1. Do you have a primary diagnosis, if so, what is it?
A: My primary diagnosis is cystic fibrosis (CF). That has brought along quite a few other diagnoses with it over the years. I also have cystic fibrosis related diabetes (CFRD), GERD, IBS, cystic fibrosis related liver disease, sphincter of oddi dysfunction, generalized anxiety disorder, and depression.
2. How long did it take you to get diagnosed?
A: I was diagnosed the day I was born. I had meconeum ileus, which is often a presenting symptom of CF, so after having surgery at 1 day old, they tested me and diagnosed with me with CF.
3. How did you feel when you were first diagnosed? (ex: relieved, upset, numb?) What was the first thing you did?
A: I can’t answer this because I wasn’t able to understand, being just a few hours old. I do know though that as I got older and started to realize that my classmates didn’t need to take pills with their meals, and that hospital visits every 3 months weren’t the norm. With this awakening, at about 5 years old, I started to grasp the concept that I was different than everyone else. I didn’t make the connection that I was sick, I don’t think I was old enough to understand that concept, but I did begin neglecting pills at school, or hiding to take them at lunch and snack time. I wanted to be normal. In my teens, as I got sicker and my disease progressed, I came to be upset about my diagnosis. How could it be fair that I had to wake up earlier than everyone else before school so that I could complete my treatments (1 hour of inhalation and PEP therapy to clear my lungs), and, conversely, stay up even when I was exhausted to do another session before bed? My life and my days were defined by treatments and medications rather than by crushes and sneaking into movies, and as a teenager I wasn’t happy about it at all.
4. What advice would you give to someone who is chronically ill but undiagnosed?
A: When you know something is wrong you need to keep pushing the system to help you. Unfortunately those without a diagnosis are mistreated by most of the medical profession, and this isn’t right. Your intuition and your gut feeling are always right, so don’t take no for an answer. I know it’s hard to keep facing rejection and patrionization, but you’re your own best advocate.
5. Has your chronic illness changed your perspective, and if so, how?
A: For sure. My chronic illness defines every hour of my life, how could it not affect my perspective? I think I appreciate things more, especially the good days. I was once on a hike with a friend and found a river. I was so excited to see that kind of beauty and feel the cool water coursing between my fingers – but my friend just asked when we could continue walking. I love seeing a full moon, I love petting every animal I can, and I try to utilize every good day that I have to make the most out of life. It has also, I believe, aided in my perspective of those who are marginalized and discriminated against. I do all that I can to fight for the rights of others. Maybe I see the world differently than those without a chronic illness, but if I can use my experience to help others, then why not?
6. What moment are you most proud of in your chronic illness journey thus far?
A: It hasn’t happened yet. Once the provincial governments in Canada finally implement coverage for Orkambi, Symdeko, and other medications for rare diseases that truly change the lives of patients.. then I will be proud. Until then I fight to be heard. Being on Orkambi has changed my life, and I don’t believe that keeping it from other patients is right. They deserve the opportunity to feel good again, like I have.
7. What was your hardest (or lowest) moment, mentally and/or physically, that you’ve been through on your journey
A: Probably when I was expelled from a field experience when I was in university, getting my bachelor in education. I was teaching alongside a veteran teacher at a local elementary school. The rules of the field experience stated that a student teacher was allowed to miss 4 days throughout the 3 month work experience, to be made up at the end. I missed 1 day due to being allergic to a new medication, and I emailed the teacher I working with to explain the situation. In her reply she was so kind and even suggested that I also take the following day off, seeing as it was a special event day for the school – there would only be a half day of teaching. The extra full day would help me feel better, she assured me.
I followed her advice, and the next morning received an email from my university telling me not to return to my field experience; it had been cancelled by the elementary school. I was shocked and horrified. I made phone calls because I was sure this was a misunderstanding. However, after several calls I realized that I had been wrongfully dismissed from my field experience. To this day I am not entirely sure who is to blame; the principal of that elementary school, the teacher I was working with, the director of student teaching at McGill University. But I know now that this was discrimination due to the fact that those in power in my situation did not fully understand cystic fibrosis. I believe they were scared of having a sick person in their school- if only they knew that the children were far more dangerous to me than I could ever be to them.
I had to fight my way back into my whole program, I even had to get my doctor to write a letter saying I was healthy enough to go back to school (I asked her to come with me to the meeting with the director at the university as well). I lost out on a whole semester because some people didn’t understand my diagnosis. Without consulting me they asked me to not return to the school. Writing about this now makes me feel sick all over again. I only wish I had the voice I do now, to speak out against injustice, back then.
What happened to me was wrong and stemmed from lack of information and fear, I now try to advocate to make more people aware of what CF really is – so horrid things like this happen less and less.
8. What or who has helped you the most during the lowest days?
A: My cats, Harry Potter books and movies, my family and my boyfriend.
9. If you had any words of advice for someone struggling with a similar diagnosis, what would they be?
A: We are a whole community online, some of my best friends are online friends. I know it can seem lonely at night in a hospital bed, but the morning always comes.
10. What would you like the world to know about life as a chronic illness patient?
A: It is going to sound cheesy but there are so many of us with invisible illnesses, so be kind to everyone you meet.
By Chelsea | @Chelseacgagnon