Like most young girls, I spent hours dreaming of the day I would meet a man and fall in love. Romantic dates, wedding dresses, and images of happily ever after danced through my head. All the while, the nagging question underneath; “But can a girl with who is so sick have all those things?”
Dating isn’t easy for anyone. Proof of that can be found simply by visiting the “self-help” section of any bookstore! Whether we are trying to figure out the “rules” of dating or understand the differences between “Mars” and “Venus”, there clearly are a lot of people in need of guidance on the topic. Most of us reach a point in our lives when we deeply desire a partner and rarely have a smooth journey in finding, or for that matter, keeping one.
Acknowledging the already challenging nature of love relationships, it is no wonder that adding the difficulties of illness into the equation can create another level of complexity. As a young girl seeking love, I made many mistakes. As a young CF girl seeking love, I made many excuses. Using trial and error as my guide, I continued to make mistakes and excuses well into adulthood. There aren’t many role models out there for such a situation and I fumbled desperately in the dark.
A confident person in most of life’s arenas, my “relationship self” never seemed to match with the rest of me. When talking to boys, my focus was on saying what I thought he wanted to hear. All I cared about was getting him to that like me and become my boyfriend. It never occurred to me to question whether or not I liked him! In relationships, I was submissive and often was talked down to and told what to do. Inside, I knew that wasn’t right but I couldn’t bring myself to “rock the boat”. Deep down, somewhere along the way, I developed an unconscious belief that I had to trade his bad behavior for him having to “put up” with my illness. I was often in a state of vulnerability and weakness. That state of mind led me to do things I wouldn’t have done had I been true to myself. It allowed me to be in verbally abusive, long-term relationships and to hang on to those relationships out of fear of never finding better. Many women have walked a similar path that I am describing, but Cystic Fibrosis was a large driving force behind why it was so difficult to change these detrimental patterns. There was unaddressed anger and sadness there and I often looked to men to make me feel alright about my disease. That never worked! With some counseling and a determination to be loved the right way, I eventually found my way out of that confusing maze.
Example 1:
In 1998, I was living in beautiful San Francisco waiting for the call that I was high enough on the list to move back home and get new lungs. There, I met the type of man most women feel compelled to try and tame: the classic bad boy. His name was Joe and he was not like any other man I had dated. He was tattooed and pierced. He rode a motorcycle. He was in “the scene” and knew all the cool places to go in the city. He had a shady past filled with drugs and other disconcerting choices. Somehow, that was all made right by his devotion and unexpected sweetness. I fell hard.
We dated for about a year, all the while my health was deteriorating. When I got the news that it was time to move back east to wait for my transplant he was very supportive. He owned his own business and arranged to take long leave of absences every few months. He was going to stay with me and be there when I was healthy and back on my feet.
He came to visit me once. After that, the strange phone calls began. We argued and I cried. He wasn’t making much sense and I couldn’t quite figure out what was happening. In the end, I learned he had found someone new and he finally broke up with me. It was a messy brake with lost of calls and wavering. My heart was broken.
All the signs were there, had I chose to read them. When I stopped being able to go out dancing he wondered how he could be with a girl who couldn’t “give him what he needed”. He was an ex-drug addict who had replaced cocaine with a girlfriend. That girlfriend happened to be me but I was easily exchangeable. When he traded me in for a newer model, it made sense but it hurt like hell.
I felt abandoned. I was in perhaps the most scary and vulnerable position of my lifetime and I had been left behind. Worse than that, I felt ashamed. I blamed his decision to flee on my weakness. Worst still, I felt his behavior was justified. I had been dumped by someone I loved and I felt like I deserved it.
When I look back, I feel sad for that devastated girl who cried herself to sleep when she should have been saving her energies for the awesome journey that lay ahead. I feel sad for the girl that let a man make her feel invalid because of an illness beyond her control.
After the transplant, Joe came back. He wanted to move to the east coast and “make it work”. Apparently, things were not going well with his current female obsession and he was back on drugs. I laughed and said “too little, too late”. There was surprisingly little satisfaction in knowing that he still had feelings for me. His actions and words had caused me so much pain, there was nothing that could right that wrong. I never spoke to him again.
Example 2:
After Joe, I faced my illness alone. I had friends and family, of course, but lacking that one special person with whom I could curl up to and tell my inner most thoughts. I never lost the desire to have this person and went on some pretty desperate and pathetic dates hoping for “the one”.
I dreamt of the man that would hold my hand as I cried and said I didn’t know how I could do this anymore. I longed for the one that would help me when I was sick and love me for who I was. I daydreamed about looking into his eyes as I drifted off to sleep before the transplant and awoke to find him by my bed afterwards.
What I learned was, an oxygen tank can put a damper on dating. I never met anyone who could handle where I was in my life. I doubt that I was really in any place to start a relationship anyway. All I knew was that I was lonely and wanted the comfort of a lover’s arms.
I went into surgery without staring into anyone’s eyes and awoke to find only my wonderful family and friends. Along the way, I found out that I could give myself most of the things I was craving from a man. I learned to comfort myself. I began to understand what it meant to love yourself and “be whole” without a partner. I never stopped wanting to find true love, but I did discover a self-love that allowed me to feel much less alone. I began thinking of myself as “my own best friend”. I know now that my loneliness served a great purpose and has made me capable of being a full person in a relationship.
Example 3:
When I was diagnosed with chronic rejection, I had been dating David for a few months. Neither of us really knew what that meant so we blindly continued on. We had been together about a year when we reached that place many couples do: move forward or brake up. Perhaps with my bulldozer-like charm at the core, we chose to move forward and move in. I packed my things and we found a cute apartment in his town. To complicate things, the day we moved in, an oxygen tank was delivered and I became dependant on tanks and tubes 24 hours a day.
Over the next year, my health continued to fail and our relationship crumbled from this inside out. Had circumstances been different, it’s doubtful we would have stayed together. We so rarely saw eye to eye and had a hard time talking through our differences. To his credit, David never left. He never ran from his terminally ill girlfriend, no matter how poorly we were getting along. As for me, I felt trapped in my unhappy relationship, tied down by my own illness. Where could I go in that state? It was either stay with David or move in with my parents. At 30, moving back to my parent’s home would have been equally difficult.
To deal with the situation, we resorted to staunch pragmatism. We made deals about everything. He had a schedule of when he could do the things that drove me crazy and I had my schedule for things that drove him crazy. We had a list of topics that were off limits. We designed ways to fight that would honor my physical limitations. Our coping mechanisms were quite intricate.
I don’t mean to say that there was no love there. I respected David for his ability to stand steady in the storm. He admired my courage in the face of death. We loved each other but we weren’t meant to be together. Had I been healthy, our relationship would never had lasted so long.
In the end, he was with me through the transplant and the following six months. Because of his willingness to stick around, I felt I owed it to him to see if we could make it work. I imagine he felt that he had invested so much he wanted to see if things could turn around now that I was well.
Eventually, I moved back to my original town and he stayed behind. I will always be grateful for all that David did for me. I will also always remember what it felt like to be sick in an unhappy relationship. Just because they stay with you doesn’t mean that it’s “the one”. With my health, I don’t have the luxury of dating people who aren’t a perfect match. Someday, I’ll get sick again and I want the one by my side to lift me up, not tie me down.
Example 4:
In my early twenties, I had followed some self-help advice and written a list of the qualities I wanted in a mate. Over the years, I revised and rewrote this list. After David, I threw my list away. I decided my dream man was merely that, a dream. I broke down my childish fantasies and let go of my secret fairytale wishes. It was time to face reality: nobody would ever meet my specifications.
When I met Jason, it was just another date. We had met online and he had interesting things to say but, then again, so did the last few guys I met. The crazy guy, the married guy and the weird guy all sounded good in cyberspace. I was becoming numb to the whole process and when I entered the wine bar where we would meet, I expected nothing.
The conversation flowed easily and we quickly bypassed the small talk. It seemed as though our perspectives meshed on every topic and I was amazed at his ability to articulate his ideas. By the end of the night, I felt as though I had known him for years. I was giddy with wine and good conversation but patiently waited for the skeletons to come climbing out of his closet.
On our next date, a few days later, he told me about all the research he had done on CF and transplant. He knew more than I did about some things! While normally I would wait to talk about all the unhappy truths of my health and early death, he asked me questions that proved he really wanted to know the deal. It wasn’t long before we had gone into deep and uncomfortable waters, exploring how we would handle saying goodbye. I was very impressed with his bravery and openness.
Jason restored my faith in fairytales. Every cliché that has been written about true love applies to us. We knew right away that we had found something special. We wasted no time entwining our lives. He is in no way in denial about my situation, but it inspires us to love harder every day. We know we don’t have a lifetime, but what we have is worth it. He is “the one”.
The Verdict:
As a person living with illness, the road to love was often confusing and discouraging. I have the battle scars from years and years of bad choices and faulty perspectives. Now, after consciously working to change my patterns, I have found what I always hoped, but never truly believed, was possible. I have the happiest and healthiest relationship that any human being could hope for, with or without CF. All I can do now is talk honestly about all the things I wish someone had told me when I was searching for answers to the tough questions. I hope that some of my big mistakes will serve as a warning to others as well as an inspiration to require more from themselves and those they choose as partners.
Below I have jotted down a few things I Wish I Knew A Long Time Ago. They seem simple, but they really are key.
Pre-Dating “Homework”: It is essential before you begin dating that you clearly establish a strong foundation of self-love and appreciation. Sadly, it is easy for some girls (and boys) to see themselves as “damaged goods” and therefore be willing to do things in relationships or overlook major character flaws that they wouldn’t if they didn’t have an illness. The first step in doing this is to uncover the difference between your mind, your body and your soul. We so often find our self-esteem in the clothes we wear or how pretty we feel, but it’s important to go deeper to discover what is valuable about you beyond the physical. Once you are able to make that differentiation, you can then explore who you are and what you believe about life on a much greater level. When you can truly see yourself as the amazing person you are, you will then be able to begin the search for a healthy relationship.
Dating: There are so many questions that come up when you first start dating a new person. Things like, “When should I tell him about my illness?” and “What kind of reaction will he have?” can distract you from getting to know someone. The answers to these questions need to be explored in your “homework” so you can enter into dating with a plan. You have to figure out where you stand on these important issues before you go on the date. Trying to sort out when you should tell someone about your physical problems in the back of your mind won’t work; you won’t be engaged in the moment and will miss getting to know the person in front of you. If you think of these things ahead of time, you will have a game plan and can feel more confident.
In general, when you are on a date, it is essential that you find techniques that help you maintain your level head and not get caught up in the “need to impress”. Pretend like it’s a job interview and you are the employer! There’s only one position available as your partner, so be discriminating and choose wisely!
Getting Serious: When you have an illness, falling in love can feel bitter sweet. Amidst the excitement and joy come the questions: “How will we handle it when I get sick?”, “Will he stay with me when I am in need?” and “Can I or should I have children?”. Facing the sad parts of your reality head on is key to having a strong relationship. If you can’t talk about the hard things, there will be trouble down the road. As the person with the illness, it is your responsibility to educate and initiate dialogue about your disease process. It is your partner’s responsibility to take it seriously and look within themselves to see if they are up for the challenges ahead. If your relationship is going to work, you will both need to feel safe and comfortable in talking about your true feelings at every turn. While facing illness is difficult, it can enhance a relationship with the right partner because you both will be keenly aware of how precious your time together is.
The burning question for many people is; “Can I have the relationship of my dreams despite my illness?” and my answer is “yes”. There is someone out there who will love you enough that a short time together is better than no time at all. Is your life more complicated because of your illness? Yes, but you have the opportunity to embrace your challenges and enrich your life and your love.
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