I think most people living with cystic fibrosis have thought at one point or another, “I wish people knew _____ about my life with CF.” We frequently experience uncomfortable situations, frustrating encounters, guilt, misplaced obligation, and misunderstandings. To put it simply, people just don't understand what our lives are really like; it's nearly impossible to do so unless you're actually living with CF.
Even those closest to us don't fully understand because they can't feel what we feel.
Since CF can vary so much from person to person, there are even huge differences of understanding between two people who both live with the disease. But, knowing some key things can help bridge the gap.
Here are some things that I wish people knew about my life with CF.
I wish people understood that CF doesn't just impact a person physically. CF is also a matter of mental and emotional health. Handling the physical limitations of cystic fibrosis, coping with a shorter life expectancy, and dealing with a sometimes lesser quality of life are all huge parts of living with this disease. It is so important to understand but, regrettably, treating mental health issues is only now becoming a big focus in CF care.
I wish people felt like they could ask me questions. Claire Wineland was so open about her life and her disease, and I think she helped give others the strength to open a lot of doors that they were scared to knock on. Since I was diagnosed in the second grade, I have never wanted anyone to feel like they couldn't ask me questions about CF -- it's the only way to avoid misconceptions. I always welcome genuine interest or curiosity. I'm not ashamed of having CF and your willingness to broach the subject lets me know that you see me and that you care. But if you ask, please listen.
I wish people knew how easily I get sick. Especially during the winter months, please, please, please stay away from me if you are even slightly sick. People with CF get sick really easily. It may be just a slight cough and runny nose to you, but if I catch what you have, I could be down for weeks trying to get over that “little” cold. I will never be mad if you reschedule plans because you are feeling under the weather. For people whose CF is more advanced than mine, or for people who have received a lung transplant, this risk is magnified. A little cold or virus likely means hospitalization and could even lead to death.
I wish my friends understood why I don't make plans with them. As I have gotten older, it's harder for me to drink and stay up late. In college, I was usually able to keep up with my friends when we went out drinking (I don't advise it, though). If I'm being honest, I really do enjoy a glass of wine or craft beer; but now, having more than one drink makes me feel like absolute crap. Therefore, I usually avoid social scenes because the pressure to keep up by drinking copious amounts and staying up past my 10 p.m. bedtime (yes, I am an old lady) just isn't worth my lungs getting sick and my body feeling tired and achy for days. Instead of sleeping all day, I would much rather get up at a decent time on a Saturday, go for a run, and spend the day hanging out with my husband and dogs. If you want to make time for our friendship, let's do something that isn't focused around drinking all night -- really, let's do anything else!
I wish people understood why I make certain decisions. CF has a way of helping you prioritize your life; I'm always thinking about what is most important to me. At the top of my list are spending time with my family, taking care of my health, seeing the world, and making a positive impact on the people in my life and our planet. I have a pretty low threshold for things that don't matter to me or things that feel like a waste of time. A few years ago, when I was working at a job that made me feel empty (horrible boss, long hours, little flexibility, etc.), I made the decision to quit without another job lined up. I simply couldn't waste any more time there, and I was getting sick because of the stress and lack of time to take care of myself.
Maybe you relate to these things, maybe you don't. Maybe you have CF, maybe you don't. I think it's important to take time to better understand the people in your life, regardless of whether or not they are sick. These are a few of the things that I wish people knew about me; what do you wish people knew about you?
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