Ellen Desmond speaks with Karen Havelin, the author of Please Read This Leaflet Carefully about fiction, chronic illness, and female pain.
Q: How are you feeling about having Please Read This Leaflet Carefully [PRTLC] out in the world?
A: I am thrilled that this book is out there, and that it’s reaching people. Despite all the work, stress and difficulties that come with putting out a book, I find life easier since.
Q: Why did you decide to highlight the issue of chronic female pain and endometriosis through fiction rather than non-fiction?
A: I love fiction, and I’ve been inhaling novels since I could read, day and night. I think there’s a special power to fiction, to stories, and that it’s very important to see yourself reflected. I wanted to expand literature a little bit by writing about something in my own life that I hadn’t seen reflected anywhere.
Q: Why did you choose for the narrative structure of PRTLC to go backwards in time?
A: I wanted to subvert the way we usually read about illness. The way most stories brush conveniently past the actual experience of being ill. It tends to get solved with a quick montage of brave smiles, hugs, and hard work. And then it’s over and everyone learned something valuable that they can take with them into the actual story. Because the story of becoming ill and staying that way is never the story being told. Chronic illness is a repeated experience, not a neat story with a clear beginning and ending, where you defeat your enemies, and achieve salvation once and for all. You have to relearn the lessons and it looks different at different times in your life.
Q: The narrator of PRTLC is studying for a Master’s in Creative Writing while balancing chronic pain and illness. In your experience, do you think there are adequate supports in place at universities and colleges for students with invisible illnesses?
A: In general, I don’t think there’s adequate supports for students with disabilities. I hope I’m wrong. My own experience has been very mixed. Part of the issue is knowing that you have a right to ask for help and knowing who to ask. Invisible illnesses have their own types of challenges. It can be very hard to get what you want and need if you first have to spend all your energy convincing people that there is indeed a problem. I think typically people with invisible issues have to spend a lot of their energy worrying about how they are perceived, and about whether they will lose the help they need if people misunderstand.
Q: A moment that really stands out in the novel is protagonist Laura’s advice on how to get a doctor to take you seriously. Amongst other things, she says: ‘If you’re too hysterical, they write you off. If you’re too calm, they do the same.’ Why did you give her these words? Has there been any response to these lines?
A: I’ve heard from a lot of people who recognize the situation, who have the same bitterly acquired experience. They all happened to be female patients, ha ha…
Q: Your novel is international both in its narrator and now in availability. Do you think the attitude towards chronic pain and invisible illnesses from doctors captured within it is also reflective of a widespread/international issue?
A: Unfortunately, I don’t think there’s any doubt about that. It also tangles up into gender, race, class, money, education. Access to healthcare is not something we can take for granted unfortunately, and a lot of places people are fighting even for basic rights to medical help. I think these things are often worse in countries with less equality, more patriarchal power dynamics.
“We all need each other, we are all interconnected, we all need help and it is allowed.”
Q: A part of the book that really struck me was when Laura is asked for help from a deaf man who is struggling to get medication to help his dog. The idea of how much we rely on others for help, even when we really don’t want to rely on them, is a recurring theme in the book. Do you think those in need often end up relying on others who are also in need, because they are most likely to understand?
A: I think that you are definitely onto something. Sometimes people are shocked when they themselves suddenly need help, and realise that it’s been like that for everyone else, that whole time. Everyone gets that cold shower of a wakeup call at some point in their lives, but some people get it pretty late in life. It’s a bit like those studies that prove that having a lot of money reduces empathy in people.
I think this is something we are digesting as a culture now, how a society based on that the individual must be smart, strong, independent, amass as much money and stuff as possible and rely only on himself is not really something we can live with. It doesn’t lead to good things in the world. It doesn’t lead to kindness, it doesn’t lead to understanding and empathy, or long term sustainability. The truth is we all need each other, we are all interconnected, we all need help and it is allowed.
Q: Do you think books are the best way we can put ourselves in other people’s shoes? What are some other ways we can further understanding about chronic pain?
A: I think books are important, I think TV and movies are important too. I feel like things are shifting and people are starting to understand more and more that people have very different circumstances and struggles. So we need more conversations and stories, new stories, told by different kinds of people.
Q: In PRTLC, Laura’s physical health obviously takes a toll on her mental health. Historically, female pain and female mental illness are often written off and disregarded in the same way. Women are seen as ‘hysterical’ or ‘over-reacting’. Do you think we have made any strides in busting this social myth about women’s illnesses?
A: I think we have made huge strides if you look at things were 100 years ago. Birth control, abortion rights, patient rights etc. There’s just a long way to go still. Rights have been won, but some of the old views are still there in the air we breathe. The most dangerous parts are the ones we don’t even realise we have. The way it just seems natural and right that certain health issues are more highly prioritized and others are shameful to even talk about. The way for example endometriosis is as common as diabetes, but is grotesquely under-researched even though there aren’t really any great treatments available. The way people are sometimes so comfortable offering suggestions, as if not being able to heal yourself with positive thinking is a moral failing.
Q: Your protagonist’s bisexuality/non-monosexuality is lightly brushed upon in this novel, though she seems to have largely buried it in her past. Why do you think this is?
A: I actually wouldn’t say it’s lightly brushed on or buried. Laura is queer, and happens to have dated a few men at the start (ending) of the novel. For her, being sick is also kind of a way of being queer. In the sense of it giving her a slanted perspective, a way to interpret her own life as someone on the outside. This point of view that helps her penetrate the veil of wellness/normalcy. Of taking an honest look at her life to figure out what is actually useful and good, not just go along with what is expected. For her, queer theory and pride are very useful to finding ways to accept herself years before she knows about anything like disability pride or activism.
Women’s Health Org. (2019). Diabetes. womenshealth.gov/a-z-topics/diabetes
Global Forum for News and Information on Endometriosis. (2017) Facts about endometriosis.