Suleika Jaouad Empowers Cancer Survivors: Navigating the Journey with Compassion and Wisdom

um so I was diagnosed almost exactly after uh one year after I graduated from college uh but my story did not start with the moment of diagnosis it started long before it started with the months and months and months of misdiagnosis of sensing that something was wrong and desperately craving answers um I was first diagnosed with leukemia and reassured that this was perfectly common in young women and sent home with iron supplements which of course did not work um and as I started to fall sick with colds and bels of bronchitis um I ended up in the hospital where doctors ran every test they could think of except for a bone marob biopsy which they didn't feel was necessary for someone of my age and ultimately I was released the diagnosis of burnout syndrome now something about burnout syndrome didn't add up for me but I think like a lot of young women um and like a lot of people I felt this sense of intimidation um when in the midst of a doctor I felt like I haven't gone to medical school who am I to question this diagnosis and yet I knew that what was happening in my body was not a factor of pushing myself too hard um and I started to believe not that something was a Miss in my body but that something was wrong with me I really felt like I was losing my grip on my sanity and that's what happens I think for so many of us um when the actual journey to destination is a long drawn out one um and it was also when I did get that actual diagnosis of leukemia um my first indication that no matter how brilliant and caring your medical team might be you have to learn to become your own Advocate and I learned that lesson again and again and again over the next four years of treatment um but very early on in um that Fay intoo I also realized how no two patients are the same um we bring to the illness our own individual set of gifts and also of challenges be it Financial or personal or support system related um and when I learned that I was going to be admitted to the hospital to undergo chemo I did what most patients do which is to hit up Google uh to get a sense of what lay ahead and I learned in that Google Search right there sandwich between hair loss and nausea that one of the side effects of my chemotherapy was infertility now this came as a great shock to me um because my doctors had never mentioned anything about infertility or fertility preservation Services um and also because at 22 I hadn't really even given thought to becoming a mother other than how not to become one before I was ready um and you know I understand that oftentimes cancer is the priority in the emergency um but for me preserving that possibility of becoming a mother someday felt really important to me it felt like a kind of hope uh to preserve that choice for my future self and maybe more than that to believe that I would exist in that future now we talk about individualized medicine about personal medicine um but I think so much of the challenge of living with cancer um aside from you know the many physical side effects are really figuring out how to hold on to some sense of self how to not only survive but to actually live um and so that really became my challenge in my early 20s and it's remained a question that I'm continuously trying to find new answers to I learned early on that one of the great unfairnesses of cancer is how uncomfortable it can be for the people around you um you know there's a reason why when someone is befallen with tragedy our first response is often I have no words um and sometimes when you don't have words when you're worried about finding the exact right words um you end up saying nothing at all and staying away because of it and that was something that um I found really heartbreaking early on uh after my diagnosis um to realize that the people some of the people I expected to be there for me um were not going to be able to for different reasons um and there was this sense of feeling increasingly disconnected from the land of the living I stopped going on social media because it was painful to see my friends you know starting careers and traveling the world and getting married and all the other big and small Milestones of early adulthood um and for about a year I very much went into a kind of self-imposed retreat I didn't know how to face my reality which made it hard to explain it to the people around me who hadn't lived it um and really you know that's what set me on the path of writing was trying to find those words um yearning for a space where I could talk about the things that felt impossible to talk about everything from infertility to early onset menopause because of chemotherapy to the experience of navigating a romantic relationship when you're navigating an illness um to the maddening part-time job that is dealing and negotiating with health insurance I wanted to write all of it and when I first started that process it was in the privacy of my journal but what I found in the course of writing my story in my own words on my own terms is that I felt lighter afterwards I wasn't carrying so much in privacy and and the isolation of my body and there was a kind of clearing sense that I had and again this was not fancy writing it was Journal writing it was purely for myself um but in trying to describe those things I better understood them and that made it easier for me to communicate with the people around me um you know I think so often um when you receive a cancer diagnosis there's a thing that can happen where everyone puts on a brave stoic face for each other because we want to reassure reassure each other and that was true of me and that was true of my parents and some of my friends but what happens when everyone is trying to put a brave stoic face for one another and and to nurse those fears and private is that um you end up not being able to communicate openly and so once I was able to take the initiative to say I know this is scary I know this is hard but I want us to be able to talk about the things that scare us and the things that are hard um this miraculous things started to happen I had some of the deepest most powerful conversations of my life in that hospital room and while perhaps some of my friends um stayed away uh I began to meet fellow patients I began to meet all kinds of people old classmates teachers um strangers on the internet um who really showed me what understanding and empathy looks like and raised the bar for the cutting person I want to be when someone else is struggling [Applause] [Applause] [Applause] [Music] we new [Music] [Applause] beautiful [Music] [Music] hey even love that's beautiful [Music] [Applause] [Applause] w

Channel: Truth Be Told - Jon Batiste TV

Views: 3,136

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Id: wIGPetu4pEY

Length: 12min 21sec (741 seconds)

Published: Tue Apr 23 2024