CF always felt isolating to me. Growing up I felt like I was the only one in the world who had it. I never met another child or adult living with CF, and my mother never really cared enough to make it a big part of our lives. I was severely uneducated about my own disease and what it would do to me when I grew up. I had no resources or people to reach out to to talk about it with, not that I ever felt like I needed to until later in life. My school years were spent hiding my illness to avoid criticism and teasing that no person should ever go through for any reason, let alone being sick. I was very much alone in my battle for many years.
Flash forward to when I was about 19 or 20 years old. I was still relatively healthy, married, living on our own when I found out how quickly CF can turn a life around. I caught the flu. It started as any flu does and I was prepared to sit on my couch for a few days and Nyquil this flu into the ground. As time went on I got sicker and sicker until one morning I couldn’t breathe at all. My mom rushed me into the ER, where my lips had turned blue and my oxygen was extremely low. Over the course of 4 days I wouldn’t sleep and I’d be transferred from my hospital room down to the ICU to be put on a bi-pap mask and monitored very carefully. I finally slept for what seemed like ages, only waking up to hear my doctor talking about how this was a serious situation and only time will tell if I pull through. This was the first time I realized that my illness was as serious as it is.
By some miracle I did it. I pulled through, and a week and a half later I was moved back up to a regular room. It was then that my nurse had asked me if I knew a patient down the hall. She thought I might since she also had CF and she knows the CF community is pretty tight-knit. This was brand new news to me! After she left my room I immediately looked into it, I had never realized how many people or resources there were out there for me to connect with. I found a group on Tumblr and eventually connected with another, larger group on my Facebook. I scrolled through and found posts from all sorts of people who were diagnosed with CF, mothers of CF children, friends and spouses of people with CF, the list goes on and on. I sat in my bed trying to think of what to say in this group to let people know I was there. I’m sure it was something dorky (I’ve blocked it from my memory so it must’ve been bad!), but it worked. I began to talk to a few people that I now consider some of my best friends.
Through the years I’ve joined other groups and found peace in being able to gain support and understanding from people who know what I’m feeling and going through. People who share my dreams and goals of being able to travel, have families, and make a better life for ourselves that doesn’t involve constant sickness and oxygen tubing; and while people with CF aren’t really supposed to hang out with each other, meeting some of them face-to-face was one of the best feelings I’ve ever had. The bonds and friendships built in this online community are stronger than most of my other relationships. Beginning the transplant process, I was especially grateful for the people I’ve connected with who are either waiting for transplant or who have gone through it. The insight and advice I get from them are gold. The successes of other transplantees and the amazing, wonderful, fulfilling lives they lead post-transplant give me hope.
Of course there is a side to this community that makes it hard to be a part of sometimes. There are people you will love and care about who will pass away, people who you’ve become so close to that die from the same thing that’s slowly trying to kill you. It’s a hard wall to face, but it’s a part of this disease. I never understood this aspect before joining these groups. I never really understood the severity. I’ll always remember the ones who have passed, it was hard to lose them, but I’ll never regret meeting and knowing them or being privileged enough to be a part of their life.
Fighting this disease will never be easy. It won’t stop ’til we find a cure. It’ll go round after round kicking our asses. Every time we stumble into our corner, we know we have to get back in the ring and continue fighting no matter how exhausted or beaten up we are. Sometimes the only thing that keeps us going is the crowds of people in our corner pepping us up and chanting our names. I am forever grateful that my corner has spread through the world. My marriage ended, relationships and friendships diminished, my sickness kept trying to take and take. Through it, community was always there and I can say for certain that it will always be there. Offering me love and advice and rooting for me every step of the way.
Rachel Whidden is a CF blogger finding her way through the journey of her 20s and transplant. You can find her writings on her blog, Living Fast, Dying Young: My CF Life, and follow her journey on her Facebook page, Rachel Whidden: Living Breathless in the Windy City.
