Have you ever felt lost in the world of healthcare like you are going in circles.? A voice unheard? Drowning, suffocating, going round and round, not knowing where to start. That was me, that was my mother. I learned at a young age how to navigate the emergency. I wasn’t really paying attention when I was sick and young. I went to Mayo clinic when I was 16. My mother tried hard to diagnose me before she died. When she turned 45, she was diagnosed with cancer. It was my turn to flip it around and navigate the emergency room for her, the lab department, the hospice care, so many different departments. To learn the lingo, medical terminology. You don’t actually appreciate how much you learn until after—even planning a funeral at age 20. I look back now as a parent; it was education for me.
My kids were diagnosed with blood disorders, and at the same time, so was I. Let me tell you I had to learn how to navigate the world of healthcare like I can’t tell you. It’s tough! I went to conventions in Vancouver to learn like a sponge about bleeding and how to talk, and because of this, I was able to stick up for them and bring them to Sick Kids in Toronto. I learned the power of the word NO, I learned how to talk to teachers, how to show my factor card and not feel bad and “jump lines” in emerg, you can’t see us bleed on the outside. I would tell my kids never to look back, don’t feel bad it’s ok, but I wanted to cry because I would hear parents get mad seeing us go through, and that’s me as an adult now. But I need my needle or blood to stop bleeding. It’s not something I carry on me like a diabetic.
I learned how to talk to teachers. I had to read a book to a classroom about hemophilia at one point because information was sent out that shouldn’t have about my son. When you have a blood disorder, you are forever correcting people about what is right and wrong. People do not pay attention to your file or what you can or cannot do. They are scared of touching you, bumping you, playing with you as a kid; there is miscommunication everywhere. Even as an adult, I can have a medical procedure and have to remind them before and after of what I can and cannot have. We cannot have aspirin or any form of anti-inflammatory medications. It is not up for discussion, but yet there I am discussing it. Sometimes I have even called up to hematology to outsmart an ER dr. I will not even let anyone fill out a prescription for me. I need to be completely aware and awake from surgery to look at it because, you guessed it, mistake- someone not paying attention to my chart.
I have stopped my son from having his wisdom teeth done because his bleed medication was not ordered and administered on time. The office staff and Dentist actually thanked me for not screaming but bringing attention to the importance of the lack of communication surrounding procedures in the office with such vital cases. This was the first time I allowed someone to provide the medication my son needed. Not only did I get a tour after, but I was also offered a job in the office. I cannot, he cannot, we cannot have any form of anything that makes us bleed. You get tired of reminding people, but this is our life. Like that day, I showed my son that we need to remind people to pay attention to our charts, files, Netcare, reports, whatever’s in front of them. I am the type of person that solves a problem, not create it.
I take care of my dad, not physically, but after my mother died, I promised to be there for him. Well, let me tell you this past year has been difficult. I’ve had to stand up for him not only in emerg where I could not stay with him but having a language barrier being an ethnic senior they cannot understand and articulate properly. He was in a car accident, so I dealt with the officer for him, the same thing. You need to bring them to all these medical appointments in a covid world they don’t understand. It is so not fair for them, and it is my job to stand up for him, explaining it in a way he doesn’t think I will get in trouble, where he understands that if I don’t try and make a difference, next time the Dr might not have the same outcome with the next patient.
You see, in my line of work, I’m used to solving escalations—the keyword solving, not creating. Everyone makes mistakes, but in this world, we need to work together to be part of the solution.
Healthcare right now especially is not easy to navigate. From doctors’ appointments to biopsies, to emergency rooms, to results, to covid screening, wearing masks, fogging glasses, our elderly parents being separated from us, our children, ourselves. Bring your voices forward and be heard so that it truly solves the problem when you are heard. I finish each call, each procedure with a thank you so they know I heard them, and they heard me.
If you ever have questions, I advocate for health. My dad saw this, especially after the week we had! I will advocate for poor working conditions, for proper healthcare, how you treat the patient, and especially when we cannot be with them. I always look at the glass half full and what lesson can I learn from this experience? I always thank my work experience for how I’ve learned how to deal with people and my life experiences for dealing with healthcare.