I’m going to preface this article by saying I’m probably not the best person in the world to give anyone relationship advice. However, I do feel like a lot of other people out there — whether you have CF or not — will relate to my experience. I want to share what it is like dating as a woman in her 20s who also happens to have a chronic illness.
For starters, every relationship I’ve ever been in has lasted from about three months to a year and a half. Not quite sure why those are my magic numbers. I imagine — to some people — that could be deemed a red flag. My experience is that by the time things start to get a little “too serious,” the relationship kind of implodes on itself. Three months is about the time we expect someone to put a little added effort into being more than just someone you go on dates with from time to time. And a year is about when things start looking like potential long-term commitment. I — for one — am not scared of commitment when it comes to someone I really like and want to pursue a relationship with. However, when a life-threatening illness like cystic fibrosis comes along with me, I imagine it may seem daunting to commit to having a partner with a revolving door of doctors, medical complications, and trauma in tow.
For anyone out there who doesn’t know, dating in the 21st century is probably the best method of self-torture you can put yourself through. There are dozens of apps and websites that make it seem like there are endless opportunities to find the perfect person. If one person isn’t quite attractive enough, just swipe and you’ll see another. Having an invisible illness like CF, this poses all kinds of added challenges. Sometimes I wish I could write “I HAVE A DISABILITY” across my forehead.
Additionally, so many of us try so hard to make strangers on the internet think we’ve got it all. We flood our social media pages with high-quality pictures — posing perfectly and smiling big in every post. We all so badly want the rest of the world to think we have our ducks in a perfect row, even if that scenario couldn’t be further from the truth. Truly no one would ever look at my Instagram and, upfront, know that I have battled cystic fibrosis my entire life and will continue to do so until the day I die. No one knows that I struggle with deep emotional turmoil from it, or that I have lost so many friends the same age as me from the very disease I am living with.
Let me give you a little background on my life. I’m in my early 20s and one of the fortunate ones who became very established in my career early on. I figured out what I wanted to do by the time I was 19 years old — I got my cosmetology license, built up a clientele really fast, and have been living independently ever since. I am a self-employed independent contractor, which means I am flexible but it takes a ton of discipline and work ethic to be successful. Thankfully, I’ve had a lot of great mentors in my life who taught me the power of working hard at a young age.
In an odd way, I feel that the ambitious side of myself has mostly come from having CF. This illness has been both the bane of my existence and the entire driving factor to do all the things in life I ever dreamed of. Having a roughly 40% baseline lung function makes me feel like I never know how much time I am actually going to have on this earth. So I’m going to do everything and anything I can to make the most out of my life here.
When I was 19 years old, my life was teetering on death. I was inches from being put on the transplant list and although I was pushing through — going to school every day and working on the side — I was suffering so deeply inside. I still struggle with envy for others my age who will never know the constant panic of going somewhere new and being met with an unavoidable flight of stairs; the embarrassment of needing to use my handicap parking pass; or being on a first date and having a coughing fit in front of them — even worse in public. I don’t think I’ve found any worse feeling than waking up with big plans for the day and having to cancel them because my body is aching, only to be met with an unsupportive boyfriend who thinks I’m being selfish or lazy.
Thankfully, since being put on Trikafta® in August of 2019, it’s been almost five years this summer since I’ve needed to be hospitalized. Prior to that, in a peculiar way, it was easier to explain the toll CF takes on me. I’m not saying that anyone thinks I’m lying about the chronic pain I live with every day or the mental struggle that comes along with it. However, it was probably more believable when I was in and out of the hospital every other month, using supplemental oxygen, and constantly accessing my IV chest port. I have a decent amount of medical PTSD from everything I’ve been through with CF, and I struggle with anxiety and feeling the need to be in control of most situations. But can you really blame me when my whole life has been at the mercy of doctors and hospital stays?
Along anxiety, I often get overwhelmed when I can feel the effects of CF on my body. The best way to explain it is that every bone, muscle, and joint feels heavy and my lungs are on fire inside of me. So imagine feeling like that on the inside while having strangers stare at me as I get out of my car with my handicapped tag, and shooting me dirty looks while I’m coughing. In those moments, I tend to get snappy at the people closest to me, but I try my hardest to recognize it — really all I need is compassion, reassurance, and patience. All of that being said, if you’re going to say you love me, you should love all of me. CF — the demon that it can be — comes along with that.
Finding someone who has patience and understanding for the unpredictability of cystic fibrosis is so incredibly important.
Sometimes plans need to be rescheduled, and that's OK. It may seem like laziness or disinterest in your partner’s plans, but when you have a chronic illness, there are — undoubtedly — going to be days where you just need to take the day a little easier. Do not let anyone make you feel like you only deserve their love on the days when you have 100% energy.
Empathy is — without a doubt — one of the most important qualities in a relationship, especially when you have a chronic life-threatening illness. Having a partner who — although they may have never experienced anything close to the adversities of living with CF — can take a moment to understand your emotions and accept those parts of you is key. CF is not your defining factor, nor will it scare away anyone who is truly meant to be in your life for the long haul.
Your partner should be an advocate for you. They should spread awareness, be open minded to learning about the complex nature of CF, support your needs and — if needed — be an added voice for you.
My last piece of advice is probably as candid and transparent as I can be, albeit a little TMI. Cystic fibrosis is far from a “sexy” illness. Anyone who knows anything about CF cannot deny that it can be pretty gross at times. It includes lungs filled with thick green mucus, pretty much every digestive issue under the sun, and never-ending sinus infections. It’s recovering from surgeries, undergoing traumatic procedures, and needing the constant security of living near a CF care center. Sometimes CF is keeping everyone in the whole house awake at night because you are hacking your lungs out. And all that relentless coughing can sometimes lead to literally peeing your pants or running to the nearest bathroom to vomit. I can only imagine how off-putting these scenarios are to a boy who just met me and thought I looked pretty. Let’s also just say the awkwardness of talking about bowel movements with your doctor in front of your partner never gets old.
However, I am not ashamed, nor should anyone be. CF isn’t going anywhere, and I certainly can't hide it. Whoever ends up with me is going to see all the struggles sooner or later. Find yourself a partner that can make light of it and laugh about all the awkward and gross things that come with cystic fibrosis.
If you are someone out there who has a supportive partner or spouse, be sure to hold them tight. It’s a beautiful thing to come across someone who loves you unconditionally despite the circumstances. While I don’t think there’s a shortage of selfless, devoted people in the world, I do think they are hard to come by. CF or not, we are all human and come with our own set of flaws. Everyone is worthy of being loved, and I think we can all agree that all relationships require us to make sacrifices and put our pride aside from time to time. It’s absolutely necessary to make accommodations to allow our partner to flourish and feel supported in every way. My hope to anyone out there who can relate to this blog post is that you find someone who loves and supports you in ALL the ways you dream of. In the meantime, I hope you find the space to love yourself first.
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