What Diagnostic Odysseys Have in Common
Whether it’s a rare disease or Covid-19, the process of reaching a diagnosis can be fraught. There’s ways to make it better.
When she was in her early 20s, Louise Benge — then Louise Proctor — worked in a small office in Mount Vernon, Kentucky for the state’s department of human resources. When it was time for her daily break, she would walk down a small hill to grab lunch. Though Louise was in otherwise great shape for a woman in her early 20s, the walk up the hill back to her office was hard. It wasn’t that she was out of breath, but her legs ached as she climbed. No matter how many times she made the trip, it never got any easier.
It was soon after her 25th birthday when Louise realized that it wasn’t just walking uphill that was becoming difficult. Anytime she walked long distances, she began to feel excruciating pain running up and down her legs. “I would have to stop and rest and take some deep breaths and then it would kind of go away,” she says. “If I could walk slow it was fine, but if I got in a hurry and was walking fast then it would start again.”
When she felt a sharp pain in her calf, Louise would stop in place, reach down, and start massaging out her muscles. One day, to her horror, her calves felt “as hard as rocks.” It was like she was frozen in place and couldn’t will her legs to keep moving forward without severe pain. Eventually, the sensation would subside and she would continue on her way. But as time went on the feeling only seemed to become more pronounced and more frequent.
The problem was that while she tried to get local doctors to take her condition seriously, Louise was told time and again that it was likely she just needed to walk more. The implication being that her symptoms were due to her own sloth. “I knew something was wrong. I wasn’t imagining it,” she says.
As the years went on, Louise’s four younger siblings also began complaining of similar aches. Her two brothers were feeling pains in their limbs, and her sister Paula — who was initially told she had arthritis in her hands despite testing negative repeatedly for the disease — began getting a similar freezing sensation in her calves. Even though she had been very active in her youth…