I’m twenty years old, so like most people in their early twenties I like to meet new people, go on dates, and potentially find someone I would like to have a real relationship with. As everyone knows, the first couple of dates with someone new is a lot of getting to know each other. Asking about their hobbies, interests, family, goals, friends, and other things that make them who they are. However, when you live with a chronic and fatal illness like Cystic Fibrosis, a lot of those topics are influenced by living with the illness. Most people don’t just assume you’re sick and ask questions about it.
Then it becomes a struggle of: “when do I tell this person I am sick?” “how do I tell them?” “what do I say?” “how can I make sure they know how serious it is without scaring them off?”
I have recently started dating a guy who I met through my older brother. He knows I have CF, but I’m not sure of what details he truly knows about the disease. He knows the basics of my lungs suck, keep me away from any kind of smoke, I have to eat a lot, and I do breathing treatments. Things get more difficult when I want to share this aspect of my life with him, but don’t know how to do so in a way that doesn’t come off as being a forced conversation or scaring him off.
I’ve had relationships end badly in the past because they couldn’t handle the idea of dating “the sick girl.” They put a timestamp on our relationship assuming I won’t live long enough to have children and grow old together. It hurts. Putting yourself out there is difficult for everyone, but especially when you come with the amount of baggage CF can be.
Doctors and specialists prepare you for the downfall of CF on the medical side of it. They’ll prepare you for what to expect as the disease progresses, you become immune to antibiotics, a lung transplant is needed, exc. However, no one prepares you for the social aspect of it. Trying to live a normal life with this debilitating illness weighing overhead. No one tells you the best way to break the news to new friends or loved ones- how to properly give them the information without them thinking you’re a death wish.
Of corse everyone is different and will react to news differently- so there is never one right way of telling someone about CF. Here’s to hoping people we meet or date will see us as more than our Cystic Fibrosis.
What You Need to Know When Loving Someone With a Chronic Illness
I am completely and utterly in love.
The man who holds my heart is kind and generous, loving and honest, strong and brave. He is the best part of my morning, as I wake up to his innocent slumber, and the most secure part of my night, as I fall safely asleep in his embrace.
He believes in me. He pushes me. He catches me when I fall.
He is, by far, the greatest person to have ever come into my life.
The man who holds my heart has a chronic illness.
He was born with Cystic Fibrosis, a disease that, due to a an excess of salt production, compromises the digestive system, reproductive abilities, immune system, and lungs.
When we first met, I was not aware of what Cystic Fibrosis was, nor was I aware of its severity. When he told me of his disease, I assumed that it was not pleasant, but I never thought it would be something I couldn’t deal with as his girlfriend.
The beginning of our relationship, he was extremely healthy. There was no reason to believe that Cystic Fibrosis was a true threat to his health. I would sit with him while he did his breathing treatments, which consist of wearing a vest that shakes your lungs and mucus inside of them around, and breathing into a nebulizer for 30 minutes, two times a day. I would make sure I always had extra enzymes in my purse or car, just in case we went out to eat and he forgot them. I would watch him, and all of his strength, everyday and feel secure that Cystic Fibrosis would not take him from me.
Now, his health is wavering. His lungs have progressively gotten worse, and he has developed a new infection that can only be treated through an IV, which means he potentially has to leave our home, our bed, our security, to spend 3 weeks in the hospital. His cough takes over his day, making it hard for anyone, including himself, to get two words in without having to pause to allow him to cough in pain and embarrassment. His stomach hurts more and more, and so often he cannot eat because the pain is just too intense. His exhaustion causes him to spend more time sleeping than with me or his family.
I am by his side every step of the way, just as I was before, but now things are different. Now, Cystic Fibrosis is winning.
I feel powerless. There is nothing that I can do to alleviate his pain, and trust me, if I could, I would in a heartbeat. I cannot do anything for him except hold his hand and mutter ‘I love you’, offer him a warm embrace when he needs.
At least, that’s what I thought. Tears have been shed over what may happen to my boyfriend one day. Tears have been shed as I watch him embrace this unfair pain. Tears have been shed over the children we may not have, because CF is a blockade in that journey. Tears have been shed over my fear, over my stress. Cystic Fibrosis is an ugly monster that I wish I had the power to defeat for him and every other person who suffers. But, I don’t. And neither does he. And, I have learned, that the only real thing that I can do for him, the only real help I can give, is to just hope.
That’s all you really can do when you love someone with a chronic illness. You can be there to hold their hand, give them a shoulder to cry on, offer the brave face when they cannot. You can love them with every ounce of your being, you can cherish them for the amazing human that they are, but at the end of the day, the greatest gift you can give them is hope.
Hope that their pain will pass. Hope that years will pass and they will still be at your side. Hope that the future you dream of spending with them is in fact obtainable.
"Whoa, What Are Those For?" CF Medications In Public
If you know anything about Cystic Fibrosis, you probably are aware of the insane amount of pills and other therapies that we require in our everyday life. While there are a lot of medications, patients with CF, like me, still have to go on with our lives like a normal person. This includes having to do our medications in public. When I have to take my Cystic Fibrosis medication in public, I am usually pretty discreet about it. Although, sometimes it’s hard to keep them from being seen. When I was in elementary school at lunch, I was asked many times about my enzymes. Being that young, I only understood that I needed them to digest my food. So, that’s what I told my classmates. Nowadays, people are aware I have something going on due to my constant supplemental oxygen. When I go to eat and pull out my 6 horse-sized enzyme pills, I get a “Whoa, what are those for?” or a “What are those for? They are HUGE. I can hardly take one small pill!” I use this time to create awareness for Cystic Fibrosis and explain that while CF affects my lungs, it also affects my digestive system causing a problem absorbing nutrients and breaking down food.
Another medication that is hard to hide is my breathing nebulizer machine. Sometimes I have to do it in public. When I was younger I was embarrassed, due to all the stares I received. Now, I do it with confidence because there’s nothing to be ashamed of. Some people come up to me and ask me about it. Like the enzymes, I always tell people about Cystic Fibrosis because it’s impossible to get awareness out without talking about. Plus, if the public is not educated about it, then there likely won’t be enough funding for a cure or drug development. When I get asked about my breathing treatment, I explain that I have a genetic illness called CF that causes my lungs to fill with sticky mucus that will eventually grow bacteria and cause my lungs to scar, which is irreversible. This can lead to needing a double lung transplant when the lungs are too scarred up and the lung function drops too low. So, in order to get this junk out of my lungs and to breathe easy, I need nebulized breathing treatments.
I am never embarrassed when people ask me questions in public about my medication. I find it as a way to open up someone’s eyes and heart to the struggles of a person with Cystic Fibrosis. I always hope that after speaking to the public, I spark an interest in them to go research it and hopefully get involved with their Cystic Fibrosis community to find a cure. Hopefully one day we will have a cure. That’s a world I dream about :)
Right, I’d like to meet some people with Cystic Fibrosis. I’ve felt quite alone on this subject and don’t know who to talk too. So if you have it or know someone who does, Id like to talk and see how you feel. Because it sucks. ALOT!
Snacks make the world go ‘round, and coincidentally they also help your body get the most out of your workouts. Try adding these foods to your routine when you’re hitting the gym.
Pre-workout: It’s important to get some carb-heavy snacks in before a workout. That way, you have the reserves on hand to get the most out of your exercises.
During workout: #1 is to stay hydrated! If you’re a CFer, you know that your salt intake might need to be higher on days you work out. When your workout is a little bit longer, have a protein bar handy for extra energy—just in case.
Post-workout: Your body is in recovery mode, so feed your hunger with high protein foods like yogurt or hummus, as well as nutrient-rich snacks like walnuts or a fruit smoothie.
Don’t hit the gym before talking to your doctor about strenuous exercise. It’s key to stick to what works for your body!
You stand by them through dark days and celebrate with them in their victories. You give them strength when they need it most, and you fight for them when they don’t have the energy. A sibling bond can never be fully described nor can it be broken.
So… What’s up with all the people role-playing people with cystic fibrosis lately? Like, do you really find it entertaining to pretend to have a chronic, life-shortening disease? Because I can tell you from personal experience, it really isn’t as fun or exciting as you seem to think it is.