Moving through the pain
Megan Touchstone can no longer dance, but she won’t let pain hold her down.
Megan was only 12 years old when she had her first flare of gastrointestinal symptoms. It took several excruciating months of hospital visits and tests for her doctors to determine the culprit: ulcerative colitis, a chronic, inflammatory bowel disease.
As hard as receiving that diagnosis was, it was only the beginning.
A long road
“I watch her go through things all the time that I just wish I could take from her,” says her mom, Shelby. “It’s been a long road.”
The ulcerative colitis symptoms were challenging, but Megan kept her head up. She continued life as normal, including a rigorous schedule of dance lessons four days a week.
“I loved doing all sorts of dance,” says Megan. “Hip-hop, ballet, breakdance, tap-dance, contemporary, jazz.”
She was just beginning infusion treatments for the ulcerative colitis when she started experiencing more unusual symptoms: pain in her feet and ankles, especially during dance.
“At first, we thought, ‘Maybe you have to slow down, because you’re doing too much,’” says Shelby. “But it got worse and worse and worse.”
Megan’s parents knew enough to take her pain seriously. They took Megan to a rheumatologist, who suggested genetic testing. The geneticist ultimately used a Beighton Score to diagnose Megan, delivering another devastating blow: in addition to ulcerative colitis, Megan had hypermobile-type Ehlers-Danlos syndrome, an inherited disorder that causes severe joint and muscle pain. (Hypermobility does not show up in DNA.) Her doctors also diagnosed her with fibromyalgia, a painful musculoskeletal condition.
But even though these three diagnoses explained many of Megan’s symptoms, Shelby felt the doctors were missing something. “Besides the fibro and the Ehlers-Danlos, there was something else going on,” says Shelby. “It was causing her autonomic nervous system to be all messed up—and a lot of other issues.”
It wasn’t easy to get clinicians to believe her. Some doctors blamed Megan’s pain on anxiety; others even insinuated she was lazy. “She’s had ones who say, ‘Oh, she just needs to be a little bit more active,’” says Shelby. “It’s like, are you serious? When this happened, she had won a presidential fitness award; she danced four days a week.”
Shelby pushed until they found a doctor who wanted to check for a disease called small-fiber polyneuropathy, which causes painful damage to nerves all over the body, including the skin and organs. (The difference between neuropathy and polyneuropathy is that polyneuropathy is widespread throughout the body.)
Sure enough, Megan’s results came back positive.
Megan and her mom agree that of all her diagnoses, the small-fiber neuropathy is the most challenging. Shelby describes it like having a pinched nerve and stabbing knife pains in your back. “Imagine having that all through your body. That’s the kind of pain she deals with on a daily basis.”
“There are no days that I’m ever pain-free,” adds Megan. “The good days are days the pain is manageable.” The pain and dysautonomia is so extreme, Megan at one point had to rely on a wheelchair to get around—her heart rate and blood pressure were dangerously erratic.
“With physical therapy and so much dedication on her part—the kid is such an inspiration, she’s such a fighter—she’s ended up where she can use a walker with a bench,” says Shelby. She can only walk for a few minutes, though, before the pain starts up in her legs. And, because her conditions cause dysautonomia, she also gets dizzy, short of breath, and has blurred vision. But seemingly small triumphs matter so much when dealing with pain. “She’s at least walking a little now, where she couldn’t do that at all before,” says Shelby.
No matter how positive their outlook, it’s hard to ignore the heartache of chronic illness. “It’s been a total life-changer for Megan,” says Shelby. Megan has had to give up so many things, like dancing and musical theatre.
Missing out on the activities has impacted her relationships, too. “I try to help people understand what I’m going through,” says Megan. “It’s just that, some people, you know, they get scared. They just don’t understand, as much as you try to explain it.”
‘I’d rather look on the bright side.’
“Through it all, she keeps her head up,” says Shelby.
For one, Megan says, her health conditions have helped her figure out who her true friends are. “They are the ones that stick by me no matter what. Even if they don’t completely understand, they’re still there—they still stand by me and are still nice. They’ll still try to invite me to things.”
One example of true friendship? Several friends who help carry her books during school. “There’s this one girl and a couple other friends who carry my stuff for me, because I can’t with my back and my walker.”
And, despite her absences at school, Megan has remained a straight-A student. She’s in honors classes and is even a year ahead in math. “They wanted her to go to home-bound schooling,” says Shelby. “She refused. She said, ‘I’m going to go as long as I can, until I collapse on the floor! I’m going.’”
As for her hobbies, Megan is not focused on what she can’t do. She’s focused on what she can. “Having to give up dance temporarily—instead of getting so depressed about it and acting like it’s the end of the world—instead, I’ve decided to do other things that I can do,” she says. “Like I’ve gotten into creating computer animations. I make cartoons. I’m also planning on making a robot soon. I’m saving up money for parts.”
She knows that a positive attitude is essential to thriving with pain. “It’s not going to change anything if I just sit down and feel depressed about it,” says Megan. “If anything, it’s going to make me feel worse. I’d rather look on the bright side of things. If I can’t do one thing, I might as well do another.”
Finding support—and hope
How does she stay so positive and determined? In addition to the steadfast love of her mom, Megan gets a lot of support from her dad, Russell, and older brother, Brandon.
“I help them and they help me,” says Megan. “It’s like we bounce off each other. When they’re feeling bad, I’ll help them. And when I’m not doing well—as positive I try to be, I can’t be perfectly positive 24/7, it’s just impossible—but when I’m not able to be my normal, happy, joyful self, they’re there to help me too.”
She also loves spending time with her two little cousins, ages 4 and 7, who come over to the house and try to distract her from the discomfort. Her dog, Spike, also provides comfort and distraction. “They help keep my spirits up,” says Megan.
Megan’s parents, in turn, feel fortunate to have a very supportive extended family. But they’ve also gotten a lot of help through online support groups. “I’ve found a lot of helpful support online, where I can talk to parents who are going through similar situations,” says Shelby.
Even if you have loved ones who care, Shelby thinks it’s essential to connect with people who are going through the same things. “Unless you live with this pain, and see it firsthand, and see what it can do to your loved ones—they can give you so much support—but they can’t completely understand. They try, and it’s not that they don’t try. It’s just different.”
Shelby’s trying to pay it forward: She recently started a Facebook group for parents of children with small-fiber neuropathy. She only started it a month ago, and already has 20 members.
A future filled with possibilities
Megan and her family also refuse to give up hope on the possibility of treatments. Megan does regular physical therapy, eats healthy, exercises when she can, gets massages, and takes medications to manage certain symptoms.
The family was excited about intravenous immunogloblin (IVIg), since it’s helping many, but unfortunately due to side effects, it didn’t work for Megan. Still, her parents are not giving up hope of finding a cure.
Whatever happens, it’s clear that Megan is strong enough, determined enough, and brave enough to see it through.
“I think this is part of God’s plan to make me stronger because he has something special in store for me,” says Megan. “With some of the things I have experienced and the severe pain I have endured, I figure if I got through that, I can get through anything.”
Dysautonomia Connection: facebook.com/groups/thedysautonomiaconnection
Dysautonomia International: dysautonomiainternational.com
Dysautonomia Youth Network of America, Inc.: dynainc.org
The Ehlers-Danlos Society: ehlers-danlos.com
Parents of Children with Crohn’s and Colitis: bit.ly/ParentsCrohnsColitis
Parents of Children with Small Fiber Neuropathy/Polyneuropathy: bit.ly/ParentsNeuropathy