Just to be clear: when you live with a chronic illness or choose to be with someone who has a chronic illness, it is not always as easy as a relationship that does not experience the same challenges. I have Cystic Fibrosis the dictionary definition is much more medical and technical than gives justice to the reality of my everyday life. To give the basics, Cystic Fibrosis is a genetic lung disorder, in which the protein on two of my genes has been mutated, causing many problems that are ultimately life-threatening if not treated.
There are many different genotypes in relation to Cystic Fibrosis, but all of those affected always have the Delta F508 gene. This gene codes for having the actual disease, and the second genotype determines the severity of the disease and to what extent it affects other organs of the body, as well as the lungs. Currently, the average life expectancy in the United States of someone with Cystic Fibrosis is 37 years old. Naturally, that is an intimidating average age to think about the fact that after that, you have outlived many members of this population.
The physical and emotional manifestations of the disease present a much different "definition of the disease. To me, it means endless pills every day, therapies and nebulizers multiple times a day, hospitalizations at least once or twice a year, and a constant feeling of you not being able to breathe as well as you should. In turn, having this disease means sometimes making sacrifices for the prolonging of your life and for the benefit of feeling better. It means having days where you feel bad and are wheezing but have a list longer than you of things to do, so you push through it because you know that you either get up and take on the day or you don't.
Having a chronic illness means having to grow up in ways other people will never have to and seeing and experiencing things that you wouldn't want anyone else to. Ultimately, this disease has made me who I am today and I don't regret the way I turned out, despite the challenges. I am a glass half full person and that means taking in every moment for the joy it brings and looking to the future instead of dwelling in the present, and that is something that has defined me.
This week, I sit down with my oh-so-amazing boyfriend and to really see how he copes with my situation, what is good and the bad, and finally, the truth of what he deals with every day, along with me.
1. What is your favorite physical feature about me, (besides the obvious)?
"I like your hair; the texture and color have always been unique to me. It is naturally curly and I know you hate that so it makes me appreciate it even more because it makes you, you."
2. Favorite 3 non-physical feature, characteristic, or quirk?
"Your bubbly personality and the fact that you generally see the good in everything no matter what the situation or who it is. You are a pretty optimistic person and that makes things at least a little better when I feel bad. Favorite quirk, hands down your laugh that only happens when you are laughing really hard or are super into something. It sounds like a goose freaking out and you are so out of breath that you cant breathe. The second quirk is when you make a puppy dog face and voice that are reserved for when you want attention or more love."
3. What is your reaction as you keep learning new things and aspects about what it means to have CF?
"It depends on what I am learning. Based on the knowledge I have, I will either take a greater pessimistic view or a greater optimistic view depending on the situation. For instance, this most recent hospitalization, when you grew new bacteria, you had to explain to me that there is a difference in slow growing and fast growing, and often times, treating one aspect could cause another to become worse. I am a perfectionist and I like to think that you could treat everything at once in the most logical way, and with CF, that isn't always the case, which is frustrating and worrisome because it's like playing whack-a-mole constantly."
4. How do you feel that me being in the hospital for extended periods of time, affects our relationship?
"It's a strain, and it's hard for you to not be here. At the beginning, it feels like you are going to be there forever, and your life is on pause while the rest of the world continues. The quality of the time is affected and there are limitations to our time together; people are constantly coming in and out, you can't leave your room and it can cause abrasions and tension. It can spawn fights over how to continue and I just want to make you better. The fact that I can't do that is more evident when you are in the hospital". Overall, I don't think it is a huge detriment to our relationship because we keep in contact every day and talk as much as we can and then just go back to being normal after you get out."
**Our relationship began with me being in and out of the hospital as well as having a central line accessed constantly**
5. You are always reminding me to take my pills or to do things that I have to do in order to maintain my health and feel good. Is that something that bothers you or that you see as a positive thing?
"It bothers when I see you not automatically doing these things because I want to see you be as independent of me as possible; to be able to do your own thing and to be able to live your own life. It can be worrisome because If we were to go out of contact, I know you would start to slack or wear yourself down. Doing it automatically is important and should be second nature."
6. How does knowing that I have CF and that it is a chronic illness, affect your hopes for the future?
"It depends on what is going on. If you are healthy then I don't worry that much. But if you are really worn down and sick, and you are in the hospital it scares me. At the same time, as I see the other CFers your age, I realize you are healthier than most of them and that gives me hope that you could prolong a transplant and live a relatively normal life. I can see a future that goes either way: one where you get terribly sick and die at 30, and one where you have a successful transplant, bounce back and live into your late 60s, early 70s. At the moment, I see the more optimistic future because you are ahead of the game and can make the foundations you have laid now, last and give you a good chance."
7. How does your family feel about all of it?
"When I first told my family about the fact that you have CF, they didn’t really react one way or the other. My sister, Olivia, has been the only one that has ever raised concern about the future. I have always been most interested in my brother’s, Michael, opinion. He is a bit of an elitist and often looks down on those that are ill. The important distinction I have found with Michael, however, is that he only looks down on those that have caused their illness, often through poor life choices/habits. Michael has never said a word to me about how you are bad for me or anyone else because of CF. Overall, my family has been really accepting of the disease."
8. What is your favorite thing to do with me and what is one activity that you believe is affected by Cystic Fibrosis?
"My favorite thing to do with you is actually multiple things. Anything outdoor related, like hiking, kayaking, and just exploring nature are things I really enjoy doing with you because I feel like they bring us closer as a couple and form lasting memories. Unfortunately, CF sometimes makes it hard for you to keep up and makes certain things dangerous for you to do. For instance, I’ve always wanted to climb a really high mountain but I know this would be challenging for you due to the lack of oxygen. I’m also an extremely active person in general, but I know my activity level would leave you exhausted and quite literally gasping for air. For instance, I like to lift weights and run, but I know that these activities are more physically challenging for you than most. However, despite all of this I still believe we can find a happy medium that allows me to continue my active lifestyle while keeping you safe and comfortable."
9. Does knowing I have Cystic Fibrosis change your outlook on me and if so, how?
"My outlook of you has evolved as I’ve gotten to know you. In the beginning, when I didn’t know hardly anything about CF, I didn’t think very much of it. I was told it was a progressive, chronic illness with no cure so I knew it was serious but I didn’t really understand the implications of the disease at all. As I learned more and more about the disease, I starting to feel extremely sorry for you. I felt like you were cheated. I didn’t understand how one mutation, one simple gene, could cause so many problems. I wanted to help you but I didn’t know how. Now that I have a better grasp of the disease, I understand what you have to do to keep yourself healthy and functional. More importantly, I know how you can improve. Now, CF is just a part of who you are, but it doesn’t define who you are to me. You are Ashley first, not just a walking CF banner. The disease is a part of your everyday life, and subsequently, is a part of mine. However, it is not the focal point of our lives, it’s just something we have to deal with. I see Ashley first, and I always will."
10. Is there anything else you want to tell me or say?
"I guess I want to tell you that this disease affects me just as much as it affects you. The hospital visits, therapy twice a day, you feeling ill, all the pills you have to take, they all serve as barriers between us. I hate watching you feel sick and cough, especially when you are hospitalized for it. But despite all the negative that the disease brings, it made you how you are today. It gave me my girlfriend, the one I love. So, even with all the headaches (literally and figuratively) the disease brings the two of us, know that I wouldn’t trade you for the world. CF is a part of you, and I accept that. It’s now a part of me too".
My conclusion: living with Cystic Fibrosis is not easy; I wouldn't wish it on anyone. One of the hardest parts of the disease is that I am aware of just how much it affects other people, as well as myself. But thinking that I am alone in this is the most inaccurate thought I could have; there are so many people who care about my story and who are willing to go through hell and back with me. Knowing the answers to these questions is just the start of a journey that will be both enlightening and fulfilling at the same time, and I can not wait to see where life will take me.
