What an interesting book this is, and what a challenge to review, given how I came away from it.
Anna Lyndsey’s story is that after decades of normal living, she slowly becomes so sensitive to light — both natural and artificial — that she ends up confined to a completely blacked-out room in the home she shares with her husband. Girl in the Dark focuses mostly on her declining health and the time that she spent at her lowest, while she lived in complete darkness for years. Since publication, Lyndsey’s symptoms have apparently abated somewhat, and she doesn’t require complete darkness for long stretches anymore, but she still takes a lot of precautions and is limited in what she can do outside of her house.
There’s a pretty well-documented bias in healthcare that results in women’s complaints of pain and poor health not being taken as seriously as those of men, resulting in, among other things, longer time to get a diagnosis and inadequate treatment of chronic conditions. Historical diagnoses of “hysteria” and ongoing stereotypes have collectively made women out to be overly dramatic and/or making it up for attention, so there are many cases of women’s conditions being dismissed as “psychosomatic” after only minimal investigation into the cause of symptoms.
So it feels callous, particularly in light of Lyndsey’s own stated vitriol toward this line of thinking, to question how the pathology of Lyndsey’s condition makes any sense, and to have doubts about her explanations for the lack of treatment she’s sought and received. Because, really, not a lot about this story seems to make logical sense. And yet, this was (is) her life, and it also doesn’t make logical sense that any person would consciously choose to put themselves in the dark for years and change their lives to this extent, even if they get a book deal out of it in the end.
Part of the “problem,” as it were, is that Lyndsey’s authorial voice is … very prone to embellishment. If you didn’t know going into this book that it’s a memoir, you could be easily forgiven for mistaking it for fiction at the start. She writes with a flair for the dramatic, showing a strong preference for figurative language and a practiced sense of humor that makes every observation significant and every conversation witty and poignant. In short, she’s not what you expect of an average woman with a mundane-sounding government job, and she’s written her memoir like she’s at least a semi-professional creative writer.
But being a good storyteller doesn’t mean Anna Lyndsey falsified or embellished her medical condition. And yet. Her symptoms as she describes them, and as they were observed by doctors and lay-witnesses, are incongruous with each other and with any known presentation of skin disorders and neurological conditions with skin components. Further, after an experience with one specialist whose prescribed treatment seemed to, according to Lyndsey, lead to the drastic decline in her health that ended up in the dark room, Lyndsey saw no other specialists during the time when she was at her worst. Explaining that she couldn’t go outside and couldn’t get any specialists to come to her home, she was unable to seek treatment even though she wanted to.
On the one hand, see my paragraph about women not being taken seriously. On the other hand, since publication, both doctors and laypeople have questioned the assertion that doctors don’t make house calls, having performed and received them respectively. The author of a thought-provoking New Yorker profile of Lyndsey also spoke to photo-dermatologists for the piece, who confirmed that a patient as unusual as Lyndsey would absolutely be of sufficient medical interest to make extra accommodations for her. How much of Lyndsey’s avoidance of the medical community the understandable result of being treated badly, and how much of it is stubbornness?
Perhaps a big problem, and not just as it regards Lyndsey, is that the term “psychosomatic” has a PR problem. Lots of people believe that a psychosomatic illness is “all in the head” and therefore means that there aren’t actually any symptoms, and that the ill person is just pretending to be in pain. Even if we make the further concession that these people actually believe they are ill and they’re not just making it up, there’s still an implicit downplaying of any psychological illness as being less “real” than one that has its basis in physical biology. But suggesting that Lyndsey’s condition could be psychosomatic doesn’t automatically mean that her pain is less real or severe than the pain of a dermatitis sufferer with a physical origin of symptoms; it just means that the treatment course is different. There’s a danger in calling any unexplained illness psychosomatic and leaving the patient to fend for themselves, but there’s not much harm in addressing a potential psychosomatic component through psychiatric evaluation as a part of an ongoing diagnostic exercise.
I’m a skeptical person, so it was hard not to bring all of this to my reading of Girl in the Dark. On her blog, in a post aptly titled “The Pain of Incredulity,” Lyndsey writes:
For so many years, my situation was so rare, extreme and unusual that when I described it to people, often in an attempt to seek help, the response was usually incredulity. Somebody once said that three of the most powerful words in the language are “I believe you.” Their implied opposite is no less powerful. Repeated over and over again, the incredulity became a sort of psychic flaying, a periodic acid bath on top of the agonising burning of my skin.
I DO believe Lyndsey, but I am also frustrated by her. She’s clearly intelligent, and being her own best advocate, she’s singularly motivated to find an answer and the right treatment for herself. But she is, herself, that sort of person who is dismissive of psychosomatic diagnoses, believing they are fake while her condition is real. As such, she’s been thoroughly unwilling to even consider for a second that psychiatric treatment might help her. She chronicles, both in her book and on her blog, all manner of “alternative” treatments she was willing to try, but never psychiatric therapy? I understand being insulted by a psychosomatic diagnosis with all of the stigma and misinformation around such things, but with as much research as she appears to have done over the years with an open mind to explanations, it seems like she was deliberately avoiding the deep dive into psychosomatic illness. Her unwillingness to interrogate psychology comes across as a major blind spot when she’s otherwise so dedicated to exploring every possible root cause — especially when she ends up drawing conclusions from very shaky interpretations of scientific research.
But she’s getting better, based on her self-administered treatment, so what does it matter what I think I know.