Living with the Stigma of Chronic Disease

Think back to the worst flu you ever had. The pounding headache; dizziness; crushing exhaustion; muscle aches like you’d just spent a week lifting weights; maybe a little nausea thrown in. Now imagine that despite your illness you had to go to work or run some errands. You’d probably be a lot slower than usual and make silly mistakes. While you may not look sick exactly, you also might not look completely normal. People might look at you funny or even yell at you for getting in their way or slowing them down.

Now imagine that’s your life every single day. There are plenty of chronic conditions that make you feel terrible on the inside while you seem fine on the outside, such as multiple sclerosis or Parkinson’s disease, so people jump to their own conclusions about why you might be moving at a different pace. Then there are conditions, such as psoriasis, that can make you look sick on the outside even when you feel perfectly well, resulting in people shying away from you or even refusing you for employment. Finally, there are conditions, such as diabetes or epilepsy, that are poorly understood by the public, which can result in decisions to exclude you from professional and recreational activities that you are perfectly capable of accomplishing.

Sick Lungs Don’t Show

Have you ever stared daggers at a seemingly healthy person using a handicapped space? Maybe that person was Karen Deitemeyer, a 68-year-old from Kissimmee, FL, who, on good days, looks just fine but in fact suffers from chronic obstructive pulmonary disease (COPD). No matter how she may appear on the outside, she needs that handicapped parking space. With significantly reduced lung function, walking even short distances can leave her exhausted and gasping for breath. But that doesn’t stop people from giving her dirty looks when she uses it.

On not-so-good days, Karen carries an oxygen tank with her. That eliminates the stares about the parking place but brings on a whole new set of judgments. “When I’m using my oxygen, she says, “sometimes I get the impression that people are thinking, well, you kind of deserve it. You obviously have a lung disease, and most lung diseases come about because you have smoked.”

In fact, Karen’s disease is related to past smoking, but she doesn’t need strangers to remind her of her past mistakes. In fact, she volunteers as a patient advocate for the COPD Foundation, speaking regularly about her experience in order to discourage others from using tobacco.

Overall, Karen’s family and friends are supportive, but even surrounded by people who understand, she still has days where they forget that she can’t do the laundry and vacuum the house in the same day, that long shopping trips are out of the question on bad days, and that any group activity involving lots of walking invariably means that everyone has to adopt a leisurely pace or go on without her while she catches her breath.

Should You be Eating That?

Karin Hehenberger, MD, PhD, has lived most of her life with type 1 diabetes. One of the major stigmas associated with this condition revolves around food. As a young woman in medical school, she told few people about her condition, so people asked her whether she had an eating disorder when she did not join them for a sweet treat during coffee breaks.

As Dr. Hehenberger has grown older, she has learned to accept her diabetes more and even helps others with chronic disease make the most of their lives by founding of Lyfebulb, an initiative aimed at connecting people with chronic diseases and inspiring them to improve their lifestyles and well-being. Today, more and more of the people surrounding her know she has type 1 diabetes, but that doesn’t stop comments about food. “When you say you have diabetes at a function, and you pick up a piece of dessert of have a glass of wine, people may say, are you really supposed to have that?” She says. “That, to me, is very offensive, how a person who does not know about the disease feels they should be telling the person what they should be doing. I know people who would give that kind of advice are trying to be helpful, but it’s probably not a good idea.”

It can be even worse, she says, when people lecture parents about how they manage chronic disease in their children. Well-meaning people may confront parents of children with type 1 diabetes for, say, allowing them to eat cake at a birthday party. “There may be a need for further education but not at the moment of the party,” says Dr. Hehenberger.

It’s Not Contagious

Other challenges Dr. Hehenberger has faced include being barred from scuba diving on vacation because of concerns that she might lose consciousness while under water and having difficulty finding medical insurance that will cover someone with an established medical diagnosis. Still, she says, her challenges are likely less painful than those whose chronic disease is more difficult to conceal, such as conditions that cause disfiguration.

Josephine Sciortino, 42, of Montreal, Canada knows all about that. She suffers from vitiligo, a perfectly harmless, non-communicable disease that causes skin depigmentation. It is most apparent on her hands, and occasionally people shy away from shaking her somewhat mottled-looking hand. It used to bother her, but now she just grabs their hand, gives it a solid shake, and says, “It’s not contagious.”

Dr. Hehenberger would approve. “If you can get to the point where the chronic disease is part of your personality but not the dominating part, then you’re really in a good place,” she says. “Most chronic diseases have no cure. They can only be treated. So, you have to figure out a way to live where you’re not constantly angry with the disease.”