High School Senior Explains What It's Like Living With Invisible Illnesses
Chronic illness is a struggle for thousands of people across the country. Often these illnesses are invisible.
Anna Susser is a 17-year-old high school senior who lives with several invisible illnesses including arthritis, hyperthyroidism, depression, anxiety and anemia. We asked her to share her experience living with these illnesses and what it’s like when others can’t relate to how she feels.
Dr. Lois Krahn, a psychiatrist based at Mayo Clinic in Scottsdale, provided a broader perspective on what it’s like for people living with invisible illnesses.
Some of my friends say things like, “You’re so lucky you get to miss so much school.” And when I tell people how sick I feel, they say, “No – don’t worry. You look great.” And the thing is I know I look fine. But I’m not always.
I used to judge people with invisible illnesses too. When I thought about someone with chronic fatigue needing 10 hours of sleep a day, I thought, “Wow, that person must be so lazy.” I didn’t understand why they couldn’t function on 6 hours of sleep like me. Now, I do understand.
Sometimes I explain it to people like this: There’s this thing called the spoon theory. Imagine you grab a handful of spoons, and each one represents a unit of energy that you use throughout your day. You wake up with ten spoons - time to make breakfast - that’s two spoons. Then you want to take your dog for a walk - another spoon. Go to school - four more spoons. Now you’ve only got three spoons left for the rest of the day. So you can make yourself dinner and clean your room OR you can do homework. That’s it. It takes me more spoons to do things than most other people, and once I’m out, I’m out.
While I’m lucky that invisible illnesses haven’t destroyed my world, they have changed my everyday life. There’s a sadness and a loneliness to having an illness most people can’t see and don’t understand. My favorite thing to do is go to concerts. I recently went to the Mac DeMarco show, which was incredible, and during one of my favorite songs, called “Salad Days,” my legs hurt so bad from standing that I had to leave the venue to sit. And it sucked, because as I listened to the concert from outside the room; I felt so removed. I don’t think this is something most people my age can understand.
I know from living with invisible illnesses that it’s really tiring to have to constantly advocate for myself to people who don’t really believe that anything is wrong. If someone tells you they can’t do something or that they need something, believe them. Even if you think they look great.