“You don’t look sick.”
This is a refrain Carrie Szeles hears a lot. She wants others to know what it’s like to live with CIDP, or chronic inflammatory demyelinating polyneuropathy, an autoimmune disorder that destroys the protective covering of nerves and leads to numbness, loss of balance and nerve pain.
For Carrie, a spunky mother of 5 children and 2 stepchildren, not outwardly looking sick has meant many doctors and medical professionals have turned their backs on her in the battle to understand what is happening in her body.
“Nobody wants to touch you [or take on your case] because they don’t know what’s going on,” said Carrie about her care journey.
Carrie’s first visit with a neurologist was incredibly traumatic.
Convinced that Carrie was faking her symptoms, the neurologist manipulated her cramped foot until she was in tears. He also performed balance tests where he would let her crash to the ground to see if she truly couldn’t instinctively regain balance.
Carrie asked the neurologist to test her peripheral nervous system, as she had a hunch that this could be the issue based on her symptoms. He refused.
“My doctor treated me like I just Googled everything and was one of those who diagnoses themselves. He didn’t realize that I am well-educated and had taken courses that deal with medicine,” she said.
At the end of the visit, the neurologist told her it was all psychological and she must have manifested the symptoms due to trauma from a forgotten rape. It was an inaccurate and inappropriate diagnosis, and it took Carrie several months to come to terms with the physical and emotional abuse that had occurred in that room.
When she went to read the report from her visit, she was shocked: “He literally wrote a report so that no other doctor would touch me until I realized it was all in my head.”
Digging further, she also found ultrasound results that showed two cysts that were potentially cancerous. He had entirely ignored this information. Carrie was outraged.
Pushing for answers, Carrie found new doctors and a neurologist. On December 7, 2018, Carrie discovered one of those cysts was actually cancerous. Just 5 days later, she received her diagnosis of CIDP, which does in fact affect the peripheral nervous system.
She was right all along.
Today, Carrie is still in search of answers. There is no cure for CIDP, and she has many additional symptoms that remain undiagnosed.
Doctors often don’t thoroughly explain her disease and treatment plan, giving her medication with no explanation. At one appointment she was told it was up to her to push for more information and do her own research.
She’s found support in a Facebook group of over 6,300 people with similar symptoms and stories of being ignored by medical professionals. It’s helped her realize, “the most important message is advocating for ourselves. Even when we think we’ve advocated enough, we probably haven’t.”
Carrie never wants other patients to have to go through her experiences with navigating the medical field. By providing her de-identified records to advance research through AllStripes, she can learn more about her own disease, contribute to drug trials and research from home, and allow other CIDP patients to see insights from the research.
“I was dealing with all the issues of being ignored and being told I was crazy. I didn’t want others to keep going through the same thing, so if there was any way I could help, then I definitely wanted to.”