![\"Cover](\"https:\/\/disabilityinkidlit.com\/test\/wp-content\/uploads\/dead-girls-society-300x453.jpg\")
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\n\t\t\t\tBUY ON BOOKSHOP<\/span>\n\t\t\t\tBOOKSHOP<\/span>\n\t\t\t<\/div>\n\t\t\n\t\t\t\n\t\t\t\n\t\t\t\t& support independent bookstores\n\t\t\t<\/span>\n\t\t\t\t<\/a>\n\t<\/article> \n\n\t<\/center><\/div>Cystic fibrosis is a relatively rare disease, and even rarer are books that deal with it \u2014 particularly books in which the main character has CF and is still alive by the end. I was excited to get a chance to review an early copy of Dead Girls Society<\/em>, and loved the idea of a girl with CF getting the chance to star in an action-packed adventure of a novel. In many ways, Dead Girls Society<\/em> lived up to my hopes \u2014 it depicts some fairly realistic emotions that many teens with serious illness experience. The details of the disease, however, were much more of a mixed bag.<\/p>\nKrys got many details right in her portrayal of cystic fibrosis: The medications Hope takes throughout the book are real medications that most CF patients take; in addition, Krys did a fantastic job showing the frustrating and oft-embarrassing way that mucus and chest congestion are an intrinsic part of a CF patient\u2019s life. (Every time Hope had to figure out a way to discreetly cough and spit in front of her friends, I cheered a little inside \u2014 it\u2019s so unusual to find a case of CF in a book that tackles the less-savory aspects of the disease!)<\/p>\n
There were many more small things, however, that didn\u2019t really jive with either my own experience with CF or the things I\u2019ve seen in my many years of interaction with the CF community. While any one of them taken by itself wouldn\u2019t have been a big deal, the combination of all of them together painted a portrait of cystic fibrosis that greatly stretched my credulity. Many of the specifics about types of breathing treatments, one of the most important aspects of life with CF, were incorrect, and some of them were pushing the line into problematic tropes. For instance, while many CF patients (including me!) do carry rescue inhalers for situations when we\u2019re out and about and run into trouble, I felt that by the end Hope\u2019s inhaler had become a lung disease stereotype \u2014 the common trope of the asthmatic whose inhaler really stands as a symbol for anxiety, and who is able to rise above her need for it by the end as her confidence increases. Since anxiety is a fairly rare trigger for asthma, and an even rarer trigger for a progressive obstructive airway disease like CF, Hope\u2019s ability to get by okay without her inhaler by the end when she\u2019d been so dependent on it to start with struck me as unlikely.<\/p>\n
By far the biggest problem I had with the CF portrayal was the fact that her mother was so overprotective as to become unrealistic, and the inconsistent way in which Hope\u2019s level of health was described. At the beginning of the book, Hope has been confined to bed for months by her overprotective mother. While this is somewhat realistic \u2014 many parents of CF children are, understandably, highly protective \u2014 the length to which Hope\u2019s mother went to shield her from everything was fairly unlikely. Cardio exercise is a crucial component in CF care, and no CF specialist in their right mind would either be okay with a parent preventing their CF child from exercising, or recommend a lack of exercise themselves.<\/p>\n
Additionally, Hope\u2019s mother makes several references to the fact that Hope will likely not live to adulthood. While this was definitely true of earlier generations, the life expectancy for teenagers Hope\u2019s age (born around the year 2000) is mid- to late thirties if not even later. There\u2019s also enough variability in cystic fibrosis that it\u2019s very unlikely that a patient Hope\u2019s age would be told she wouldn\u2019t live to get married or have any kind of an adult life, as Hope is reminded repeatedly, unless they were already end-stage and unable to function at anything near a normal level. (Even then, most end-stage cystic fibrosis patients are eligible for life-lengthening double lung transplants.)<\/p>\n
Several references are made to Hope having been extremely sick in the recent past \u2014 apparently to the point that she nearly died. At one point she says something about having just gotten off of supplemental oxygen, a treatment that\u2019s used only in very severe illness and not needed in all cases of CF-related pneumonia.<\/p>\n
On the other hand, Hope seems to treat each incident of coughing throughout the book as unusual, whereas most CF patients have a continual cough throughout the day, even when pretty healthy. Several times, Hope refers to a coughing attack as a \u201cflare-up,\u201d which is a term a CF patient would almost never use. (If used at all, it would be in reference to what is more usually called a CF exacerbation \u2014 essentially, a case of pneumonia.) Hope also has a fairly normal range of activity; she often gets tired when she\u2019s doing something that\u2019s very physical, but she\u2019s still able to do things like walking up and down stairs, and when her breathing grows labored it\u2019s typically more a function of anxiety and fear than a true inability to do normal tasks. For most patients recovering from an illness as serious as Hope\u2019s supposedly was, regular everyday things like loading or unloading the dishwasher, walking up the stairs, or getting through a whole day at school can be prohibitively hard.<\/p>\n
The thing that Dead Girls Society<\/em> did\u00a0very<\/em>\u00a0well was offer a nuanced and realistic portrait of what it\u2019s like to be a teen (or an adult!) with a serious illness, and the continual agonizing and second-guessing that comes of trying to balance being careful enough with your activity level to stay well and hopefully lengthen your overall life expectancy, while still being able to lead a life that feels rewarding and fulfilling. I empathized deeply with Hope\u2019s frustration at her own limited life, as well as with the constant weighing-of-choices she does throughout the book to try to preserve her decreasing health. Even as an adult, reading such frank discussions of the price that those of us with serious illness can pay for trying to have anything resembling a \u201cnormal\u201d life was cathartic. I can only imagine that as a teen, struggling to come to grips with my disease and its effects on my life, it would have been even more so.<\/p>\n As a reader, I thoroughly enjoyed Dead Girls Society<\/em>. As a CF patient, I appreciated the honesty and authenticity with which the emotional aspects of serious illness were written; the actual details of day-to-day life with cystic fibrosis, however, were a mixed bag.<\/p>\n","protected":false},"excerpt":{"rendered":" I appreciated the honesty and authenticity with which the emotional aspects of serious illness were written; the actual details of day-to-day life with cystic fibrosis, however, were a mixed bag.<\/p>\n","protected":false},"author":114,"featured_media":4090,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_generate-full-width-content":"","kt_blocks_editor_width":""},"categories":[62],"tags":[312],"genre":[5,124],"age_category":[8],"disability":[34,313],"_links":{"self":[{"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/posts\/3952"}],"collection":[{"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/users\/114"}],"replies":[{"embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/comments?post=3952"}],"version-history":[{"count":2,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/posts\/3952\/revisions"}],"predecessor-version":[{"id":6954,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/posts\/3952\/revisions\/6954"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/media\/4090"}],"wp:attachment":[{"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/media?parent=3952"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/categories?post=3952"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/tags?post=3952"},{"taxonomy":"genre","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/genre?post=3952"},{"taxonomy":"age_category","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/age_category?post=3952"},{"taxonomy":"disability","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/disability?post=3952"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}