In her new novel, The Kingdom of The Sick: A Social History of Chronic Sickness in America, 32-year-old Laurie Edwards talks about gender biases when it comes to how men and women experience and are treated for pain.
It wasn't until she was 23 years old that Laurie Edwards was correctly diagnosed with primary ciliary dyskinesia (PCD). This rare disease is difficult to diagnose and the 32-year-old American reveals that she has met only one other person with the same illness and that also on the Internet. Before she was correctly diagnosed, doctors thought Edwards was a typical asthma patient who was not taking her medicines properly or that her symptoms were perhaps brought on by stress.
In her new novel ,"In the Kingdom of the Sick," Edwards talks about gender biases when it comes to how men and women experience and are treated for pain. Edwards reveals that though learning about her illness was life changing, it gave her the opportunity to focus on the right and better treatments.
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 for 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."