Fighting for fair treatment, education, and respect
Margaret G. Rozich—Maggie, to friends and family—has lived with pain since birth.
Her mom, Debbie, only knew she was pregnant for about a month before she gave birth to Maggie three months early. Days before giving birth, Debbie had watched a marathon of a TV show about high-risk births and was thankful during delivery that she had; many of the things she watched on TV happened to her and Maggie.
Maggie was diagnosed right away with cerebral palsy (CP), which doctors knew would cause the infant pain to some degree throughout her life. But her pain didn’t become a serious issue until freshman year of high school.
Newer diagnoses complicated Maggie’s pain
In junior high school, Maggie contracted mononucleosis, commonly caused by the Epstein-Barr virus. Soon after, she fell while on an eighth-grade school trip to Washington, D.C., breaking her tailbone. She struggled through the end of that school year and spent the summer trying to heal. She thought she had recovered, but when she began freshman year, “my schedule was all over the place, and I could not keep up at all,” she says. “I was tired, and I was in lots of pain all the time. I also went to a new school that was much bigger, with four floors, and I noticed I was really struggling.”
She started seeking treatment and an explanation for her pain and fatigue. Doctors diagnosed her with spina bifida occulta, which can exacerbate pain, as well as degenerative disc disease, mild scoliosis, and several bulging discs. As Maggie’s overall health declined, Debbie and her husband, Steve, sought more options for care.
One thing is consistent: The need for advocacy
The thread that weaves through Maggie’s entire story is one of advocacy: She and her parents have fought each step of the way to ensure Maggie received the things she deserved, like medical treatments, education, and acceptance.
Maggie tried seeking help at a rehabilitation hospital near her hometown of Alsip, Ill., but felt that her symptoms were ignored—and that she was disrespected. “Multiple doctors there told me it was all in my head,” she says. “They thought my pain was psychosomatic. They were only treating me for back pain, but when I told them that when I stood up, I would get dizzy or feel exhausted, or if their treatments didn’t help my pain, they would say, ‘You shouldn’t be having all these symptoms.’”
Debbie was more than frustrated. “None of the doctors we saw wanted to prescribe pain meds to her, even though she’s been dealing with this for years, and over-the-counter medications didn’t even touch her pain.”
Again, they searched for better treatment. A pediatric neurologist added a diagnosis of postural orthostatic tachycardia syndrome (POTS). A trip to Mayo Clinic in 2017 added another diagnosis, orthostatic intolerance—an explanation for so many of the symptoms Maggie had been experiencing for so long. On Mayo’s recommendation, Maggie saw a rheumatologist back at home, who eventually added a diagnosis of fibromyalgia. Finally, Maggie was being taken seriously.
‘It starts with doctors.’
But even with her rheumatologist, who confirmed so much of what Maggie had been living with for years, things were a struggle. “She prescribed a wheelchair for use only at school, to help me get to my classes,” says Maggie, “but she was really hesitant.”
Debbie continues: “She didn’t want Maggie to become deconditioned, but the doctor didn’t take into account all the other health issues Maggie lives with and how they affect each other. It seemed like the only reason she prescribed it was because we told her Maggie had fallen down in the middle of a busy street in our neighborhood, in front of oncoming traffic.”
Debbie thinks that the invisible nature of so many of Maggie’s conditions causes doctors and others to discount her symptoms. Maggie says that the repeated disrespect she’s experienced from doctors has taught her to answer “I’m fine” whenever someone asks how she’s doing. “Even if I feel horrible, my impulse is always to say, ‘I’m fine,’ because I don’t want to go through the trouble of explaining everything. When you’re chronically ill, you get really good at faking it,” she says.
“A lot of it starts with doctors,” Maggie continues. “If they don’t believe us, how is anybody else going to?”
Why is elevator access so hard?
Maggie has had similar challenges at school. While her very early years yielded support from educators, high school brought a huge change. “Maggie missed over 60 days of her freshman, junior, and senior years, yet the school didn’t offer a tutor until the very end, when it was too late,” says Debbie. “Her daily high pain levels meant her freshman and sophomore years were the worst; on several occasions, they tried to make her serve after-school or in-school detentions due to chronic absences even though it wasn’t physically possible.”
Maggie also struggled to secure access to elevator use at school to accommodate her wheelchair. They gave her the runaround, sending her from person to person to secure access; only one administrator seemed to care about making it happen, and even she wasn’t able to secure access. Eventually, Maggie gave up on the idea of using the wheelchair at school.
“Some of my teachers didn’t even read my IEP,” says Maggie. “One teacher burst into tears during a meeting, because administrators had told her about my broken tailbone and nothing else—she had no idea. She felt so bad because she had been forcing me to do all this stuff that just wasn’t physically possible.”
Maggie knows there are some people in the education system who truly do care—she has met a few here and there—but overall, she feels like when she needed help the most, the educational system let her down.
“She toughed it out, and ended up being in even more pain and missing more school,” says Debbie. “She graduated on time from high school, but only just barely.”
Planning for her future
Maggie plans to go to college someday but thinks she might take a little time off before trying to navigate another educational institution. She has one service dog she’s starting to retire (Murphy), and one she’s training (Bella), and wants to make sure she’s fully prepared to show up to college with the most and best resources available—including a service dog that can help with all of her chronic conditions.
Maggie works with some service dog training organizations, and also has studied how to train her dogs from other trainers and even a neighbor who’s a personal protection dog trainer. “We’re getting help; you can’t do it all yourself,” she says. She loves being involved in the process. “A lot of programs don’t cross-train dogs, so a lot of people with multiple illnesses train dogs themselves.”
She’s interested in studying American Sign Language (ASL) to become an interpreter, and even though she hates needles, she plans to study phlebotomy. Both careers are possible for people who use a wheelchair, and both can be done by being part of a “float pool”—which means that day to day, Maggie could choose to take a shift, or not, depending on her health.
Despite facing many uphill battles, Maggie is still hopeful and determined. “Maggie has surrounded herself with a new group of friends who are chronically ill, service dog handlers, or both, and they have been a great support system for her,” says Debbie. With the love and support of her friends and family, Maggie is ready to see what life holds for her in the next chapter.
Dysautonomia International: dysautonomiainternational.org
The Mighty: themighty.com
Low Dose Naltrexone for Chronic Illness & Infections: bit.ly/ldn4chronic