Testimonial: A rollercoaster relationship

Falling in love is not always easy and once it touches us, we fly.

We already knew each other and I knew he had cystic fibrosis. Having graduated in nursing, I went over the subject and at the time the fateful age had shaken me up. How could we give people without them choosing a “deadline”?

Time has taken its course and our couple has formed. Our relationship was not built with this possibility in mind. I did not fall in love with a sick man, but with a guy who goes for it, who faces and sometimes confronts life. This attitude probably comes from the fact that his whole being pushes him to LIVE! Live without worrying about the worst that is possible, but about the present that is REAL.

Living with someone with CF means enjoying adventure and being constantly challenged.

My lover opened his heart to me and won me over with his humor, his sarcasm, his burning taste for life. To live with him is to live in a roller coaster of emotions. It's having to let go of some fears in order to build goals. Sometimes we have to turn a blind eye to thoughts that hurt us. You have to stay strong next to the person who is proud and who does not seem to be affected by the disease.

We have experienced hospitalizations, multiple appointments with his multidisciplinary team. There were disagreements because the “nurse” who told me “tired” him when I found that he did not seem to care enough about his treatments and follow-ups. The nurse works in the hospital, but the one who cries, the one who screams in silence, the one who is afraid, it is the WOMAN who shares her life. It's my fault because I want to live with him at all costs and for many years!

YES, we are on the tip of a dock and with every strong wind we can fall.

We don't have to be married to live a beautiful union for “better or for worse.” My boyfriend was worried when we started that I would fall in love with him because he didn't want to make me go through the pain and suffering of his illness. I made him understand quite quickly that I was not there, that for the better and that I would not give up at the worst times. I am here to share her joys and her fears. We don't live with fate in mind, but with LIFE!

Several people keep telling me “Oh you are young, wait until you are my age” I answer them “know that it is a privilege to be at your age because some people do not get there”. Their face, speech, and perception change as they tell me, “You're right.” He seems “healthy” and in great shape, if you knew how super powerful he is in his condition.

I am proud of him because he never stops biting through life and pushes himself more and more. I would be lying to you if I said that I don't fear anything when I see that he is more symptomatic. That I am impatiently waiting for the results of his FEV1 at each of his appointments. I need to take a step back for him, but he needs to know that it's for love. I care about him and his life. He is not alone and we need to think of TWO.

Helplessness is a feeling that both the person affected and the family can experience. The disease is a boomerang and we would like to do more, but CF or not we need to join forces with medicine and science. My man is doing well and is living at full capacity (if I may allow myself to play with words)

A testimony from Christine
Spouse of a person living with cystic fibrosis

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