This photo was not chosen because it is a personal favourite or because of how I look but for the time it represented in my life. You see this photo was taken a year before I received news that would change my life as I knew it. I can starkly remember the day and the details. It was June 13th, 2012 and as everyone was wishing me a happy birthday and telling me to live it up, I was preparing for a procedure that would hopefully give me the answers to all my questions.
Then on June 14th the day after my 20th birthday I got the results of the colonoscopy I had undergone earlier that day. “You have a mild case of Crohn’s disease,” the Gastroenterologist told me. Was this the answer to all my questions? Was this the reason I had been feeling perpetually exhausted to the point of collapse? Was this the reason I was going to the bathroom over 14 times a day and every time I would bleed? Was this the reason that when I went to emergency in agony and the doctors concluded it was nothing? He gave me a run down of what it was and yes there is a chance of escalation but we’ll start you on medication. We will set you up with a nutritionist and get the needed blood work, shots done in preparation, just in case.
But little did I know that this diagnosis would alter my course and put me on a different path. This was only the beginning, there was so much unknown and I had no idea what to expect. In a two-year period I went from a mild to a moderate/severe case. Within another two years of that escalation I would need emergency surgery and an appliance to avoid my colon from rupturing. My doctor (I felt) essentially blamed my latest complication due to the fact that I simply didn’t agree to his regime of treatment. How I felt at the end of the appointment was he saying, “if you only had agreed sooner, acted quicker and not as defiant this wouldn’t have happened.”
What the professionals often forget (I feel) is that there is a person inside of each patient. When a 20 year old is given a diagnosis and handed all this information there is little foresight on how this will impact their life. What the doctors may not know when they were telling me to switch medications and irritated because I was hesitant to switch treatments, there was a reason. I was not trying to be reluctant or defiant, but I was scared. Scared of the repercussions of taking some medications that don’t even have long-term research to back it up because they have been created within the last decade. I was afraid of how this medication would impact my body, because when you are a 19/20 year old all you want to do is fit in and belong. I was feeling frustrated because I would no longer be a carefree young adult and unsure of what the medication maintenance will entail (injecting or infusions, blood work to name a few). I was feeling angry because this will dictate what I could and could not do, tie me down in ways I never desired or even asked for. I was feeling exhausted because this is a 24 hour job, seven days a week, 365 days of a year with no option to opt out. There are hundreds of decisions I need to make everyday and each one could have potential consequences.
But throughout this process I have begun to experience compassion for the people working in this field. It can be a rewarding and heart-warming but also filled with: pain, frustration and complexity. I forget that these people are human too, burden with an ever-growing need and with diseases that have no simple answers. Crohn’s can morph and change in weeks or months by a flip of a coin in ways that doctors can’t always predict or plan for. This disease can confound people with even the most in-depth experience, and leave no easy choices. They don’t have a straightforward map he or she can use with each patient. There are no guarantees that the Doctor’s bag of tricks will give you the health and stability each patient craves.
Reflecting back on it now if my Gastroenterologist had told where this road would lead me to I probably would have laid down on the floor, curled up in a ball and not gotten back up for a long time. I didn’t feel strong enough then and sometimes I am still don’t feel strong. There are times where I cry and wallow, but now I have learned how to keep going. I have begun to transcend into a place of acceptance, I have started to understand what strength means. Strength isn’t what you do or say in the absence of fear, but when it is crowding you and what you choose to do with it anyway.
So when I look at everyone involved in this process, I try to show compassion for us all. None of us asked for this, no one desired or even imagined where this journey would take us. But we are here, like it or not, love it or hate it this is the one body that I have been given. But we are here, like it or not, love it or hate it this is the one body I have been given. I have started to exercise compassion and love for everyone involved, but most of all myself!!