May is national Cystic Fibrosis Awareness Month. Cystic fibrosis is a currently un-curable, life threatening, genetic disease that affects more than 30,000 people in the United States and 70,000 worldwide, according to the Cystic Fibrosis Foundation. What is it like to live with Cystic Fibrosis? A local woman who’s been living with CF disease for thirty-seven years shares her story. She has asked to remain anonymous for fear of jeopardizing her career and livelihood.
I started off my career as a social worker, until I realized I could not afford to be one. The fact of the matter is, having a chronic and/or terminal illness costs money. More money than you can possibly imagine if you don’t have such an illness.
Before your mind starts wandering, let me preface by saying that I did not bring this illness upon myself. It was not caused by smoking cigarettes, unhealthy eating habits, risky teenage choices, lack of consistent exercise or poor upbringing. Simply put, my illness was caused by my parents deciding to have a baby.
About five years ago, I was working as a social worker. The demands of the job were increasing as the health insurance coverage was rapidly decreasing. Social work wasn’t supporting me, and I needed another career to survive. I had been trying to get my foot in the door for another industry for at least a year when, finally, an opportunity popped up with a large company. I took it without hesitation.
It was a bittersweet transition leaving social work, as this job filled me with a sense of purpose. I found meaning in giving back to a needy community. But then, on a hot summer day during insurance transition time between new and old medical coverage from jobs, I walked into my pharmacy to purchase a specialty medicine (that basically keeps me alive) and the pharmacy technician casually told me that my existing insurance would not kick in until I met my $2,000 deductible. When the tech told me this, my heart dropped, my face burned, and I felt like I was going to melt right there in the Rite Aid line. I mean, please, I was a social worker! I didn’t even have $2,000 in a savings account! I just left the pharmacy in a daze without the medication and called my mother in a panic. I knew right then and there, despite the sense of pride and purpose my social work job gave me, that I had made the right choice to go to corporate America. I could no longer afford my life or my health. I could no longer afford my disease.
I’m happy to say that my life is more affordable now, but I won’t say it comes without challenges. For starters, I still have significant medical debt. I don’t know if I will ever be a wise financial decision for me to purchase a home. The level of anxiety that I experience about my symptoms, my future and the impact my illness has on my relationships is often debilitating. Some days I cough up things that I can’t believe exist inside of me, and I think about that little green mucus plug all day. After all these years, it still grosses me out!
I know ruminating on a mucus plug is not particularly helpful or healthy, but that’s what happens sometimes when I allow my mind to go there. However, a 40mg dose of Celexa keeps a lot of anxiety at bay. It’s honestly the only way, for me. I have tried to get off Celexa many times, as I have felt frustration about my reliance on it and its potential long-term effects, but I always go back. The anxiety and panic is just too much to bear in order to sustain everyday function.
Celexa and a consistent dose of denial is how I make it. Unlike many CF patients, I’m not an active member of the CF community by choice. Some may call this denial, but I call it healthy self-preservation. I don’t look at CF blogs or read personal struggle stories. I don’t interact in-person or online with many other CF patients, and I don’t compare my lung function numbers to other patients. I don’t follow CF research in hopeful anticipation that a cure will come about after 37 years of people optimistically telling me there is a cure “right around the corner.” I don’t want to live my life and entertain false hope that a cure will allow me to one day begin my life again. I don’t want to focus on my illness as a major part of my identity. I don’t want get involved in the community and then get unbearably depressed for those that don’t make it. Instead, I do the absolute best I can to live my life with the cards I’ve been dealt. I stay within my own special CF parameters while striving to be as healthy as possible. I focus on my relationships, family, friends, life experiences and things I find pleasurable and beautiful. Things like food, art, animals, travel and film.
This kind of focus is not always easy, and creates a tremendous amount of anxiety at times:
“Am I going to bed early enough?”
“Should I eat this as it may cause inflammation?”
“Should I go to my friends’ birthday party, since her daughter is sick with a cold?”
“Should I get on an airplane while I’m already feeling a little sickly?”
“Should I really have this second glass of wine? Shit, should I even be having wine?”
“Should I stay up late with my man and enjoy this special moment, or ensure that I stick to a bedtime so I don’t feel exhausted in the morning?”
“Should I sacrifice a habitual doctor’s appointment for an important work commitment that may look bad if I don’t attend?”
“Should I spend my time and energy on this friend if we aren’t even that close because I feel exhausted today and want to stay home and nap?”
These are things constantly going through my mind, and all these questions exhaust me. The reality is that at the end of the day, I have to be selfish. It doesn’t always play well if others don’t truly understand how this illness can take over your life if you’re not careful. The thing is, if I get sick with a lung infection, I have to get intense IV antibiotics for three weeks on a schedule of every eight hours, which is a logistical nightmare. It’s exhausting, I have constant GI problems on these meds, frequent blood draws, nurse visits, medical appointments, and constant explaining of things to management at work to get accommodations that they don’t understand or maybe don’t even believe. But more than that, getting sick may mean permanent, irreversible lung tissue damage. Because of this fact, I have to make hard choices every day and work within the limits of my physical body so I can have a decent quality of life for as long as possible. Sometimes, just understanding those limits is extraordinarily challenging. I’m still trying to figure them out every day while the clock just keeps ticking.
Don’t get me wrong, there have been many medicines to come on the market that have increased my lifespan. I am truly grateful that these medicines that are available to me. They may never cure CF, but if there are new medications on the market that improve my quality of life, I am ecstatic to have them. Please give me all of them, I will shove them all down my throat and never look back! When you have a chronic illness, any relief from symptoms – large or small – provided there are no negative long term effects, are met with a great deal of appreciation.
Bottom line is it’s not fair, it’s not easy, but you do your best and simply hope that if people can better understand one another, there may be more fairness one day.
This May, volunteers across the country will come together to raise awareness and understanding of Cystic Fibrosis. How can you help? For a full list of fundraisers and special events in North Carolina, click here.