How Invisible Disabilities Taught Me the Importance of Being My Own Advocate
Key takeaways:
After years of not knowing what was wrong with her, Christie Cox got a series of “alphabet soup” diagnoses — the kinds of conditions many people have never heard of.
For a while, she juggled corporate life with a set of hidden disabilities. Gradually, she learned to slow down and handle her chronic, invisible illnesses as best she could.
She says her biggest lesson was learning to advocate for herself. Here’s how she did it.
Christie Cox, 54, was living the life of a busy Washington, D.C. area working parent — juggling long commutes and a high-pressure job in corporate communications. On weekends, she’d often travel to her child’s competitive sports tournaments.
But quietly, she was dealing with a set of invisible illnesses that were obscure enough that they long went undiagnosed.
Christie only knew she had spent frustrating and demoralizing years trying to figure out what was causing her mysterious symptoms. There was fatigue, hair loss, hives, insomnia, and pain. In time, it escalated into elevated heart rates and brain fog. She saw doctor after doctor.
“I couldn’t get anybody to help me understand what was happening. I got a lot of misdiagnoses,” she says, including women’s issues and depression.
But she didn’t give up and learned to become her own advocate. Over the years, Christie found community and has turned to helping others grappling with silent disability or illness, whose challenges she learned about firsthand.
Finding more than one diagnosis
Initially, Christie had been diagnosed with Hashimoto’s disease, an autoimmune thyroid condition. She was prescribed a standard synthetic thyroid hormone replacement medication. After nearly a year, in the early 2000s just after her daughter was born, she began to feel better and focused on her family and her career.
But other unrelated symptoms persisted, which she thought might be something else. And as the years went by, they gradually seemed to get worse.
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Then, in 2017, she had a pivotal accident.
Christie was driving to work, battling Washington, D.C.’s notorious traffic, when she began to feel like she might fall asleep. At first, she admonished herself.
“Gosh, get your act together. Go to bed earlier,” she thought to herself. She didn’t know it at the time, but she was passing out, not falling asleep.
She was unaware that she was having repeated syncope events — or fainting. And one day when traffic ahead of her suddenly stopped, she slammed into the car in front of her when she momentarily passed out driving. She wasn’t seriously hurt, but she went to a physical therapist to examine her neck for possible whiplash.
“Within a couple of minutes, that technician said, ‘I need to get my manager over here,’” she recalls. They had discovered the first hints of instability in her neck that might be causing other problems. They suggested she immediately go to the emergency room, where she was told she was fine and to go home.
But a diagnosis eluded her. Christie kept researching on her own, trying to push past dismissals by physicians. Later that year, through diligent research and relatives who knew about potential genetic disorders in her bloodline, a geneticist expert in another state finally diagnosed her with Ehlers-Danlos syndrome (EDS), a disorder that affects connective tissues such as joints and blood vessel walls.
The same doctor spotted other heart issues and urged her to go see a cardiologist. There, she was diagnosed with POTS, or postural orthostatic tachycardia syndrome. It’s a disorder of the autonomic nervous system and a type of dysautonomia that was causing her to pass out because of lower blood flow to her brain. There’s no cure, but treatment tends to focus on using diet and exercise to reduce symptoms.
A year later, an expert neurosurgeon diagnosed Christie with craniocervical instability (CCI), a common symptom seen in hypermobile EDS where joints aren’t being held together properly by muscles and are not stabilized. Symptoms can include neck and shoulder “coat hanger pain,” headaches, altered autonomic function, weakness, and trouble concentrating.
It was a frightening “alphabet soup” of diagnoses, Christie says. But she finally had names for what was wrong.
Still, treating all those conditions was a daunting challenge.
Getting people to understand obscure conditions was tough, she says. And in her eyes, those conditions had alienated her from family and friends she felt had avoided her because they viewed her as an attention-seeker with an incessant focus on vague illnesses that weren’t visible to anyone else.
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Little-known medical conditions like postural orthostatic tachycardia syndrome (POTS) helped inspire this patient to become a doctor.
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Finding surgical help, but challenges remain
By 2019, Christie realized she couldn’t keep up with her job. She tried working from home but realized that wasn’t feasible, either. She had to go on disability.
“I can’t do this. I can’t cognitively function to the necessary level for work,” she recalls thinking. “I’m scared to be in the car and drive to work.”
By then, her daughter was nearing graduation from high school. But without her income, the family needed to move out of D.C. to nearby Richmond, Virginia, leaving her daughter for a few weeks with family to finish school.
Christie had been struggling to keep up with her busy life, trying to manage her POTS symptoms. But she was still dealing with body pain, speech problems, trouble walking, and cognitive issues that could make finishing sentences difficult. “I was pretty darn scared about it,” she says.
In the spring of 2021, she and her husband went to Charleston, South Carolina, where a neurosurgeon fused a section of her cervical spine to help her CCI and EDS. The surgery made a big difference.
“I’m still not 100%,” she says. “But I can go out for a walk now and just stand at the stove and cook a meal a couple of nights a week again. I can read a book.”
Through her relentless self-research that helped her gain her diagnosis, she also found an online community that helped her cope with her conditions. Others, she found, had gone through the same struggles.
“It’s like I am not alone,” she says.
Christie continued to try to better understand what happened and what she could have done differently. She’s since written a book to help others navigate invisible illnesses like EDS and share what she learned about aspects of managing chronic illness and the emotional impact it has on your life.
Ultimately, she says, her biggest lesson and advice for others is to become your own advocate.
Then about 2 years ago, some of her symptoms resurfaced. She discovered a problem with her surgery where the fusion needed to be corrected. She’s at that one-year anniversary now of her corrective surgery.
But now she’s no longer a mom and worker “going 1,000 miles an hour,” she says. So along with managing her condition, she’s also focusing on restoring the family and other ties that her invisible illnesses frayed.
“So that’s where I am today, trying to repair these relationships and better manage my invisible disability,” she says.
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