A Dangerously High Threshold for Pain

by Imani Perry

Audible Original
A groundbreaking new work from National Book Award Winner, Imani Perry.
Imani Perry’s Audible Original A Dangerously High Threshold for Pain tells the dramatic story of her ongoing struggle with lupus–an autoimmune disease that attacks multiple organ systems—and what we can all learn from those who are grappling with chronic illness. It’s a powerful and poetic story that evokes the works of Susan Sontag, Ta-Nehisi Coates, and Audre Lorde.

We follow Perry as her body sends her the first warning signs that something is wrong—" one afternoon something hurt in a way that folded my body in two…the pain felt biblical." We are then taken on a journey through a medical labyrinth as she seeks solutions to her suffering and struggles to juggle illness, her high-flying career, and her personal life.

This is a story not just about pain, but about hope, as Perry learns to coexist in her body with her disease, and finds comfort in sharing her story. As she puts it, "I write to care for myself".

©2023 Imani Perry (P)2023 Audible Originals, LLC

Genres: Nonfiction, Audiobook, Memoir, Disability, Medical, Race, Health

Audiobook

Published March 2, 2023

About the author

Imani Perry, a professor of African American studies at Princeton, first appeared in print at age 3 in the Birmingham (Alabama) News in a photo of her and her parents at a protest against police brutality. She has published widely on topics ranging from racial inequality to hip-hop and is active across various media. She earned a Ph.D. from Harvard University, a J.D. from Harvard Law School and a bachelor's degree from Yale University.

(from http://www.princeton.edu/main/news/ar...)

Reviews

[Raymond · Rating 5 out of 5]

Imani Perry has written her most powerful and personal story yet, her own. In this audiobook, Perry tells her story of living with Lupus and Graves Disease. This was all surprising to me because in my mind she is the epitome of picture-perfect health. In this book, she shares her story of how she first came to learn she had these chronic diseases, her experiences with the medical system as a Black woman, and the reaction from friends and colleagues many of whom showed no care for her. I'm amazed at how vulnerable and transparent she was about her health, many people especially Black people keep these kinds of things secret or close to family, but Perry shares this to be an offering to others, in the tradition of Audre Lorde, who is quoted often, and others who have written openly about health challenges they have faced as people in the public eye.

[Becky · Rating 5 out of 5]

I picked this up from Audible thinking that it would be about the medical industry, and the racism that still pervades it, especially when it comes to Black women.

It was not that. Well not entirely that.

This is my second Imani Perry book (the first being South to America: A Journey Below the Mason Dixon to Understand the Soul of a Nation), and I honestly had no idea that she suffered from the health issues that she does. It's entirely possible that I missed references to this in her previous book, one that was as much about her and her family as the regions and cultures she was exploring, but if they were there, I don't think it would have been clear that they were due to chronic illness, rather than just tiredness or headaches from travel or exertion, etc. I hope that it wasn't so easy for me to overlook something like that.

But... honestly, it probably is. I don't know her, and even if I did, she said herself that she tends to disappear when she's struggling. We don't know what someone else is going through.

This book felt... raw. So personal and vulnerable and open about her experience with her illnesses. I really related to some of what she wrote and said here, even though I don't have chronic illness in the same way she does. I suffer from migraines and cluster headaches, but thankfully they are occasional, much less frequent and severe now than when I was younger. On the scale of things, my situation can't compare at all. Not that it's a competition. I just mean that, yes, I suffer from a neurological disorder that can be debilitating, but for me, I don't think they qualify in the same way as Lupus and Graves Disease. (I just looked it up, and nope, I don't meet the threshold for chronic migraines or cluster headaches. And also, FFS WHY IS THAT THRESHOLD SO HIGH?? 15 migraines a month??!)

Anyway, I digress. I empathized and sympathized with her, and I really appreciated the honesty and clarity in her writing about dealing with these illnesses. It was informative and heartbreaking.

[Gemini · Rating 4 out of 5]

Informative

I was interested in this book because I expected it to focus on the disparities in healthcare for Black women. She didn’t go in that direction. She gave a much more personal account of how chronic illness impacts every part of her life. As someone that has been thankfully spared from a chronic illness, I was appreciative of her candor. I learned a lot about autoimmune diseases effects on the mind and body. Her easygoing narration made it much more palatable.

[Thelma · Rating 5 out of 5]

A Dangerously High Threshold For Pain was a very eye-opening story about Imani Perry.

Imani I really feel you and see you and I say this with respect and admiration, I felt sad reading what you had to endure in the hands and voices of a bunch of ignorant racists who felt so entitled and think and thought they were the chosen ones when in reality is just laughable to see these people from whom they really are, a bunch of sheep ignorants who can't see farther than their wallets and their skin.

Imani's story is the story of many around the world who is suffering from lupus or any other chronic illness that doctors don't even know how to treat, and they will usually give a wrong diagnosis or dismiss you when they don't even know what they're even treating.

Imani went through so much, many different symptoms and pain and illnesses and treatments, without ever getting any hope, most of the doctors will say a bunch of things but will never find a reasonable treatment or cure.

Imani, have you tried Anthony Williams's approach? I hope one day people give their bodies a chance to try and heal themselves with food rather than listen to a bunch of idiots saying "fruit is bad" if a doctor ever tells me to stop eating fruit I will run away as far away as I can never to return.

I come from a family of Doctors and I can say they don't have all the answers and they are not always right, sometimes they will miss diagnose, and sometimes they will even lie to you or even say something just to put you at ease when the reality is even farther. We live in a world where pharmaceutical corporations pretend to be more powerful than God and nature, we live in a world where humans and doctors feel like they can do whatever they want and diagnose and treat you as they please, and if you even dare to mention something holistic or alternative they will make you feel like a weirdo or like you're insane.

May I remind you that medicines come from a plant?????? have you forgotten that ?? and now you're telling the world that plants and food are irrelevant to your body??? wow

all my love and admiration for Imani, you're a warrior Imani never forget that, and no one should ever feel entitled to tell you how to feel and what to say, and how to act you're unique and beautiful.

love this audiobook.

[Hannah Hedgepeth · Rating 5 out of 5]

I've been living with Lupus for at least half of my life now, and I will continue living with it until the day I die. This disease is complicated and difficult, it has no cure currently and management is the only option. Trying to explain my Lupus to others is often very difficult for me. Unless you are going through it or another chronic illness it is very difficult to fully grasp the impact it has on an individual. You may have sympathy and empathy for us but you will never fully get it...and that is ok. Just having someone listen, acknowledge our pain, and validate us is enough sometimes.

Even though I've been battling Lupus for so long I honestly haven't done a lot of reading about it on my own besides researching whatever medication I'm about to be prescribed (currently doing in another tab while writing this) or looking up what test results mean. This was the first time I've read/listened to someone else's personal story with this horrible thing we have in common. I felt so understood. Many of Imani's words felt as though they came straight from my soul. So many things I've felt or experienced over these long years were perfectly explained. I will share some of my favorite quotes below:

"We live always on the precipice of wiping out. One moment you may feel fine, another there is searing pain. Chronic diseases are not lived chronologically. They are lived in repeating patterns, they ebb and flow."

"My sense of malaise, a constant humming sadness, a melancholy and confusion, a specific grief because no one I met in the future would know the me I once was before Lupus, thus making me effectively unknowable..."

"I cannot be defined by my aspirations. I might not be able to much of anything I planned to do...if I live on and leave this earth without achievements of the sort I've set before myself, what will I do instead?"

"If you are struck with a disease as a young person, you are cast into the land of the truth of the human condition. It is always indeterminate and our bodies, no matter how much we exercise them or feed them nutritiously are fragile."

"I have learned that we have to be responsible for our own health, but not naïve. We have to be self-advocates, while still respecting research and expertise. I was a student of everything and that required humility and vulnerability. I had to lean into my condition as a novice in this body's journey."

"...when my body betrays me I disappear, either physically or emotionally. For most people who love me I have yet to figure out my disappearing acts...Disappearing is my worst quality as a human being. It is directly connected to my illness'. That doesn't make it OK, it just is what it is."

"I am fragile. My body is not normal. It will not evade moments of crisis. It is what it is."

Even though I have had Lupus for half of my life, it still is hard to come to terms with. I think maybe it's because this illness gives you brief moments hope or relief and suddenly you feel free, you forget the war being waged inside your body. Then a flare comes, it could minor or it could be traumatic, there really is no way to know until you're in it. This memoir has inspired me to start cataloging my journey with Lupus while I can still remember most of it. It may help someone in the same way this helped me.

[Tianna ❀ · Rating 5 out of 5]

I related a lot to what she was saying as someone with illnesses myself. Really well articulated and pretty eye-opening.

[Asia Daniels · Rating 5 out of 5]

Listened to the audiobook narrated by Imani herself- her voice is flawless and her writing is even better. This book is poetic and informative and emotional. It’s short but contains so much. I loved it and highly recommend to any Black woman and anyone going into healthcare to look at medicine from WOC’s pov. One of the best books of 2023 so far.

[Megan Gathany · Rating 5 out of 5]

This was a quick, yet incredible listen. The author was vulnerable in her recounting of the events within her health journey, while also giving visibility to those on similar journeys. I am grateful to have found someone who is able to put words to things I cannot. I think this would be a very helpful read for loved ones of chronically ill individuals, as this lack of words is not an uncommon experience among us.

[Jerrie · Rating 5 out of 5]

I have been managing my own chronic illness for over 14 years. Reading this book has been a beautiful reminder of what it is like to live in my body.

There are very few books out there that capture our stories, especially those of us that were diagnosed in our early 20s. The time when we’ve had to figure out careers, we’ve had to figure out love, and we’ve had to figure out family. These experiences are hard to capture, and Imani Perry does this eloquently and succinctly. It was my reminder that so many more stories need to be told.

[Coffee&Books · Rating 4 out of 5]

I dont want to admit to having not paid any attention whatsoever to Ms. Perry but......everything in this micro memoir (I just made that up) was new info to me. I am a person intrigued by the body and human condition so this was a great listen. I listened to Audre Lorde's memoir of her cancer journey in 2022 and it was nice to see it refrenced here- as well as THE BODY KEEPS THE SCORE which I've been meaning to read and I guess I have a reason to now.

Nicely done, good length to give a tease and tell a short, true story. Read by the author.

[Elizabeth · Rating 4 out of 5]

A Dangerously High Threshold for Pain is Imani Perry's memoir essay on living with Lupus and Graves Disease as a Black woman in the USA. While those are not among my illnesses, I am also disabled by chronic disease, and it was incredibly easy to relate to many of her experiences, especially around pain, fatigue, and bad vs good experiences with doctors. The way she highlights race as part of the conversation is also enlightening since I am white and don't experience racism, in the medical industry or otherwise. I really like the way she worked various works on illness from the last century into the book, it really broadened the experience of reading this for me.

As a whole, I really appreciated this one. Obviously not everything in this book is my experience, but there was so much that really resonated with me, and even as a disabled person who connected a lot to the work, I think reading disability experiences outside one's own is still really important.

[MJ Smith Reads · Rating 2 out of 5]

I’m absolutely certain she has a story to tell, but this was excruciating. There was little movement to the story, there was little tying my interest, the stories were so vague and removed at times it seemed like she was glossing over all the details and soooo much repetition.

It honestly felt like a really long essay, instead of a well detailed and documented experience as a POC being marginalized in America due to her disease. This needed serious rewrites with better storyboarding/formatting to the story, but I feel like if it got more revisions it would have been a force because the injustice is well captured. It just needs better presentation so an ordinary reader would appreciate it and feel its power to want to help create change.

[Fátima López Sevilla · Rating 5 out of 5]

I have dermatomyositis, but lupus was one of the possibilities doctors looked into when trying to find a reason for my symptoms: fatigue, muscle pain, muscle weakness, joint pain, rashes...

The first part of the book has made me cry so much, with her stories of tests and dismissive doctors when trying to find a diagnosis. Because it reminded me of my own journey.

You know it's bad out there when your boyfriend's reaction to telling him about how the author was lied about her positive ANA test (I had it too, and it was what ruled out lupus) is "It doesn't shock me. 5 years ago, maybe. But now, with all we've been through with your doctors, I can believe it, and I am not surprised."

We need better care, better understanding of rare diseases, better education in the healthcare providers...

Her stories later about how she manages and how she feels while living with the chronic pain and fatigue also made me emotional.

Really a great short listen for anyone with a loved one that is a spoonie or a zebra.

And mainly if that spoonie or zebra is a woman or a person of colour.

[Bookfairy · Rating 5 out of 5]

This is a powerful story about chronic illness/disease, and what that means for the author's relationship with others and the world at large. Perceptions about oneself change, perceptions and assumptions about you (especially when you don't *look* like you have anything wrong) make navigating illness even more complicated.
These frustrations and skewed feelings resonated with me, and I think anyone who knows, is related to, or is dealing with a problem/situation like this would benefit from reading (well, listening) to this story.
Perry also talks a little about the medical systems' assumptions and dismissive behavior toward women, and people of color, I would add that if you're overweight that's another reason many issues will be overlooked or hand-waved, leading people to suffer for much longer than necessary.

[Brandi Garcia · Rating 5 out of 5]

The author openly and thoughtfully tells about her journey to the diagnoses of Lupus and Graves’ disease. She shares her experiences navigating the medical world as a woman, but also a black woman. She shares of the loneliness of living a life with medical disabilities in such a way that enables the reader to either relate or become aware. She is a mother, a daughter an accomplished scholar, author of several books and a professional. I was personally touched by the vulnerability in the telling of her story.

[Katherine R · Rating 5 out of 5]

I didn't know I needed to read this but I did. Professor Perry's words are cathartic and vindicating even as they are from a perspective that I'll never be able to fully understand. She weaves in and out of each issue and symptom, each outside world concern whether medical, racial, sexist or some combo of these things with such precision; I felt a kinship with her and humbled by her all in one. I'm sorry she struggles with the horrible psychology that comes with chronic illness even as I am thrilled to hear someone else put voice to it in a way I can only hope to match one day. Her ability to live in the world and face the daily judgment of colleagues, the struggles to hear her own body speak to her, the choices she makes to just get by, get through...I empathize even as I cannot fully relate to what she faces having different diagnoses, race and advocacy network.

I cannot recommend this highly enough.

[Thirteen Orange Ivy Designs · Rating 3 out of 5]

I really enjoyed this as someone who knows how chronic pain is. Hearing someone speak about it in a way you understand because you’ve been there is powerful. It was interesting and insightful. I just struggled with the religious parts. Due to my own religious trauma, anytime religion comes into things it makes it hard for me to connect or focus so that’s where it lost me. But reading this, especially right after reading Say Anarcha, was interesting.

[Kameka · Rating 5 out of 5]

Wow. Just wow. A deeply personal work by one of the greatest writers and thinkers of our time. Simply stated, you can "know" someone but "not know" them or what they're going through on a daily basis. Thank you for saying the hard part out loud, Imani. We can only become better (friends, caregivers, partners etc) by listening and learning.

[Helen · Rating 5 out of 5]

"If someone you love needs you, it is time to stop and pay attention. If they say they are okay and you know they are not stay present, irritate them with your attentiveness."
A beautifully written narrative of pain, ignorance and listening to your body.

[Tutankhamun18 · Rating 3 out of 5]

“In surfer culture, radical refers to riding the wave at the very limits of ones control and that is a very apt metaphor for chronic disease life.“

„A specific grief because noone I met in the future, would know the me I once was before lupus, thus making me effectively unknowable.“

[Tart · Rating 5 out of 5]

nevermind the disabled girl crying before bed, feeling seen

[Erin Bookishness · Rating 5 out of 5]

A very short but powerful testimonial about life with chronic illness.

[Tacey Raye · Rating 5 out of 5]

If I could give this 10 stars I would! Anyone with a chronic illness or who knows one needs to read this.

[Melissa · Rating 3 out of 5]

3 1/2 stars, interesting, intelligent and thoughtful discussion of subjects and circumstances that don't get enough attention, beautifully read, but stayed rather shallow, I wanted more

[Meredith · Rating 4 out of 5]

3.5 stars. A brief exploration of the author’s experience of living with chronic medical conditions. In addition to her own thoughts, and she includes the experience of others with illness. It sparked by interest in wanting to read Audre Lorde’s book about her experience of cancer.

[WellReadAndRatchet · Rating 5 out of 5]

Such a short and not so sweet book. If you ever wonder what it's like to live with a chronic illness or multiple, you should take a listen. As of right now it's exclusively on Audible so take that into mind but it's definitely worth it.

[Anne Scott · Rating 5 out of 5]

Wow. This was beautifully written and narrated. She writes so eloquently about her own struggle with lupus. I have chronic fatigue syndrome so this book spoke to me in so many ways. I highly recommend this to anyone who wants to understand anyone who suffers with any “ invisible illness “.

[Soraya · Rating 2 out of 5]

This book is mainly an autobiography from someone who suffers from major depression. When I finally started to empathize with Imani’s misfortunes, the author decided to pull the race card. She then goes on to shamelessly lie about her arrest - a suspended license, not a parking ticket. The full body cam video of the incident is online for anyone to see. After watching it, you’ll conclude that her arrest was warranted and that the two police officers involved did their job without any prejudice. To make matters worse she trashes the MAGA Republicans and Fox News as if they were responsible for her actions. Ironically, Imani complains that she was searched by a male policeman, instead of his partner, a female officer. For someone who is an astound advocate for the LBGTQ+ community, she sure reverted quickly, out of convenience, to the two gender reality we live in. My advice for the author is: make friends, ask for help when in need, and stay out of politics. After all, Republicans buy books, too.

[Candice Hale · Rating 5 out of 5]

𝘼 𝘿𝙖𝙣𝙜𝙚𝙧𝙤𝙪𝙨𝙡𝙮 𝙃𝙞𝙜𝙝 𝙏𝙝𝙧𝙚𝙨𝙝𝙤𝙡𝙙 𝙛𝙤𝙧 𝙋𝙖𝙞𝙣 by Imani Perry is a transparent testimony of a woman that has inherited pain from her ancestors. Any day could be a raging fight or a silent defeat. Perry tells us that to be diseased is to “be without ease.” Living with a chronic illness has positioned her to be a “soldier in the land of the upright.” To live a chronic disease life is not an easy one because Perry is often very sick and she often hid it from others. To hear her raw honesty about the details of her life pre-diagnosis and post-diagnosis is mind-blowing.

Realizing that Perry had to undergo two maladies with Lupus and Graves Disease while pursuing both a Ph.D and a law degree is nothing short of amazing and makes me appreciate her even more than I did before. I’ve met Perry several times and I wasn’t even aware that she suffered from these illnesses, but that’s the nature of having a high threshold for pain. Plus, she mentions in the short that “people are ashamed of illness; sick people are lazy.” We know that’s not true though, but it doesn’t bring empathy forward either. Perry’s words here are a balm for a wound that so many Black women in pain need to feel because it is so relatable and endearing for a society that pushes us to the side.

As a person who has suffered with chronic migraine disorder since 2012, I felt so much of what Perry described her. The silencing about pain, the disappearing acts, and the pushing through the pain. You do become part of this “fraternity of the ill” she discusses. When you are sick or in chronic pain, you want friends to show up and even family to be there for you, but in the end you only really have yourself and that has to be enough. Migraines are debilitating and keep me in the bed/couch most days, but many people think I can just “take a pill” and it will go away. The chronic nature of the pain affects so much more. Even though my invisible disability is different from Perry’s, I can empathize with her conditions.

I really enjoyed 𝘼 𝘿𝙖𝙣𝙜𝙚𝙧𝙤𝙪𝙨𝙡𝙮 𝙃𝙞𝙜𝙝 𝙏𝙝𝙧𝙚𝙨𝙝𝙤𝙡𝙙 𝙛𝙤𝙧 𝙋𝙖𝙞𝙣 because it shows the vulnerability of Black women and fragility of disease. In the end, Perry also gives us hope: “We live with wound. We are witnesses to the imperatives of good care. We have testimonials to offer. Living is dynamic. Forgetting that dynamism is murderous. Acknowledging it promises life everlasting. To life.”

[Keren · Rating 5 out of 5]

As I listened, I recognized patterns of thinking about the body, health, and identity that have often settled through my own mind. Even though I do not currently suffer from a chronic illness of the body, my warped perception of attractiveness and health constantly presses me into anxiety and feelings of insufficiency.

I also related to Perry's discussion about the many ways in which she isolates herself and is isolated by society. Her chronic illnesses consume her days, zap her energy, and separate her from friendships. Similarly, though not as intensely, the stressors of being a teacher and a mother consume my days. I often don't get to feel the sun on my face, so engulfed am I in an endless and impossible list of required tasks that I just complete of I'm to be enough. It's exhausting, and it does cause isolation. I feel lonely in my experience, which is often minimized by others who don't understand, and I'm so busy and tired that the only real life I live is the one I recover during long breaks from school. Even then, there's no way to rebuild relationships interrupted by so many months of absence, and there's no way to fully invest in my possible in only a month and a half. While my experience is nowhere close to the experience of chronic illness, I felt as if she were speaking straight to me.

There's so much more here about race and the medical community, hidden illness, the toxicity of health and wellness culture, and the systems of society that breed unwellness, but these are the things that I connected with the most.