I think that this is a really sticky topic for most people who struggle with chronic illnesses. These past couple of weeks, I have been really struggling with this topic. I have been so low on energy and had such a full work schedule that it is the only thing that I can afford to spend my strength on. I’ve barely been able to muster up enough energy for even that. Even though I have been extremely fortunate to have had some truly amazing people walk into my life, it is still something that I struggle with all the time. I try not to let it get to me, but I know I’m not the only one who struggles with this. I want to start by sincerely thanking all the people that have stood by my side and proven that you are a special kind of human being, including both family and friends. Now I’m gonna break down all the types of relationships and my experiences with each of them into family, friends, CF friends, and romance.
Family
I’m gonna talk about family first because they have been the most prominent and of course been around them the longest. I have been incredibly lucky to have grown up with a very involved and loving family. I truly believe that my parents set me up for future success by taking such good care of me when I was little and teaching me the importance of every. single. medication that I take. I want to give a special shout-out to my mom because she is the most loving and supportive lady in the entire world. She is truly a superhero! Not only did she take care of me, which between my CF care and my audacious personality I was certainly a handful, but she also took care of my 3 (healthy) siblings. The most amazing things is that I can count on one hand the number of times that my mom has missed doctor appointments, even though I’m 24 years old and don’t even live at home. Any time that I am in the hospital she is always willing to come hang out with me and bring me food. I truly believe that her favorite activity in the entire world is filling me full of delicious food. Haha. It’s no wonder I’ve never had a super huge struggle with my weight!! A lot of the times chronic illnesses and other hardships can bring out the best and worst of relationships. I am glad that my family has continued to show that they are a positive support throughout treatments, hospitalizations, and hard times. I have 3 siblings, none of whom have CF, who at times had their boughts of jealousy at maybe some of the extra attention or the other special treatment, but overall have been continually there for me. They are only human too and it also affects their lives. My brother used to hate when he was a growing boy (well, he kinda still is) and I got to keep eating, but he got “cut-off”. Tehehe, we love food! They are the ones who treat me like a normal human being on a daily basis, they never babied me or expected any less of me because of my disease. I am so grateful for that. Things haven’t really changed too much as we’ve all grown up and I’ve grown sicker. My older sister acts as my mom a lot of the time now, but that’s just what she was born to do. It helps that we are once again living in the same city, of course. Every time I am sick she tranports myself and all of my medication over to her house and plays nurse until I am either better or am so sick that I need to be hospitalized. That’s the best thing about family, they know you in your worst and best times and still love you no matter what. It is the epitome of unconditional love, which is one of the best medicines for chronic illnesses.
Friends
All throughout my life I have never ever had an issue with this subject. I was a social butterfly growing up and loved to talk and goof around with everyone. When I was younger I could run around just like everyone else (for the most part) and had the energy to stay up late. I used to keep my disease to myself, except for close friends who knew about my treatments and were naturally curious. I don’t think I was really ashamed of it or anything, but I guess I just didn’t feel the need to tell people. Most of my classmates already knew about my CF from my mom coming in to classes and teaching everyone the proper techniques for coughing (into your elbow people!) or from doing penny wars to raise money for Great Strides, so I also didn’t need to talk about it. If no one asked, I didn’t talk about it. Now as an adult, I am finding more and more pertinent. I knew life was going to get harder as I got sicker, but no one tells you that friendships are going to be harder to find. Most of the time I have used up my daily allotted energy doing work and any housework that needs completing. Whereas I used to be the person that would always be up for absolutely anything, I am now the friend that habitually cancels and has to reschedule. I am not a fan of this change, but there are so many days where I just can’t fit everything in. Especially with my increase in treatments and not being able to get away with missing treatments, my social life has turned into a desert wasteland. It’s also extremely difficult to plan big social engagements when you can’t be away from home for more than 6 hours because you have to do 3 non-transportable treatments a day.. I often miss the days when I was the crazy energetic friends that was always bouncing off the walls. I think I’ve grown out of a lot of that just by growing up, but I constantly have to remind myself to have fun while living my life. I think it’s really easy to get caught up in all the treatments and forget to make sure that you are having fun while taking care of yourself. So please don’t forget to live and laugh while breathing. Transitioning into adulthood is already hard enough, but to add the struggle that a chronic illness brings is overwhelming. To my friends that are willing to come over and just watch a movie or some other low energy activity that does not require me to leave my house, you mean the world to me!
CF Friends
This is somewhat of an interesting subject. Cystic Fibrosis patients aren’t allowed to be in close contact with each other because we pass the evil bugs in our lungs to one another very easily. Therefore, we should never be in tight quarters or within an arm’s reach of each other. However, it is VERY hard to go through all the struggles of a chronic illness, especially an invisible one, alone. I know recently I have been struggling with the way I have been feeling and just want to talk with someone who understands. I was lucky enough to have been set up with a girl who had CF when I was in elementary school. Our parents had us exchange addresses and we were pen pals for several years. I am still so incredibly happy that our parents chose to do that, and HIGHLY recommend it for other CF parents. Unfortunately, CF took her life a little over a year ago. I’m glad that I could be there for her during her health decline as a person to vent to, get advice from, and just to talk to. Now that I am going through my big health decline, it is hard to not have someone with CF close to talk to. I have been trying to make friends through Facebook and I have found a couple of people that I can talk to. I was just introduced to a really cool networking site for CFers called Cystic Life. I am excited to see what kind of friendships and support comes from joining the community. CF friendships are so hard and so rewarding at the same time. You will never know the kind support of another CFer, but at the same time you share all of their hardships and never know when the friendship may come to an end. It is one of the reasons that it has taken me so long to make new CF friends. It is so cool that the internet has given us the tools to make friends despite being able to be in physical contact with one another. It is fun to get together sometimes, just as long as you are careful about not touching and protecting yourselves from passing germs!
Romance
Now, romance. Yikes. Even healthy people are scared of this subject. How do you possibly rely on another person in a world where divorce rates are higher than ever and people have seem to lost the value of the meaning of commitment?? I haven’t had the most exciting romantic history, but I am totally fine with that. My first relationship ever was in high school (what I like to believe is the normal time to have a first boyfriend). This was your normal, typical high school relationship. It began with a friendship, then this guy mentioned to my friend that he like me, she told me, and blah blah blah. We all know how those stories go! After a year or so that ended just like any other high school relationship; our interests just drifted apart. It was nothing exciting or for any particular reason at all. It was a really great first relationship that taught me a lot and I am grateful to have known someone so kind. Then a while later I started dating my first real love. This started like a normal high school relationship of hanging out, watching movies, and doing homework together. Then it just got more and more serious. This was the first time that my CF really affected a relationship of mine. There were many nights that I would get home late for my curfew because we were up talking about my Cystic Fibrosis. He didn’t know anything about CF more than the basics from just being friends with me for a few years prior to the beginning of our relationship. It was really hard to talk about the fact that we wanted to have a future full of adventure, family, and life when you don’t know if you’ll have one or if you will be healthy enough to live it the way that you want to. I’m really glad that that’s not what ultimately got in the way of our future together. If anything I think it just brought us closer together. To this day we are still friends and I look to him for support. When you have such a bond over talking about such serious matter for so many years, it’s hard to just disregard that. He is also one of the few people who has visited me just about every single time I have been hospitalized, which as many of you know is a very lonely experience. It took me a few years to find my current boyfriend. I don’t know if it’s a me thing or a having a chronic illness thing, but dating was so not for me. The three relationships that I have had began with friendship, then led to a relationship. It’s just easier that way because you don’t have to explain quite as much about your illness or “surprise” them with it. I feel like that is a big issue in dating for people with chronic illnesses. Things can be going great and then you tell them about your illness and the person is out the door. At least if you are friends first, that won’t be the reason it doesn’t work out because they know before they choose to date you what they are getting into. I even believe that being friends before dating is good for anyone, not just people with chronic illnesses. Anyways, I am so happy to be where I am. I am so grateful to have found someone that cares for me so deeply and enjoys sitting doing nothing with me when I don’t feel good, yet up for crazy adventures when my energy permits. It is so important to find a partner that is willing to support you so intimately and take on the unknowns of this disease with you. We don’t have a plan for our lives or futures. We just know that we want to take them on together. I realized a few years ago that I wasn’t going to be able to make any plans for my future because I have no idea how my health will be or what I’ll be able to handle. I’m just glad that I have found someone who is willing to stick with me through all of the unknowns.
I think that CF has also given me the most beautiful outlook on relationships. It has taught me to treat them like the precious thing that they are. So many people take good relationships for granted and let trivial things get in the way. I am a firm believer that everything happens for a reason. Bad things happen to us that make us doubt and worry, but ultimately they teach us lessons. It is what you make of those bad experiences that shape who you are because good things happen too. It is way too easy to take those good things for granted and focus on the bad. I’m so thankful that CF has taught me that relationships are a good thing, even if they seem hard. Even if at times all of the treatments, sickness, hospitalizations, and fears seem overwhelming, the people who truly care about you will always shine through. It is why I try my hardest to keep the people in my life who have always been there for me, because everyone deserves forgiveness and an open heart. It goes back to the golden rule that we were taught when we were kids: “Treat others how you want to be treated”.
