For most of my young adult life, I lived in extremes — I was either overcommitted in school and extracurricular activities, or I was bedbound and hospitalized. I spent so much time trying to prove that illness didn't define me that the quest for invincibility itself began to overwhelm my identity.
I am a lifelong patient with multiple chronic illnesses, including primary ciliary dyskinesia (PCD), a rare genetic lung disease, so I've had to coexist with symptoms and setbacks for as long as I could remember. As a college writing instructor, I interact with young adults every day, and I see firsthand the sense of invincibility that accompanies youth. My students have little reason to believe the long days, the all-nighters, and the jam-packed academic and social lives they lead will catch up to them. Unfortunately, the presence of chronic illness can exacerbate this tendency — and for many of us, the stakes can be quite high.
Currently, an estimated 133 million patients live with chronic illness. It is tempting to focus more exclusively on common conditions like heart disease, diabetes and lung disease when we think about chronic illness. Likewise, it is easy to dismiss patients with chronic illness as the elderly — those who have lived long enough to acquire the inevitable diseases of longevity. This is an incomplete picture of the chronic illness population, however.
Some 50 million Americans live with autoimmune disease, which often manifest during childbearing years. A disproportionate number of autoimmune disease patients are women. Consider that nine out of ten patients with lupus, an autoimmune disease that can affect skin, joints and organs, are female, and most patients who develop symptoms do so between the ages of 15 and 45.
What's more, there are more than 6,000 classified rare diseases in the United States that affect almost 30 million Americans. Rare disease patients are an evolving segment of the younger chronic illness community, as many of us are now living into adulthood for the first time, instead of succumbing to childhood illness as in generations past. Just a few decades ago, patients with cystic fibrosis (CF) were not expected to survive past grade school. In 2009, the median survival age was in the mid-30s, meaning many more patients are living long enough to go to college, to have careers and relationships, even have children themselves.
When I first began writing about and advocating for young adults with chronic illness in 2006, I was a 26-year-old graduate student struggling to reconcile the demands of my body with the needs of my spirit. The more I pushed back against illness — I once ran a conference call for my college newspaper from an ICU room, rather than risk not making a deadline — the more illness threatened to interfere with the things that mattered most to me.
We associate youth with vitality and energy, and in so many ways, chronic illness defies this. Our symptoms — pain, fatigue, weakness or a host of others — can make us physically lag behind our peers. I didn't want people to notice me eschewing the stairs for the elevator on days when I didn't have enough air to walk to my classroom, or see how slowly I made my way through congested city streets when I was weakened from infection and other complications of the medicines I take.
We juggle doctor appointments, hospitalizations, medications and side effects, and unpredictable symptoms that pull us away from our healthy peers, which can be incredibly isolating. After all, young adulthood is a time of evolution and creation. We're creating social identities, academic identities, and we're laying the groundwork for professional identities, too. Who wants to miss a social event or cancel a date, face delays in finishing course work, or get off track at work because of our health demands?
Who wants to be known as the sick one?
As a teenager and young adult, I lived as if the extremes to which I pushed my body would not have long-term consequences, even when the proof that they already were was everywhere: the bruises from IVs, the dark circles from exhaustion, the hacking cough that echoed and bounced off the walls of my freshman dorm. Pushing myself and increasing my stress levels did not cause my illnesses, but the realities of them certainly did not help me fight off infections, either.
That's the other complexity here — not only does chronic illness challenge the idea that young people are supposed to be healthy and active, but there's often so much more on the line for us, things we'd rather not confront. For many of us, preventing disease progression and long-term complications is one of the most important things we can do, and that means having to make difficult choices about where to expend our energy and when to give in to the realities of chronic illness.
I've long advocated that the universal aspects of chronic illness unite us far more than disease-specific symptoms do, and perhaps nowhere is this universality more present than in the desire to outrun or defy illness.
It has taken me several years, but I've finally figured out that admitting when my body's needs trump other desires makes a huge difference. When I'm not pushing so hard to be invincible and to show that illness won't stop me, I actually feel better and have a more stable health status. In return, I am more productive and able to do the things I enjoy, and my response to illness no longer defines me.