What does your morning routine look like?
As soon as I wake up, I begin the process of clearing out my lungs. I hook myself up to two pieces of medical equipment. A nebulizer delivers medication into my lungs and I wear a vest that vibrates to help me cough. I cough, and I cough, and I cough, and half an hour later, I’m ready to start my day.
I was born with a rare genetic disorder called Primary Ciliary Dyskinesia (PCD) that causes chronic respiratory illness, hearing problems, and chronic sinusitis, among other things. It feels like having one of those colds that is irritating but not debilitating—this is what “healthy” feels like to me, like I have one of those colds every day. Put in simple terms, the cilia—the microscopic hairs that act as your body’s cleaners—in my body don’t work. When I do get an infection, it hits harder and lasts longer than it would for other people because of my body’s inability to clear itself.
I often get asked, “Are you sick?” People look at me with sympathy when they hear my deep cough and shake their heads, tell me it must be that virus going around. When I’m having a “healthy” day, that question stings more than I like to admit. It reminds me that, even at my best, I am still sick and always will be. And in each of those moments, I have to decide whether I want to disclose my illness and explain that I’m never actually going to get better.
The decision to disclose illness can be difficult. Tufts senior Gemma Stern, who has a rare genetic disorder called Incontinentia Pigmenti, talked to me about when she decides to disclose: “At Tufts…it’s been this process of almost having to come out to people. Once I get close with someone I feel like it’s something I have to tell them, and it’s not because I’m worried they won’t accept me, but that they won’t understand me as a whole until I do.”
Disclosure is important to me, though, because you wouldn’t know about my illness unless I told you. My PCD is largely invisible, partially because I have never been open about it, and partially because people have preconceived, subconscious ideas of what illness looks like. When I do choose to disclose my disorder, the information is frequently met with surprise. People say, “You don’t look sick!” as if people with chronic illness must look a certain way—as if my chronic illness should somehow be manifested in my appearance in order to be valid.
We need to realize that physical genetic differences and chronic illnesses exist at Tufts, both visible ones and invisible ones. Valuable discourse is beginning to happen on campus about mental illness, but I have not heard anything about physical illness. At Tufts, physical health is too often taken for granted—especially on a campus where students are expected to excel at classes, take on leadership positions in extracurricular activities, be athletes, and hold internships all at the same time.
It’s hard not to compare yourself to your peers, and those of us with illnesses often feel like we fall short. Jon Atkins, who has Postural Orthostatic Tachycardia Syndrome (POTS), says he struggles with the disconnect between what he wants to do and what his body will allow. “My goal is to do everything, meet all deadlines and not make excuses but I often feel like I have way less time in the day than I need,” He said, “A lot of times I have to plan for three to four hours throughout a given day where I feel so dehydrated and lightheaded that I just can’t do anything.” Another student, Chloe Hyman, who has an eye disease called Multifocal Choroiditis, commented, “It probably takes [me] one and a half times longer to read anything anybody else can read, and we all know how much work an average college student has.”
Students with chronic illnesses and genetic differences not only need to exert more effort to get through their regular schedule, but also need to schedule in time for health care. Every morning, for example, I have to wake up early enough to complete my treatments. When I’m sick, I need to make time for extra treatments. Jon spoke about the way his diagnosis changed his everyday routine: “There were a lot of lifestyle changes that were required… things I actively had to work on and make sure I was getting myself healthy.” Healthcare, such as hospital visits or treatments, also have to be taken into account. “A lot of the classes I want to take,” Chloe said, “are usually on Tuesday and Thursday mornings, which is problematic, because I have to go to the eye doctor on those days several times a semester.”
The effects of chronic illness are felt not only in academic life, but also in social life. Having a chronic illness can be so exhausting day-to-day that, by the time the weekend comes around, it’s sometimes hard to muster up the energy to go out. Amanda Rhine, who has Common Variable Immune Disorder, talked about how it’s sometimes hard to keep up. “My friends [would] say, ‘let’s go out, let’s do this, let’s do that,’ and for the first few years, I just couldn’t. I needed the sober sleep.” And when friends get sick, it can be dangerous for people with chronic illness who are immunocompromised to be around them: “Everybody in my hall would be getting a cold,” Amanda said, “but I would be getting sinus infections and bronchitis.”
Despite the challenges ill students face, many suppress their chronic illnesses and genetic disorders—many of which are already invisible—in order to appear normal. Each student I talked to made efforts to minimize the effects of their genetic difference. “Chronic illness is something that’s just not talked about,” said Amanda. Gemma had similar feelings: “Even a lot of my close friends here have no idea that I have any type of disorder because I don’t talk about it. It’s just not something that’s talked about at college.” Maybe we feel the need to cover up our illnesses because we’re afraid we won’t be supported by our peers, professors, and school. I have so much trouble asking for help because I fear being viewed as lazy, inadequate, and insufficient. We need to break down the stigma attached to physical illness, and we can begin that process by having conversations and supporting our friends who choose to open up.
So let’s talk about physical illness and genetic disorders. Let’s talk about all the different ways our bodies work. Let’s stop teasing our friends if they are too tired to go out and let’s stop holding on to this idea that we must do everything, all the time, to be successful. Let’s let go of our ableist assumptions about people, and our assumption that appearance of health means . When someone says they are sick, believe them even if they don’t look like your visualization of illness. Let’s talk. Tell me about your illnesses, your differences, your disorders, and I’ll tell you about my morning routine.
If you live with a chronic illness or genetic disorder and are interested in getting involved in a support group, contact the author at firstname.lastname@example.org.