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“I had learned that you garner respect when you appear cool under pressure, because emotion is a sign of weakness – as if you can’t handle what life is giving you. I treated my illness the same way, in that if you always act as though things are okay, it would go away.”


 

From day one we are given a gender identity, and with this comes societal expectations of how we should behave in accordance with that identity. To be a “man” in my society is to be strong, confident, and above all else, independent. A man does not need help from others, he gives it to those around him, and to ask for help is seen as weakness because anything weak is generally frowned upon.
            My hometown was small, predominantly white-suburban, and mostly middle class. As such, we fit in with many of the towns near us, and in America as a whole. It was a very sports-focused town, and throughout my schooling our sports teams were held in high regard – getting most of the government’s school funding, might I add.
            So, like all the other boys in town, I was involved in several sports growing up: tee-ball, soccer, even tennis and track. Unfortunately for me, I consistently struggled to keep up with the pack, finding it more and more difficult to match my peers in terms of strength, endurance, and eventually motivation to play.

At age 6, I was diagnosed with Cystic Fibrosis. I will spare you the nitty-gritty details, but the main two areas in which this chronic, genetic disorder affects me is in my ability to digest fats and proteins, and my lungs are continuously filled with thick mucus which, naturally, negatively affects breathing and lung capacity.
            At that young age, I don’t believe I truly understood the nature of this disorder and how it would affect me as I got older. I did understand that I needed to take pills when I ate food, and that I was told to be careful about pushing myself too hard during any physical activity.
            My coaches and teachers were told about how I needed to be watched to make sure I was breathing alright, and not struggling too much. What I remember is a growing frustration at never being able to keep up with the others, and not getting more central positions on the pitch.
            I attributed it to “the other kids were just better.”
            Eventually, my motivation for playing sports pattered out, replaced by a growing interest in video games, reading, and other things generally considered “nerdy.”

In retrospect, several things happened that may have contributed to how that motivation pattered out, catalysed by my diagnosis with CF. For one thing, I was no longer being pushed to compete as hard as the other boys on my team were. Others were told to practice hard, compete hard and “get hurt if need be,” whereas I was told to take it easy, or was given positions that were less risky. It’s no wonder my motivation to play petered out – I was never the centre or the star batter.
            If anything, my coaches did not push me to become better because they were told I was not capable of it anymore. But at that age, I didn’t care: more time to watch Toonami and play N64! Unknown to me, however, my parents were actively attempting to stay in our town’s friend groups, which was becoming more difficult as I played less and less sports.
            Our town had established the social “haves” and “have-nots,” based on whose sons played sports and who didn’t.

Flash forward a few years, and I had begun to think of myself within the context of my CF properly. Several bullies had caught on to me being the “sick kid,” and knew that my CF was yet another thing they could make fun of me for.
            Thinking of this experience in a more socially-conscious sense, I represented the thing that the “masculine man” must fear: being sick, weak, and dependent. They were also given more ammunition because I had to go to the nurse’s office to get my enzymes for lunch while the “retarded kids” went for their various medications, so de facto I was also a “retarded kid,” (not my words, you understand).
            Easy bullying material I’m sure, but I did come with a surprising resilience to it as a child, which was a blessing.

As a preteen and teen, I lashed out more at these bullies – fighting fire with fire, I guess – but also because I was tired of this consistent poking at my illness. I was also finally becoming more aware of the expectations set by my society, and how I already had a heavy handicap (no pun intended) relative to those “goals.”
            Erik Erikson, a famous developmental psychologist talked about how a teenager, as a budding adult, is in search for their “identity,” and mental conflict and strife occurs when the teen finds themselves unable to achieve their “identity.”
            I had always considered myself to be a “man” of sorts, but less in the physical sense and more so regarding confidence and emotional restrictions. I had not cried since middle school and suppressed most of my emotional output to appear cool and aloof.
            To me, I had learned that you garner respect when you appear cool under pressure, because emotion is a sign of weakness – as if you can’t handle what life is giving you. I treated my illness the same way, in that if you always act as though things are okay, it would go away.
            I was never consistent with doing my treatments because I found them to be annoying, inconvenient, and time-consuming. To this day, I still have a nasty habit of putting off my treatments until I “have the time” to do them. In those moments of treatment, I do feel “sick,” which compounds my aversion.

I would say it was during my undergrad that I felt most in tune with being “a man.”
            I was proving my intellect by going to college, I had an adequate list of girls I had dated and had finally found a sport I enjoyed.
            Fencing allowed me to set my own pace with a sport, and before long I was fencing more and getting stronger. I had a bigger lung capacity, I lost weight, and was gaining well-defined muscle mass. In that sense, of course, my doctors were quite happy – as was I. With that feeling of physical prowess I gained the confidence needed to be flirty and seductive, another tenant of being a “man.”
            Undergrad hook-up culture played a factor, of course, but during those years I was attractive, confident, and seductive. I wholeheartedly embraced the “man” I had become, but it also came at the cost of suppressing the appearance of my CF. I did not leave my treatment equipment out in the open, I took my pills surreptitiously, and I only told those closest to me about my CF. To admit my condition out loud was to poke a hole in my inflating ego and would make me question if this new me was truly “me” or not. Alas, undergrad ended, and with it my easy access to exercise and a sport I was motivated to do.

I think my immaturity regarding my illness also ended at that point, which inevitably came with a backlash. Towards the end of my undergrad, and for some time after, I had a sort of “quarter-life crisis” that put me into a deep funk.
            I began ruminating a lot on a major chapter of my life closing and began wondering in the grand scheme of things how many chapters I would have compared to my friends.
            How long could I ride things out acting like everyone else, before my outward appearance would match my internal sickly one? I suppose that “teenager immortality” had come to an end, and suddenly I realised my CF was a part of all of me, not just that part I would hide.
             Good news though: I did eventually crawl out of that funk, and am now realising that my life is defined by what I do and not how long it is. I realise now that physical fitness and being flirty is not the only way to be a “man,” and that the positive aspects of “masculinity” – such as confidence, and a desire to achieve – are not limited by my CF.

My life story aside, what interests me is how often my CF is often fundamentally incompatible with societal expectations of “manliness.”
            My coaches stopped pushing me to be better, I was targeted as “weak” by others and I lost motivation to keep up with the pack, due to a frustration that I could never keep up anyway. It was as though there was no chance of me ever being the star baseball player or soccer player because I was the “kid with CF,” and so few people would bother. Resilience kept my spirits up for a long time, but there was always that gnawing doubt about how much I could do while having CF.
            For a long time, as I’ve mentioned above, it shattered my belief that I could be a “man,” in the old-fashioned sense, and I was especially sensitive to how others perceived me, causing me to attempt to hide that aspect of myself. I was somewhat lucky to have that option, considering other, more obvious illnesses.
            Because over time I had come to believe that my CF and being a “man” were incompatible. Even now, I’m always trying to skirt the line by embracing my CF and what it means to be chronically “ill,” and to also establish my “manliness” among those around me. I realise now that society’s rules were what created those periods of struggle, and that it was my own adherence to those rules that led me to hide my CF and act as though I was “fine.”
            I have learned that society is as flawed as the people who make it, and I can still embrace my CF and be a “man,” although neither completely define who I am.

I mentioned earlier that our lives are defined by what we do, and not by how long they are. With that in mind, let me share that I am on my second year of a doctoral program in psychology. Part of that PhD means I work with children and adolescents within schools, specifically helping kids with autism and learning disorders. I do not let others’ definitions of “manliness” affect my work or my desire to help others and I’m more open about my CF and how it affects me.

Admittedly, I do still struggle a bit with my treatments, but that’s got more to do with distractibility and old habits than anything else. And with regards to how I view my CF now? I would much rather let the work I do define me than the way I present myself physically, because to me it’s about what you do with your entire life than how you look or act in a moment that defines your individual masculinity.

 

Andrew Vall is a 2nd-year doctoral student of Psychology currently studying in Chicago, IL at Adler University. He grew up on Long Island, New York.

“My interest in men’s mental health stems from my university’s emphasis on preventative therapy, and my own studies in Community Psychology. My experiences growing up with CF, and the social atmosphere of how people with disabilities are viewed, has also influenced my focus on the empowerment and understanding of people with disabilities.”

@manageofficial
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If you or someone you care about is affected by cystic fibrosis, you can find out more information and support at www.cysticfibrosis.org.uk