By Rebecca Moonitz
A few simple words that are meant to be harmless, but can actually cut deep: “But you don’t look sick.”
For people living with invisible illnesses, that phrase represents a lifetime of misunderstanding. It can be difficult to imagine that college students, the idyllic picture of health in the best time of their lives, may be suffering from chronic pain every day. Or, having a lifetime of others thinking one is fine because they can’t see the pain on the inside.
Invisible illnesses include rheumatoid arthritis, multiple sclerosis, diabetes, migraines and many more.
According to mollysfund.org, a site devoted to information about lupus, invisible illnesses are not observable based solely on physical appearance, as the symptoms are mostly internal. People with invisible illness can suffer from “debilitating pain, fatigue, dizziness, weakness, cognitive dysfunctions (brain fog), learning differences and mental disorders, as well as hearing and vision impairments.”
“Invisible illnesses cause additional stress in an already stressful life; The physical stress of being sick and weak. The interpersonal stress on relationships. The stress of losing control to the illness that runs your life.”
These conditions can hinder people from performing normal day to day activities that they once could handle. This constant sickness takes a toll not only on physical health, but mental health as well. Invisible illness can be especially difficult to deal because they are often chronic, so these people are fighting silently each and every day.
According to the Invisibility Awareness Week website, about 31 percent of adolescents suffer from at least one moderate or severe chronic condition.
Courtney Benjamin, a 20-year-old English major at the University of Florida, has been dealing with chronic illness since she was 11 years old. After consistent trips to the hospital at such a young age, Benjamin was diagnosed with Crohn’s disease, an inflammatory bowel disease. It causes inflammation of the lining of the digestive tract, which can lead to abdominal pain, severe diarrhea, fatigue, weight loss and malnutrition.
Dealing with an invisible illness is never easy, but it was especially hard for Benjamin as a young child. It was difficult for her to communicate with her peers and even her teachers about her illness.
“In middle school when I was first diagnosed, I was still kind of getting used to it myself and trying to explain to people around you is really hard, especially when people are more immature in middle school,” Benjamin says.
At one point, Benjamin had just come back to school from a stay in the hospital. In gym class, her teacher was mad that she did not participate in the mile run.
Even though the teacher was aware that Benjamin had a disease, she thought Benjamin was making an excuse.
“It’s just people not understanding and trying to making you feel badly about it,” Benjamin says.
Although Benjamin has found that over the years more and more people she interacts with are aware of the disease, it does not eliminate the difficulties of understanding an invisible illness.
“When I’m not feeling well, it’s hard for people to understand what that means,” Benjamin says. “If you see someone’s leg broken you know that their leg is hurting, you kind of understand that pain. But with an invisible illness, people don’t understand and they sometimes think you’re exaggerating it.”
Invisible illnesses cause additional stress in an already stressful life. The physical stress of being sick and weak all the time. The interpersonal stress on relationships. The stress of losing control to the illness that runs your life.
The physical illness can begin to take a toll on mental health.
Depression is 15 to 20 percent higher for the chronically ill than for the average person.
“It’s just an added stress to your daily life,” Benjamin says. “Just physically being in pain all the time is going to have a huge impact on your mood.”
Invisible illnesses can be difficult to diagnose, and even more difficult to find a treatment that works. Benjamin, for example, was diagnosed with clostridium difficile infection, or C. diff, before her doctors determined that it was actually Crohn’s.
That means spending hours and hours in the hospital, constantly enduring test after test. Continuously hearing that the doctors don’t know what’s wrong with you. Trying treatment after treatment, just hoping for some relief from the pain.
“It’s hard to think sometimes that it’s temporary because sometimes when you’re just feeling so sick it feels like it’s never going to stop,” Benjamin says. “You’re just miserable, especially if you’re in hospital and people just keep poking you all the time.”
With a chronic illness, your body becomes a slave to the pain. Your life has to revolve around the illness. Crohn’s disease doesn’t just stop if it’s your best friend’s birthday, or if you have a big test coming up or an important job interview.
I myself have experienced the effects of Crohn’s disease first hand, as my sister was diagnosed with the disease in 2009. It is heartbreaking to watch a loved one go through something you can’t quite comprehend, let alone help to alleviate.
I watched her leave the table halfway through every meal because her body rejected everything she ate. I watched her have to cancel on her friends time and time again because she was too sick to go out. I watched her grow paler and thinner as the Crohn’s commandeered her body.
My sister had six colonoscopies between the ages of 17 and 22. At the age of 19, she underwent invasive surgery where part of her intestines that contained scar tissue were removed.
I can’t imagine the kind of pain and trauma these experiences caused for my sister. To say I admire her strength and resilience is an understatement.
People like Benjamin and my sister go through pain most of us know nothing of, and probably never will. The best we can do as friends, family members and peers is to be educated and understanding.