What You Need to Know About Romance, or the Lack of, When You Have CF
I’ve been single for a year now, and I’m darn proud of it. I didn’t think I could do it, and I’ve grown so much because of it.
From ages 17 to 24, I was with a wonderful person. It was us against the destructive titan, cystic fibrosis. We fought side by side, not against each other. Our relationship seemed untouchable, except by the trial of me getting better, healthier. People think of “sickness” as being the complex part of “in sickness and in health.” But once I recovered from my end-stage CF and deafness — through my transplant and cochlear implants — we realized our goals and priorities had drifted apart. I had been dependent upon her, and she’d found identity in caring for me. The dependency was suddenly unnecessary, and so our roles in the relationship shifted.
Ironically, we agree that breaking up was the best thing that could have happened to our relationship. At first, I plummeted, devastated. But like an arrow pulled back, back, back, I shot forth with intense velocity toward aspirations and missions I’d previously never imagined achieving. In my relationship, I was comfortable. Once I left it, I needed to dive into discomfort, which led to epic adventures.
She and I remain close friends — she even offered to buy me a concert ticket for our “breakupiversary.” How could we not feel a continued bond after she supported me through those countless days in the hospital, transplant, and deafness?
Here’s what I learned from that relationship and while flying solo:
Dating ain’t easy
In the graphic novel “Scott Pilgrim,” a Canadian dude crushes on a girl named Ramona Flowers and must battle her seven evil exes to date her. Being with a CFer is like dating Ramona. Perhaps the seven evils are prednisone rage, limitless vomiting, mucus (lots!), sterility and infertility, traumatizing hospital stays, mental health crises, and … fear of planning for the future.
A nurse said that, on the bright side, I will stay looking young forever (a CF stereotype) and will never get “fat like most middle-aged men.” Shrug.
Relationships can motivate
I didn’t consider lung transplant until I was in love and found the will to live. Before then, I didn’t care much for life because I didn’t feel it was worth the investment. In hindsight, that’s a load of malarkey. But my girlfriend at the time served as my motivator. I got the transplant because I dreamed of the future — unafraid for the first time in years. Although we didn’t stay together, I love my transplant life, and I’m relieved I took the tough track to thrive.
Or relationships can be your undoing
Be cautious. I’ve known many who lost interest in life after a breakup. Be loyal to yourself before you become loyal to someone else. If a relationship ends, you still need the will to take care of yourself.
Be OK with singleness
After my breakup, I struggled to realize what I’d fought for. I downloaded dating apps against the advice of my friends who said I needed to focus on myself for a while. I felt like I needed to leap into a new relationship to reclaim self-worth. With terminal illness, it often seems like I’m racing the clock. But, dude, I’ll have many years ahead because I have learned to love myself enough that I chase life without pause. I am my motivator.
I haven’t entered any romantic relationships since the breakup. That’s good, for now. While single, I’ve traveled every few weeks, picked up new hobbies, worked on building self-esteem, pursued volunteering opportunities, and deepened friendships. Most importantly, I spent money I’d usually spend on a girl … on truly exceptional food. Treat yo’self.
Have high standards, then go higher
Before things get serious, inform the person you’re dating about your disease. Give them a respectful chance to back out if they don’t think they can handle a life with chronic illness — this can save both you and them heartbreak. That may feel unfair to you, but it’s better than being in a long-term relationship with someone who isn’t prepared for your life storms.
Your life is hard enough, so don’t waste energy on someone who doesn’t treat you special. Find someone who is open-minded, determined and relentless, patient, optimistic yet realistic, humorous but respectful. An advocate, a caregiver. A tall order, but a good order.
Six years into my relationship, I discovered that love does exist, even if it morphs into pure friendship. I learned the ideals of a caregiver and how to navigate dating in CF’s shadow. In the year since, I found myself and the adventures that made me thrive. Relationships can be great for a person with CF, as can singleness.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.