Five years ago, I was diagnosed with a rare form of cancer, one that required some of the most aggressive treatments that the FDA currently allows. I am lucky to be alive. But despite my luck — or unluck — the long term consequences of this disease have followed me for a quarter of the time I have been alive. The cancer community, particularly the young adult and childhood cancer communities, do not like to talk about these lasting effects — that is, the aftermath of the disease — because they destroy a perfectly marketable narrative: you fought, you won and you beat cancer. You are a cancer survivor. And with that shiny new title comes a whole new perspective on life, an ability to “not sweat the small stuff” because “at least you’re alive.”
The reality, however, is not as easy to sell. Being at Yale and learning how to interact with my peers and teachers about my health struggles has made this ever more apparent.
Cancer survivors suffer greatly at the hands of the treatments that saved them. Infertility, chronic pain, organ damage, fatigue, PTSD, depression, anxiety, recurrence and more are all very real fears and realities for my fellow survivors and for me. But there is an expectation that a survivor, especially a child or young adult, should feel nothing but grateful after cancer treatment. Outsiders struggle to understand our grief about ongoing challenges. This can be an incredibly isolating experience, one that makes many of us feel unseen and forgotten. Now, I consider myself part of the disability community and have found an amazing support system here at Yale. Nevertheless, navigating my health on campus continues to be a challenge in unexpected ways.
During Disability Empowerment for Yale meetings, we talk about what Yale as an institution could do better. From transportation, to facilities, to more understanding for testing accommodations, there are plenty of things to lobby for. However, the overlooked story of many people in the room, like that of cancer survivors, is the feeling of isolation and misunderstanding from our peers with regard to our disabilities.
Unlike many other varieties of hardship, such as financial stress, the loss of loved ones and family turmoil, disability and disease are typically reserved for later years in life. Your grandma has arthritis or osteoporosis, not you or your friend.
Being ill and young just doesn’t seem to fit in the same sentence. Yes, we’ve all had a cold, maybe ended up in the hospital with a bad case of mono or strep, but for the most part, you are healthy and strong, and you bounce back every time. But for me, hospitals, illness, pain and fear are a part of my daily reality. I cannot simply walk from Linsly-Chittenden to Science Hill and back to meet you at Trumbull for lunch; I am on crutches and have chronic pain. I cannot just go to a party and take shots; I already have the liver of a heavy alcoholic. I cannot pull all-nighters every week and brag about how little I sleep, because I am already so tired.
Being ill and young means watching everyone around you abuse their own bodies and health with no consequences. It means having to think a million times to make a decision that everyone around you seems to be able to make in a second: going from point A to point B, running across the street, entering a certain building, dorm room, classroom.
Dealing with disability means knowing how much your body can hurt, your mind can ache and how fragile we really are. Worst of all, it means having to confront mortality. As per the unfortunately true cliche: knowledge is power, but ignorance is bliss. I would give anything for just a little bit of that bliss.
This is just my personal experience grappling with my own disabilities, but there are so many varieties that I’ve learned about through DEFY. Autoimmune disorders, birth defects, learning disabilities and life altering accidents, are only a taste of what the people I have grown to love have to go through.
And yet, these people are still happy, powerful and amazing. Working, fighting, laughing, living every day despite and because of limitations that are outside of their control. This does not make us inspirational, or “special,” or whatever the new St. Jude’s ad comes up with. This makes us human. Humans worthy of respect and empathy, worthy of your time to learn about and respect our needs.
What I mean to say is, yes, being young with a disability is a different sort of challenge from what college-age students typically confront, but it has made those of us who live this life into the people we are today.
The true challenge is not feeling like we belong in our own age group, and struggling to feel seen by our able-bodied peers, professors and administrators. We do not need your pity or get-well-soon cards hoping for a time when it will all go away, because for many of us, it won’t. And that fantasy of a cure or of a survivor doesn’t help anyone. We want your well wishes in the present moment, no matter what the future may hold.
At the end of the day, what we need is for you to listen and to try to understand. Understand that when we say that certain things can be difficult, we need you to meet us halfway. Ultimately, it’s not about inaction or ignoring our limitations. Rather, it’s about recognizing those limitations and taking the extra second to consider how your actions and words have an impact. And if you don’t know, just say so. More likely than not, we’ll be happy to explain. Saying something is always better than saying nothing at all.
MAFALDA VON ALVENSLEBEN is a sophomore in Benjamin Franklin College. Contact her at firstname.lastname@example.org .