“Life with an ‘Invisible’ Illness”

Reprinted from U.S.NewsHEALTH by Lisa Esposito, January 1, 2016

When you feel sick but look fine, people can misunderstand.

invisible illness

Just because you can’t see the symptoms doesn’t mean they aren’t there.

Cynical looks from strangers when you park in a handicapped accessible space. Classmates who wonder why your child uses the elevator. Raised eyebrows when you can’t volunteer at church. When people have an “invisible” illness – coping with pain, exhaustion or other unseen symptoms – uncomfortable situations can arise.

Here’s how people deal with the pressure to act healthy, and why a little empathy goes a long way.

Fatigue Others Don’t Feel

“Everything with fibromyalgia is invisible,” says Shelley Smith, 31, of Houston. “Even people who know me very well cannot tell when I’m in pain or when I’m exhausted. Even when I’m at my worst, and I feel like I’m completely falling apart, I look totally normal.”

About three years ago, after a frustrating medical journey, Smith was diagnosed with Lyme disease,which left her with painful fibromyalgia. Outwardly, she looks perfectly fine, and she doesn’t rely on a cane, wheelchair or other device. “With acquaintances, I introduce my illnesses in a very general way,” Smith says. “If they ask, I say I have issues with chronic pain.” Most people don’t want to hear more, she says.

“A lot of times they think I’m a flake because I’ll commit to doing something, and then it turns out at the very last minute that I’m having a really bad day and I just can’t make it,” Smith says. “So they wonder why I just can’t get it together.”

Smith has two young children, ages 5 and 8. “That’s probably the hardest part for me with having an invisible illness,” she says. Sometimes she needs to turn down playdates. Or she’s sidelined when her kids play soccer and other parents pitch in. “I don’t generally explain my illnesses in that kind of context,” she says. “It can get a little bit too complicated.”

Other situations crop up in the community. “I’ll get asked to do things a lot that I can’t do,” Smith says. “I’ll say no, and I’ll usually get guilted about it. And no matter how many times I try to explain, they just don’t get it.” Smith, who volunteers with the Texas Lyme Disease Association, has posted about being healthy versus being sick on her Chronic Mom blog.

Pain Others Don’t See

Chris Nieto, of Kyle, Texas, tends to ignore the looks he gets when he parks in a handicapped space. His daughter Mia has juvenile rheumatoid arthritis, and a disabled parking placard hangs from the rearview mirror. But 11-year-old Mia doesn’t look disabled as she steps out of the vehicle and walks into a mall. If the pain gets bad enough, however, Mia may have to use a wheelchair, and then people stare at her.

Mia’s elementary school friends know she has a health condition. “What they don’t understand is when one minute she’s running around, and the next she’s sitting out,” Nieto says. “Some friends don’t understand why she gets to use the elevator at school, because it’s just too hard on her ankles to walk up and down the stairs.” There’s some envy, he adds, and sometimes kids will act injured to get the same “privilege.”

The situation is also hard for adult friends to process. “So many people are in shock that she has an autoimmune disease,” Nieto says. “And that it’s really a chronic illness. Because on the outside, she’s very social. She’s very talkative. She’s very funny, friendly, very outgoing. On the outside, she’s just a normal kid with a very booming personality.”

It’s not always in Mia’s best interest to attend family or other get-togethers. “Sometimes I have to make the tough decision, and sometimes my wife has to make the tough decision on what we can participate in and what we can’t,” Nieto says.

No Longer Invisible

Debbie Petrina, 60, of Glendale, Arizona, has never been shy about speaking up about multiple sclerosis. As an MS peer counselor, blogger and author, Petrina is happy to educate the public.

“When I was diagnosed, I was only 25 years old,” Petrina says. “I was using the cane by the time I was 30. The length of time I was able to walk at this point was about 10 or 15 minutes, for maybe a couple blocks’ duration. I needed that [handicapped] space. But people automatically assumed: ‘She’s young, she looks good. It doesn’t look like there’s anything the matter with her – and she’s taking that space.'”

If somebody challenged her, she’d tell them she had MS, although they weren’t always that impressed. “In my early days, people didn’t know what MS was, and they didn’t care,” she says. “They just kept going because they didn’t want to have a confrontation.”

As Petrina’s condition worsened, it became more obvious. “As soon as I started using the cane, when I got out of the car and people saw me with it, they quickly went on their way,” she says.

Today, she drives a car with handicap controls, and carefully transfers out into a wheelchair. When her husband drives, he lifts her from the vehicle into her wheelchair or scooter. “Nobody squawks at me anymore,” she says.

Keep an Open Mind

Instead of jumping to conclusions about someone who could have an invisible illness, Petrina, Nieto and Smith suggest the following:

Reserve judgment. Next time you see someone take the elevator up one floor instead of the stairs, no need to roll your eyes. That person could have joint pain, severe fatigue or a congenital heart condition.

Skip the lecture. If someone is entitled to use a handicapped space but doesn’t look disabled, think before speaking. “It’s not appropriate to berate them for parking in that spot, when you don’t know what’s going on in their life,” Smith says.

Don’t assume. “The best idea is to give people the benefit of a doubt and believe they know what’s wrong with their body,” Smith says. “There are so many people in this country who have chronic pain issues and other invisible illnesses that nobody knows about.”

Respect symptoms. Healthy people often underestimate fatigue. Sitting isn’t always the same as resting, and fatigue isn’t just about needing sleep, Petrina says – it feels more like having the flu.

Offer real help. Smith has close friends who understand what she’s going through. “They’ll say, ‘I know you don’t feel good. What is the one thing I can do to help you right now?’ and I feel comfortable [accepting],” she says. Picking her kids up from school when she can’t drive or doing some housecleaning when needed makes all the difference, she says.

Show empathy. If you have a genuine interest in understanding what someone else is going through, use it as a learning opportunity, Nieto says. “Being empathetic towards people is really helpful,” he says.

Be friendly. Attempt to make some kind of connection, Nieto suggests. “It just tears me up when I see kids in a wheelchair or anything,” he says, and he’ll reach out with a smile or a little joke. “A nice, compassionate smile really goes a long way for anybody.”

If You Have the Hidden Illness

Communicate with care. If it’s within your comfort zone, you may choose to speak up when confronted, Petrina says: “I’m the type of person that would respond and say, “Well, I have multiple sclerosis, and my walking is really limited. Would you like to know more about it?'” But be cautious, she adds. “You have to be careful of your demeanor and the tone that you use, your facial expressions and your body language.”

You have nothing to prove. “People are going to judge you. People are going to give you a hard time,” Smith says. “Educate them as much as you can. But at the end of the day, it’s not your job to prove that you’re sick.”

From a Yellow Canary of the 21st century, living in our disabling biosphere

%d bloggers like this: