fought for me and for the answers that she was never given. She refused to believe in the lazyexplanations 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 finallydiscovered. My mom and I had done research on an old health issue I had suffered from, dislocated lenses thatled to me being examined for a genetic disorder. At the time, I was told that I didnt meet the criteria for thedisorder. We contacted the same doctors who had seen me when I was four years old and told them of my newsymptoms. Then we began the process of examination and testing. At 16, I now met the criteria and I wasfinally diagnosed with a genetic connective tissue disorder called Marfan Syndrome. My tissue wasnt doing itsjob 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 lifenow.Theres a certain mourning that came after my diagnosis. I had to grieve for the person that I thought I wasgoing to be and eventually accept that the pain, and all of the fighting and struggle that comes with it, wasntgoing anywhere. Its 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, oreven hold a steady job. I dont want to live my life in the shadows of chronic pain. I want to share myexperiences and maybe even one day my writing with anyone wholl listen, anyone who will think of what Ivesaid the next time they come across someone in pain.Ive had to fight adversity. The kind that comes with being different, being a teenager who went to the doctormore than she went out with her friends. Being someone who couldnt keep up with the world like she hadbefore. I realized how little people knew about chronic pain, and how little they understood about those whosuffer with it. Sometimes I found myself face to face with negative and unfair judgment, stemming fromignorance. Even now, there are some people who dont understand what its like to walk a mile in the shoes ofsomeone whos in pain and they dont care to. I think that education and awareness about chronic pain couldmake 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 withit. Over the years, Ive often felt like through experience and research that I know more about pain and howbest to manage it than many of those treating me. I think that if the prevalence of chronic pain in Canadasyouth was brought to light, maybe my symptoms wouldnt have been brushed aside so quickly and easily bythose who were meant to help me. And I hope that no one else in pain has to go through what I did. I hopethat by speaking out today, maybe the next child whos in pain will be listened to and taken seriously, instead ofbeing dismissed under the assumption that young people dont suffer from chronic pain.It has been a long road, these past 5 years. Through the ups and downs, the heartaches and discouragements,Ive learned a lesson of much more importance than ignorance; and thats 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 uswho live with chronic pain will improve.So many people that I never would have met otherwise, or connected with, have become my strongest andmost important supports. Were connected by things stronger than friendship, were linked by resilience,perseverance, and a constant reminder of the things that matter the most. Things dont always go how weplanned or expected, and its okay to be disappointed and to struggle with it, but Ive learned that even a badsituation can bring good experiences and opportunities that we could have never imagined. For instance, here Iam, across the country, speaking out for myself and so many other people living in pain.Its been a long journey, and Im nowhere near finished. I no longer remember what it feels like to spend a daypain free. And yes, my life has changed almost entirely in the past five years, but it hasnt ended. My hope isthat more people, more doctors, get educated about chronic pain and how to properly manage it. With thatsupport, itll 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.