Testimonial: Living with cystic fibrosis, my way

Testimonial by Marie-Ève Beaulieu
Napierville (Quebec)

For a long time I believed that my story was different from that of others. Admittedly, I was prejudiced against those who, like me, were affected by cystic fibrosis. Looking back and especially because of more than unexpected events in my life, I understood that my ignorance and isolation were the main causes of these prejudices. I hesitated a lot before sharing my vision of living with the disease, probably for fear of being judged fairly. My recent hospitalizations as well as the various groups on social networks were a revelation for me. I realized that I was not alone in thinking that way. So, it is very humbled that I decided to share with you my perspective on the different stages of my life with cystic fibrosis.

Discretion: some good and some bad

I have always been very discreet when it comes to my health. Obviously, during my youth, the systematic hospitalizations every six months contributed to my condition being well known to those around me. As a teenager, I did most of my high school in the Sports-Arts-Études program. We had few students and, in addition, we were in a different wing from the high school. So, until the fourth year of high school, I always dated the same people.

It was in the fifth grade that things changed for me. I decided to leave this program in order to find myself in a regular class with people who were completely unknown to me. Nobody knew about my illness, and I loved it — I finally had the chance to be anonymous! It was also around this time that I started lying about my symptoms. When someone remarked to me about my cough, I used the excuse of a cold or allergies; immediately, the questions stopped, and I was not labeled as someone different.

Since no one suspected anything, I continued to do this until my last job. I had passed a technique in administration at CEGEP and I was lucky enough to get an excellent position as a financial advisor in a bank. Obviously, the stress of achieving goals at work, combined with the fatigue of building my house, meant that I started to get sicker. It goes without saying that my absences in the office have multiplied.

I then started to feel that the frequency and the reason for my absences were causing dissatisfaction among my colleagues, who were not aware that I had cystic fibrosis. Many of them having become my friends, out of respect for them, I had to tell them the truth. What a relief it was! I had a huge amount of weight less on my shoulders. I could go away without being judged — my colleagues even encouraged me to rest. Fortunately, what I feared the most didn't happen: I wasn't feeling sorry for it, and there was no talk of the disease. For me it was the best of all worlds.

Unfortunately, I had to stop working hastily for health reasons, but I have lasting memories of these good years. Indeed, I loved this short career, which I was quite successful, and which also allowed me to make great friends with whom I still have great adventures today.

My love life

Deciding to keep your health secret has its share of consequences — the difficulty of being in a relationship is a good example. As a teenager, I always preferred to remain single rather than have to explain to my friends what I had. I was convinced at the time that no one would want to have a sick girlfriend. Seeing the couples forming around me, I was a bit envious, of course, but determined to resign myself. It was easier for me to be alone than to have to share my secret.

However, life decided differently for me. So, during the summer of my 17th birthday, my first real relationship began with the man who would become my husband ten years later. As luck would have it, as I had known my lover since childhood, he already knew that I had cystic fibrosis. My daily life at his side was a long quiet river for many years — my health was unfailingly stable (at least, that's what I believed at the time), we were carrying out beautiful joint projects, in short, the future was smiling at us. We hardly ever talked about my health; he knew the main points, he knew that I had treatments to do and that I was very disciplined. I always preferred that he didn't see me doing my treatments because it was my way of not looking sick to him.

I was sincerely convinced that the disease would never affect me, to the point that I even took up RRSPs for my possible retirement... However, a pneumothorax during a hospitalization in December 2008 upset my plans. I was 26 then. Since surgery was required and my breathing capacity was significantly reduced, it was out of the question for me to return to work in this condition. Then, overnight, doctors started coming into my hospital room talking to me about a lung transplant. It was the first time I was told about it, so the first time my spouse heard about it.

So, in just a few days, we had to get used to the idea that this was the next step. I was so shaken by the news that I didn't immediately think about how my spouse might be feeling at the time. It was only when I started to get better that a feeling of guilt came over me for the first time. I then realized that I had not prepared my partner at all for all these challenges. However, I am an intelligent and down-to-earth girl, how did I not realize that I was living in the most total illusion about my future? Had someone tried to warn me about it and didn't want to hear it?

In any case, my life would never be the same again and I wanted at all costs for my spouse to feel free to leave if he did not want to go through all this with me. Fortunately, before I even told him about it, his choice was already made. So, it was in my hospital room, while I was on oxygen, with intravenous antibiotics and a chest tube, that he asked me to become his wife! In addition to an immense boost of energy, this wonderful news made me realize how important it is to have projects, regardless of their size, regardless of our state of health and our vision of the future, which, unfortunately, often seems to us not very good.

We have been married for almost three years. During these years, we had to deal with other health problems, I had to undergo delicate operations and spend many months hospitalized. I also had to put an end to my all-too-short professional career. However, we are coming out of it even stronger and more united, and we thank life for making sure that our paths crossed.

Motherhood, a heartbreaking choice

One of the biggest bereavements I will probably have to go through is motherhood. Of course it's my own choice. I realize that many women with cystic fibrosis still decide to give birth, and that's something I deeply admire.

I vaguely remember a doctor talking to me about the risks associated with pregnancy. Knowing my assiduity in following medical recommendations, I suppose this conversation made me decide to give up being a mother. Since I was quite young when I started my relationship, that my spouse already had a baby girl, and that he had not told me about his desire to have another child, I spent several years without asking myself questions about it.

One day we made the decision to leave our native Saguenay to move to the suburbs of Montreal; so I had to change my doctor. It was during one of the first meetings with my new pneumologists that I was told about motherhood. My decision was probably made official when we discussed the possible deterioration of my condition if I decided to have a child. I loved my life as it was, my health was very stable, and I was in love with a man who was content to have only one child. During this short decision-making process, I also considered that everything would go perfectly well during and after pregnancy, as that was also a possibility. Likewise, I thought carefully about the future and the harsh reality of my rather short life expectancy. I did not feel the strength to give birth to a child knowing in advance that I would put them through great trials and that they would probably have to deal with bereavement much younger than they should. I was also thinking about my spouse and I especially did not want to leave him with the heavy responsibility of having to raise this child alone.

Obviously, I sometimes get a little moved when I see my brother with his two beautiful children or when my girlfriends talk to me about the daily happiness that their offspring brings them, but I quickly console myself in the soft comfort of the arms of the one I love.

Positive thinking, my leitmotif

Meditation, yoga, esotericism and positive reinforcement are what I was immersed in since childhood. My dad taught yoga, did daily meditation, ran, and cycled hundreds of miles a year. My mother, for her part, was interested in numerology and was already interested in the power of positive thinking in the early 1980s. My parents obviously put their knowledge into practice just as the cystic fibrosis diagnosis was made. It is therefore with his extraordinary positivism that my father recorded his voice on a tape where he repeated over and over for hours: “Marie-Ève is in perfect health! ” So, from the age of three, when my parents put me on the clapping table in my room and played this famous tape, they were unwittingly transmitting to me the tools that would allow me to become a happy and fulfilled young woman despite illness and trials.

During a hospital stay a few years ago, I met a positive and very determined young woman who unfortunately lost her fight against the disease. I have precious memories of this encounter because it was it that made me realize that defining yourself as “fibrosis” rather than as a person with cystic fibrosis would not bring anything good. I always fought to not be perceived as someone who was sick and now I myself described myself as “fibrosis”. Of course, all this may seem fairly trivial, but since I believe that the subconscious mind records a lot of information, I decided that the disease would not define me: I have passions, interests, and it is my personality that I want to be remembered, not my health condition.

Positivism and the joy of life undoubtedly allow me to appreciate the small daily pleasures and to tell myself that, despite the fact that I am suffering from a serious illness, I would not trade my place with anyone and that no matter what happens, I will have lived my life as I wanted, without the slightest regret. Obviously, I don't pretend to believe that I've found the magic formula, but as my health has improved a lot in the last few months, I like to think that maybe I had something to do with it!

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