Jess looks and acts like a typical, healthy 29-year-old female. She rides her bike nearly 50 miles a week, participates in dragon boat, has a degree in environmental science, volunteers for multiple organizations, takes care of our dog and reads a book a day. Jess is disabled.
When people hear the word “disabled,” they immediately think of someone who can’t walk, or hear, or perform simple tasks on their own. Jess can do all those things and more, but she was diagnosed with cystic fibrosis, and received a double lung transplant over six years ago.
For the most part, her disability doesn’t prevent her from doing things that she loves to do, though it hinders her in other ways. She wears a pain patch on her arm because without it she would be in constant pain. She takes a pill before every meal to prevent stomach pain, which sometimes happens, anyway. She feels enormous pressure to overcome that pain, to overachieve and satisfy everyone, which leads to stress. Her stress can cause bouts of pancreatitis. It starts in her abdomen and works its way around to her back. The pain is so severe that it usually puts her in the hospital for two to three weeks.
A lot of people don’t get it. They don’t understand how someone who looks so healthy and acts so “normal” can be disabled. I suspect a lot of people don’t fully grasp what she’s gone through already, and what she goes through every day. They would never suspect the feeding tube in her stomach or the port in her chest. They see her smiling and laughing, but don’t see her take 50 pills a day. They see her running and biking, but don’t see the pain she sometimes experiences after eating something as small as a chocolate bar.
Our friends don’t get it. They’re puzzled when we go out to dinner and she only eats half her meal. They’re confused by the bruising on her legs. They think she’s clumsy, which isn’t entirely false, but they don’t know that it’s a side effect of her medication. They’re disappointed when we have to cancel plans or leave an event early. They think she’s flaky or not committed, but in truth, she’s often on the couch in agony while everyone else is having fun.
I admit that I understand where our friends are coming from; sometimes, I don’t get it either. I’m confused when she suddenly needs help with things I’ve seen her do hundreds of times. I’m baffled when we’re sitting on the couch, and she goes from a state of calm to one of pain in a split second.
Here’s what I do know; Jess is strong. She laughs when I tell her that and asks me what choice she has. She has a point: if she didn’t take all those pills, work out to stay healthy and occupy her mind with work and books, she would not be with us today.
Jess doesn’t like people to know she’s disabled, because the term has such negative connotations. She doesn’t want pity and she doesn’t want people to think she is using her health as an excuse. She wants you to think that she lives just like you.
Cystic fibrosis is called “the invisible illness,” which is fitting. You couldn’t pick a person with cystic fibrosis out of a line-up. I certainly didn’t know it when I first met Jess at a mixer event. We immediately hit it off and talked for over two hours, ignoring everyone else around us. I didn’t even know after our first date: dinner, a movie and a stroll around an outdoor mall. But had I known, it wouldn’t have changed anything. I’m lucky—blessed, really—that she chooses to spend what time she has with me. It’s not always easy, but it’s always worth it.
I interviewed Jess for Broken and Woken, and to follow are excerpts from the conversation we had.
How would you define your disability? If I defined anyone by their disability, that would tell me nothing about their true self. People often say they aren’t defined by their disease, and I’d have to agree. I’m a nearly 30-something active volunteer, dragonboat-paddling, jewelry-creating, ice cream-craving dog-mom and loving partner to my fiancé. But between the cracks, you’ll find a chronically ill patient with a limited lifespan. I’ve had cystic fibrosis since birth and had to have a double lung transplant when I was 23 because the constant lung infections had destroyed them beyond any other treatment. I am also diabetic and experience daily pain because of my damaged pancreas. I’ve always searched for normalcy in life, and currently feel as normal a young adult with chronic illness can.
Do you have contact with other patients with the same disability? When I was waiting for a double lung transplant, the Internet became a wonderful place for me to talk with other individuals with cystic fibrosis. Because two people with CF can spread their infections with each other, it is frowned upon to meet in person. However, I find that the benefits of knowing someone in real life far outweigh the consequences and having normal working lungs helps assuage any fears of cross-infection. I have quite a few close friends that I visit with regularly. I still have my connections with cystic fibrosis and lung transplant online, but I honestly cherish my real life experiences more.
Do you consider yourself disabled? According to the government and my insurance companies, I am disabled. Most days, I do not feel disabled. My life is fairly typical when I am not in the hospital with pancreatitis, a consequence of a lifetime of cystic fibrosis and medications. I have a loving fiancé, a dog, many friends and hobbies. Sometimes, as odd as it sounds, I wish I had a career in my field of study. After my transplant, I finished two bachelor’s degrees and even was accepted to graduate school in Raleigh, NC for hydrologic sciences. Unfortunately, a full-time job could be a deadly future for me. I would need a full-time job in order to get insurance and the lack of time for medical appointments and the amount of stress I would incur on a daily basis would leave me in the hospital much more often than I am there now. I cannot be self-sufficient, and that is difficult for someone who craves independence.
What would you say to those in your situation? To other disabled individuals, I would let them know they are not alone in trying to find identity in the term “disabled”. A little bit of denial goes a long way. Try your best to live as “normal” a life as you can, outside of your illness or abilities. Work, find love, raise a family (or just dogs), discover new hobbies and love those closest to you.
Jeremy Lambert is a freelance writer who enjoys spending time with his fiance, dog, and computer. When he's not writing, he's probably yelling at the TV during sports. You can check out his work at wordsonapole.com.