Is CF A Secret?
I have CF. For most of my life, that has been public knowledge. I shared it with people nonchalantly, as I would my favorite food. It was so normalized to me by my parents that I had no filter of when it would be appropriate to share about my illness or not. I believe this was a positive, especially being young. I did not need any insecurities as a child, because surely I would deal with them the rest of my life.
Making it public
Many days of the year would be solely dedicated to my chronic illness. A lot of these days were CF clinic visits, where the whole day was about me, then followed by my family members calling my parents to ask how I am doing and inquire about the results of my tests. The other two stand out days were the Walk to Make Cystic Fibrosis History and the day my Mom would come into my class at school and talk to all my classmates about CF. She told them what it was in simple terms, then told them how I manage it with my diet, my treatments, my medications and lifestyle.
Most importantly, she told them I had it and that while I had CF, I was just like them- a regular child. This assured them and reassured me. Then no one would ask why at snack time I was scarfing down ten pills. No one would wonder why I am coughing. It was perfect, I truly felt like I was just a regular student in the class. It was easier to have everyone know.
My sister also has CF, so one year my Mom did her annual presentation in the gym so that both classes could attend. Another student at our school had CF, but his mother was reluctant to participate in this event. I was so confused why she wouldn’t want her and her child to be understood better by our school peers. This was my first experience where I realized that CF could be a secret. It didn’t actually have to be public knowledge. The rest of the year our family would volunteer to give speeches at fundraisers about our life with CF.
Dialing it down
As I got older and my CF got worse, I didn’t want to volunteer anymore. It was exhausting to share traumatic parts of my life to strangers. Just to hear the usual responses, “You are so strong”, or “You inspire me”. I felt like that was the worst thing to hear because it didn’t feel genuine anymore. It just felt like they couldn’t think of anything else to say. I know now that they mean well, and it was a kind thing to do. I appreciate it, but at the time I did not understand, nor feel gratitude for people trying to understand my life. I was only a child, I didn’t even understand what CF was myself.
When I went to high school I had to tell my teachers for medical reasons and to get accommodations. I had been frequently posting on social media about CF so it was easy for people to find out that I had it, even though I didn’t tell anyone face to face. It was definitely easier this way. But I kept a lot of the details to myself.
Best of both worlds
In college I did not tell anyone except for my roommate. Surely she would wonder why she would be woken up at 5:00 am to an air compressor administering my nebulizer meds. She was incredibly understanding. However, I found trouble with people who were not so understanding. When I didn't tell people all of the CF details, I felt like they expected too much, or, they took it personally when I couldn’t go out as often or when I had a bad mental health day. It was exhausting to keep up with people when all I wanted to do was crawl in my bed for days and days.
Around this time, I started to get offers for projects that were not only related to CF, but related to my degree; illustration. I got to design artwork for big name companies for collaborations with CF organizations. I felt more connected to these advocacy events because it felt more like me. If I didn’t have CF and I wasn’t so open about it, no one would have known and I would have never gotten these opportunities. This gave me a more positive outlook on how sharing my disability can open doors, and doesn’t have to be a bad thing.
This led me to post advocacy videos online to educate about CF, in hopes of the public gaining a better understanding. Additionally, this helped me gain a better understanding of how public I would like my CF journey to be.
Tips for talking about CF
Telling someone you have CF is one thing, but telling someone everything about it is daunting. The good news is, it is 100% your own decision. You have the control of how much or how little to say. Balancing the pros and cons was something that helped me in deciding. I would recommend this process in transition periods. This could include meeting new people, starting a new job or the beginning of a new semester. These are great opportunities to start fresh, and the choice is yours.
Additionally, in pre-existing relationships, this subject can be revisited which can be helpful if you are feeling like someone needs to have a better understanding of you and your life. I have found myself saying phrases such as, “I am not sure if I’ve mentioned this before, but I have CF and that is one of the reasons I am sick a lot”, or “Something interesting about my chronic illness is that it makes me feel tired most days because my body is working so hard.” I try to wait in conversations where I can naturally bring it up, because some people can take this news lightly, and others are hit hard.
If you chose to keep your CF private, I have found a lot of ways that I can feel connected to people and understood, without exposing my illness to the world. Talking one on one with someone you trust like a family member or a medical professional. Or, reaching out to support groups online. You should feel supported in your decision whatever you may choose.
At the end of the day, your story is your story. How amazing is it to have that power?
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