Laurie Edwards has a chronic respiratory disease so rare that she’s met only one other person who has it — and that was through the Internet. In and out of hospitals her entire life, Edwards, now 32, wasn’t accurately diagnosed until she was 23. Before they correctly identified her condition — primary ciliary dyskinesia (PCD), which is similar in some ways to cystic fibrosis — doctors thought she might be an atypical asthma patient, that she wasn’t taking her medications correctly, or that her symptoms were perhaps brought on by stress.
When the correct diagnosis finally came, the news was life-changing.
“First of all, emotionally, it was a sense of validation,” she tells Fresh Air‘s Terry Gross. But more than that, Edwards says that knowing what was wrong allowed her to focus her energies on more effective treatment and prevention.
Edwards isn’t alone in having a rare or difficult-to-diagnose chronic illness. This is an experience familiar to many Americans who suffer from chronic illness, including people with autoimmune diseases and people with chronic pain and fatigue who can face difficulty getting a diagnosis — and skepticism when they do.
Edwards, whose new book is called In the Kingdom of the Sick, is also interested in gender biases when it comes to how men and women experience — and are treated for — pain. Citing studies that show women experience a disproportionate amount of pain and pain conditions, Edwards says they’re two-and-a-half times more likely to experience rheumatoid arthritis, nine times more likely to experience fibromyalgia, four times more likely to experience chronic fatigue syndrome and three times more likely to experience autoimmune disease. Yet women complaining of chronic pain and fatigue symptoms are not always taken seriously. Edwards thinks this is the product of historical attitudes toward women, pain and illness.
“There is a long-standing connection and perhaps bias about patients who are female,” she says. “[I]t’s very easy to say, ‘Oh, well, she’s just hormonal, she’s emotional,’ and that was sort of underlying the [historical] nervous exhaustion diagnosis, and it’s certainly a big part of the attitudes towards [women] with these conditions now. … [I]t’s just an iteration of a long-standing attitude.”
On learning to prioritize
“One thing that growing up with chronic illness and sort of never knowing what it is to be healthy has shown me is how to prioritize. You know, you have limited energy. Sometimes you have more time that you need to spend on managing your health on a daily basis, a monthly basis, so you begin to sort of make the choices about what is the most important thing and what things are going to get your best time and energy.”
On cures versus everyday needs
“With chronic illness, you know, there are no cures, and so while it’s wonderful to push for the cure and to push for research, we also need to make sure that we’re not doing that at the expense of the everyday needs of patients who are already living with disease. So for me, cure is great, [but] it’s this idea that’s very distant on the horizon. It’s something that certainly all patients aspire to, but it’s not something I think about very often. I want to get through the day. I want to make sure that I get my chest physiotherapy covered from my insurance company. I want to make sure that I grade my students’ papers, and that I can run around with my little girl.”
On trying to describe pain on a 1 to 10 scale, as often requested by doctors’ offices
“Pain is inherently subjective. One person’s ‘4’ could be another person’s ‘10’ and vice versa, and I think it’s especially tricky when you’re someone who has lived with chronic pain for so long and is used to pain, because maybe what registers to you as significant would be crushing to somebody else if they’re not used to it. So I think the inherent subjectivity of pain, as well as the inherent subjectivity of the health care professional, who is then interpreting your perception of pain, makes it incredibly challenging.”
On the importance of the Internet and social media to people with chronic illness
“We can look at medications, and we can look at improved diagnostics, and we can look at refinement in surgeries as all these wonderful technological breakthroughs, but for the chronic illness community, the Internet and social media are what I call in the book ‘Health 2.0,’ which are these platforms that allow patients to connect to each other, are incredibly life-changing. Absolutely.
“So for me, when I was first diagnosed with PCD several years ago, you know, I didn’t know much about it. Everything was new to me in terms of the new treatments I would be getting, and I found a disease group — a Yahoo group — and, you know, there are only 400 Americans who have been appropriately identified with what I have — with PCD. Up to 25,000 people are suspected to have it, but because it’s so hard to diagnose, they haven’t yet been caught.
“And so I found this group, and there are people who are talking about what I was thinking about. And there was this wonderful woman I connected with in Ireland, and she happened to be visiting Boston a couple years ago, and … she said, ‘Hey, let’s meet,’ and, you know, it was the first time in my life that I sat down next to somebody with what I had and, you know, who didn’t sort of give me the evil eye when I coughed a lot and didn’t worry that she was going to catch something. … [I]t was through the Internet that that was ever possible, and that can be incredibly valuable to patients.”
On why it worked well for her to be upfront about her conditions when she met her husband
“Even though he didn’t know a ton about my conditions themselves, he could look into it. He knew right away the unique circumstances of my life. I didn’t have to hide things. Just a couple months into our dating, I had to have a bronchoscopy just to take some tissue from my lungs, and I went under anesthesia. And I was recovering from that and coming home, and I had all these different tubes and wires that they had to leave to test something else, you know. It was just very, very present, very there, and he was able to support me and be there for me, and he came from the hospital with me. And very quickly into our relationship, he asked if he could learn how to perform chest PT for me, so it allowed him to be a part of things, and it allowed illness to be just something that was a part of our relationship. It wasn’t something that defined it, but it also wasn’t something that I was hiding and putting up these barriers about, and that really allowed us to approach it as a team, and I think that was a lot better for both of us.”