Testimonial: Coming of age with CF, a great challenge!

Testimonial by Amélie Payment, published in SVB number 45

September 2021

Becoming an adult: what does it mean? Becoming an adult is above all a change! However, the cystic fibrosis clinic in Sainte-Justine prepared me for this event. Despite that, I still had difficulty dealing with this new reality. For me, the basis of an adult life is to make decisions and also to deal with big events. This is resolved through instabilities, identity explorations and, for some, it is also falling in love. In short, adult life is about making choices and taking responsibility for them. Now, when adult life combines with CF, it's more of a challenge. As in my previous columns, I have already expressed the fact that having cystic fibrosis means more autonomy and responsibilities. Now that I have reached 18, I can now share my experience with you.

August 9, 2021 was my official entry into REAL life. A mix between feeling big and small at the same time. I was an adult. No more children or teenagers. I had the feeling of freedom that was at its peak. Then a few minutes later, the return to reality hit, the hospital tried to call me... That's having an illness, there is always a little something to come back to Earth. In my case, this call was for my follow-up appointment. In addition, having become an adult with CF, I now had to receive calls and organize myself with an agenda. My day of celebration was not even over and my autonomy was already being tested. The same goes for my medication, I knew when my jars were empty, but in addition I was responsible for calling the pharmacy and picking them up in my car. Again, I had to adapt to the way I managed my time. Between school and work, I really had to be diligent with planning my activities.

Organizing my medical appointments was the first step in dealing with my new lifestyle. The second is probably the biggest piece: my hospital transfer. Leaving the specialists who had followed me since my first months of life to go to an establishment full of strangers. I didn't realize that I was leaving Sainte-Justine until I set foot in the CHUM. It was at that moment that I really realized the detachment that I was being asked to do. During the entire visit, I was anxious. Was it the imposing building that gave me time to shiver? I didn't know it at the time, but now I know it was a shock. On the other hand, I understand that having such a feeling was normal since a hospital is much more than a place where doctors prescribe medication. With the disease, I think I am speaking on behalf of several people living in the same situation by saying that my hospital represents a home and a family. The connections between people with CF and specialists are much deeper than between a person and their doctor, whom they see once a year for a sore throat. So yes, separating from those who have accompanied me for so many years was like cutting an umbilical cord. Besides, if you are a sensitive person like me, it must have done the same to you.

Coming of age has also strengthened my beliefs about love. When I reached my current age, I understood the importance of having a companion I could rely on. Because yes, loving and being loved is entirely possible even when you are sick. I would even say that with the disease, it brings a slightly deeper and sincere link between one and the other. My boyfriend comes with me every day when I have to make a short visit to the hospital. It is very important, in my opinion, to have a boyfriend or girlfriend who goes through everything that you are going through as well.

So that's what concludes my adaptations on my biggest challenge to date: being an adult with cystic fibrosis. Turning 18 represents change. Whether it's the good or the bad, I'm going to do what I've always done, adapt. Organization and autonomy may be difficult to manage at first, but that will never make me less courageous.

‍