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Unseen: The secret world of chronic illness
Broadcaster Jacinta Parsons was in her twenties when she first began to feel unwell – the kind of unwell that didn’t go away. Doctors couldn’t explain why, and Jacinta wondered if it might be in her head. She could barely function, was frequently unable to eat or get out of bed for days, and gradually turned into a shadow of herself. Eventually she got a diagnosis: Crohn’s disease. But knowing this wouldn’t stop her life from spiralling into a big mess of doctors, hospitals and medical disasters.
What’s most extraordinary about Jacinta’s story is how common it is. Nearly half of Australians live with a chronic illness, but most of these conditions are not obvious, often endured in secrecy and little understood. They are unseen.
With compelling candour, Jacinta trains a microscope on the unique challenges of living with an invisible condition. She lays bare the struggles with shame, loss of identity, the threat of mortality, and the profoundly complex relationships between the chronically ill and their own bodies, as well as with those around them. It’s a story of trying to fix an unfixable illness, getting beaten down then clawing back up, and how that experience can shape a life.
What’s most extraordinary about Jacinta’s story is how common it is. Nearly half of Australians live with a chronic illness, but most of these conditions are not obvious, often endured in secrecy and little understood. They are unseen.
With compelling candour, Jacinta trains a microscope on the unique challenges of living with an invisible condition. She lays bare the struggles with shame, loss of identity, the threat of mortality, and the profoundly complex relationships between the chronically ill and their own bodies, as well as with those around them. It’s a story of trying to fix an unfixable illness, getting beaten down then clawing back up, and how that experience can shape a life.
330 pages, Kindle Edition
Published September 29, 2020
26 people are currently reading
467 people want to read
About the author
Jacinta Parsons
8 books20 followersJacinta Parsons is a broadcaster, radio maker, writer, and public speaker. She currently hosts Afternoons on ABC Melbourne delivering a popular mix of art, culture and ideas. She began her radio-life at community radio station 3RRR over a decade ago, where she hosted several shows including Breakfasters and Detour. But her peak Melbourne moment came earlier, when she worked as a tram conductor (proudly wearing one of the last of the Connie’s green uniforms).
Jacinta has lived with Crohn’s disease for over 20 years and is an ambassador for the Crohn’s and Colitis Association and speaks and writes about the impact of living with chronic illness. She is also an active member of the arts & music community and is a board member for Melbourne disability theatre company, Rollercoaster. Unseen is her first book.
Jacinta has lived with Crohn’s disease for over 20 years and is an ambassador for the Crohn’s and Colitis Association and speaks and writes about the impact of living with chronic illness. She is also an active member of the arts & music community and is a board member for Melbourne disability theatre company, Rollercoaster. Unseen is her first book.
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Displaying 1 - 30 of 53 reviews
September 21, 2020
Disclaimer: I endorsed this book and was a sensitivity reader for Jacinta.
Unseen was relatable and determined - I loved it!
Jacinta Parsons writes bravely and honestly about being chronically and invisibly ill. While Jacinta documents her own experience in Unseen, she makes chronically ill and disabled readers feel very seen.
This book is an exploration of Jacinta’s body, the complex medical system she’s navigated for over 20 years and the discrimination that comes with being chronically ill. It’s also a celebration of just how strong chronically ill bodies are, and shows what’s possible when we are given the right supports.
Unseen will be seminal for people with unseen illnesses and disabilities.
It’s such an exciting time for disabled writers right now.
Unseen was relatable and determined - I loved it!
Jacinta Parsons writes bravely and honestly about being chronically and invisibly ill. While Jacinta documents her own experience in Unseen, she makes chronically ill and disabled readers feel very seen.
This book is an exploration of Jacinta’s body, the complex medical system she’s navigated for over 20 years and the discrimination that comes with being chronically ill. It’s also a celebration of just how strong chronically ill bodies are, and shows what’s possible when we are given the right supports.
Unseen will be seminal for people with unseen illnesses and disabilities.
It’s such an exciting time for disabled writers right now.
December 7, 2020
I did not expect to cry quite so much while reading this but Parsons’s brutal honesty, her ruminations on mortality and her many displays of tenacity really moved me. The book’s strength is in her own story and while I appreciated the moments she brought in others and experts I was drawn completely to her telling of her experience of Crohn’s Disease and chronic illness.
November 23, 2020
"When what you experience is invisible, the extension is that maybe your expression of it should be too'.
This powerful memoir is Jacinta crushing the invisibility and silence of illness, chronic pain and disability that is largely unseen, and laying it all out on the pages so we can all try to better understand such an experience.
Jacinta developed crippling pain and symptoms when she was first living with her boyfriend, planning out goals and dreams, and working her first grown up job. The symptoms of fatigue and gastrointestinal issues creep into her daily life, to the point of being all consuming. The gradual takeover of her body and day to day, the gritting through extreme pain to get through an expected or desired activity, and then the struggle to be believed and find answers.
There are so many aspects of chronic illness I have learnt here - that's the value of an actual account. The steps to realisation that there is something really wrong, the bargining that maybe it's not happening, the struggle to find answers, the judgement throughout from people who don't know or don't understand are like additional stabs of pain across the journey. The changes and evolution of a chronic illness, and how it's a forever moving entity.
As a health professional, this book is an eye-opener, and one I think should be read by all of us, doctors especially. Jacinta has laid her experience of the health system out in it's bare bones - from the waiting rooms, the rollercoaster and yet privilege of our Aussie public health care system, the re-explaining and educating new doctors, to the indignity of being seen as a specimen for medical students. The humanity of the doctors, and nurses, that make a real difference, and realisation that the good ones are just being human and showing empathy.
Jacinta outlines this process, her surgeries, treatments gone wrong, the fluctuations of her body, and her working through getting to know her illness.
But, as all memoirs of people who are ready to share their story, and are able to do it well because they have done the hard emotional work on themselves first, and as they write, this read is a taking back of power for Jacinta. Her quest to be seen, heard, understood and have the greater community acknowledge the reasonable adjustments needed for the full range of
living.
This powerful memoir is Jacinta crushing the invisibility and silence of illness, chronic pain and disability that is largely unseen, and laying it all out on the pages so we can all try to better understand such an experience.
Jacinta developed crippling pain and symptoms when she was first living with her boyfriend, planning out goals and dreams, and working her first grown up job. The symptoms of fatigue and gastrointestinal issues creep into her daily life, to the point of being all consuming. The gradual takeover of her body and day to day, the gritting through extreme pain to get through an expected or desired activity, and then the struggle to be believed and find answers.
There are so many aspects of chronic illness I have learnt here - that's the value of an actual account. The steps to realisation that there is something really wrong, the bargining that maybe it's not happening, the struggle to find answers, the judgement throughout from people who don't know or don't understand are like additional stabs of pain across the journey. The changes and evolution of a chronic illness, and how it's a forever moving entity.
As a health professional, this book is an eye-opener, and one I think should be read by all of us, doctors especially. Jacinta has laid her experience of the health system out in it's bare bones - from the waiting rooms, the rollercoaster and yet privilege of our Aussie public health care system, the re-explaining and educating new doctors, to the indignity of being seen as a specimen for medical students. The humanity of the doctors, and nurses, that make a real difference, and realisation that the good ones are just being human and showing empathy.
Jacinta outlines this process, her surgeries, treatments gone wrong, the fluctuations of her body, and her working through getting to know her illness.
But, as all memoirs of people who are ready to share their story, and are able to do it well because they have done the hard emotional work on themselves first, and as they write, this read is a taking back of power for Jacinta. Her quest to be seen, heard, understood and have the greater community acknowledge the reasonable adjustments needed for the full range of
living.
December 26, 2020
(3.5 stars)
Unseen is a medical memoir that documents the author's, Jacinta Parsons', struggle with Crohn's Disease. It takes a well-balanced approach of presenting Parson's experiences alongside research and opinion drawn from medical professionals and people living with chronic illness. It's clearly written, but quite a sad and introspective read and probably a bad choice for the end of a very depressing year. Unseen would be helpful if someone you love has a chronic illness, because it addresses how many of the ways healthy people respond to them are perceived: "There is a deep societal suspicion of ill people, codified in 'helpful' remarks: 'Should you change your diet?' 'Have you tried acupuncture?'" These comments make it clear to chronically ill people, Parsons posits, "that illness can be fixed and it's our responsibility to fix it."
There are some ideas that I found useful in this book. Parsons' points out, not for the first time, that diagnosis for women is slower than it is for men, highlighting its roots in the historical policing of women's bodies. The importance of diagnosis—"the bestowing of a name upon what is really a formless thing"—was one of my key takeaways. This is not as you might think because it marked the advent of better treatment, but because it helped the sick person be believed: "adults who have not received a diagnosis often feel that they need to continually legitimise their illness to doctors."
"I would try to look like the sort of person he'd be interesting in keeping alive." This quote epitomises one of the bits I found jarring was the need Parsons felt to make all doctors/nurses like her, as if her treatment hinged upon this. To my mind, it sits at odds with how most health system actors conceptualise providing care. While I agree some healthcare users are hampered by stigma and discrimination (unconscious bias) from being believed, I wouldn't have put Parsons, or the particular condition she lives with, in that category. Can't say I loved this book, but I learned some things about living with chronic pain, and how people whose lives are irrevocably changed by having a chronic illness perceive the rest of the world.
Unseen is a medical memoir that documents the author's, Jacinta Parsons', struggle with Crohn's Disease. It takes a well-balanced approach of presenting Parson's experiences alongside research and opinion drawn from medical professionals and people living with chronic illness. It's clearly written, but quite a sad and introspective read and probably a bad choice for the end of a very depressing year. Unseen would be helpful if someone you love has a chronic illness, because it addresses how many of the ways healthy people respond to them are perceived: "There is a deep societal suspicion of ill people, codified in 'helpful' remarks: 'Should you change your diet?' 'Have you tried acupuncture?'" These comments make it clear to chronically ill people, Parsons posits, "that illness can be fixed and it's our responsibility to fix it."
There are some ideas that I found useful in this book. Parsons' points out, not for the first time, that diagnosis for women is slower than it is for men, highlighting its roots in the historical policing of women's bodies. The importance of diagnosis—"the bestowing of a name upon what is really a formless thing"—was one of my key takeaways. This is not as you might think because it marked the advent of better treatment, but because it helped the sick person be believed: "adults who have not received a diagnosis often feel that they need to continually legitimise their illness to doctors."
"I would try to look like the sort of person he'd be interesting in keeping alive." This quote epitomises one of the bits I found jarring was the need Parsons felt to make all doctors/nurses like her, as if her treatment hinged upon this. To my mind, it sits at odds with how most health system actors conceptualise providing care. While I agree some healthcare users are hampered by stigma and discrimination (unconscious bias) from being believed, I wouldn't have put Parsons, or the particular condition she lives with, in that category. Can't say I loved this book, but I learned some things about living with chronic pain, and how people whose lives are irrevocably changed by having a chronic illness perceive the rest of the world.
October 16, 2020
This is an excellent book. It is written with an engaging down-to-earth assuredness. It is confrontingly honest, and clear explanation of her harrowing experience of living with a chronic debilitating condition, and especially one which is not obvious to others. In very practical terms the book perceptively explains the challenges of negotiating the health system, particularly for people with undiagnosed illness, or for people with chronic unfixable disease. It is a powerful call for a broad understanding of the challenges faced by those with “unseen” conditions. The observations, though, are thought-provoking for anyone living through illness, and for the medicos who treat them.
Informing these practical issues, and what really enhances our understanding is her very careful exploration of her personal journey in coming to terms with her condition and facing her human frailty. It is about despair, and anger and grief but it is also about hauling, and being hauled, out of those. Importantly it’s about the threads that bind - family and friends, and community. The keen observations of that journey and its lessons are insightful, and wise.
Informing these practical issues, and what really enhances our understanding is her very careful exploration of her personal journey in coming to terms with her condition and facing her human frailty. It is about despair, and anger and grief but it is also about hauling, and being hauled, out of those. Importantly it’s about the threads that bind - family and friends, and community. The keen observations of that journey and its lessons are insightful, and wise.
October 23, 2020
4.5 stars.
I think I am always going to rate a medical memoir above 4 stars. It speaks so much to my life experience and I won't apologise for that.
My Mum bought me this a few days ago after my third surgery (and number I-don't-know-how-many general anaesthetics). It was perfect timing and has been such a comfort as I am in so much pain. I am still in hospital but I feel a bit stronger having read this now.
The two parts of the book that hit me were the stories which detailed her first trip out of the house after surgery and the moments after her daughter was born.
"Our capacity to adjust to our experience is both our greatest strength and our greatest weakness"
I think I am always going to rate a medical memoir above 4 stars. It speaks so much to my life experience and I won't apologise for that.
My Mum bought me this a few days ago after my third surgery (and number I-don't-know-how-many general anaesthetics). It was perfect timing and has been such a comfort as I am in so much pain. I am still in hospital but I feel a bit stronger having read this now.
The two parts of the book that hit me were the stories which detailed her first trip out of the house after surgery and the moments after her daughter was born.
"Our capacity to adjust to our experience is both our greatest strength and our greatest weakness"
June 24, 2025
A well written insight into the first-hand experience of a few individuals and their chronic illnesses, interspersed with some insightful research.
Whilst this is a personal reflection on Jacinta's lifetime journey with Chrohn's disease, this isn't just a memoir covering this intimate experience.
Jacinta has interspersed her story with other chronic illness sufferers' experience to broaden her points and strengthen the understanding of these for a wider audience.
This book leans into disability, unseen illness, work being intimately linked to wellness and productivity, even in the most supportive environments, along with powerful reflections that will help other people with chronic illness to have language to describe their journey through the baggage of shame, distrust, unconscious bias and general disbelief from either the general populace or the medical profession (who often hold a position of power in the patient/doctor relationship).
Thanks to Jacinta for exploring this topic, sharing such an intimate experience and bringing it all together to allow those that haven't crept into this often hidden world, yet.
Listened as an audiobook. Read by the author. 🥰
Whilst this is a personal reflection on Jacinta's lifetime journey with Chrohn's disease, this isn't just a memoir covering this intimate experience.
Jacinta has interspersed her story with other chronic illness sufferers' experience to broaden her points and strengthen the understanding of these for a wider audience.
This book leans into disability, unseen illness, work being intimately linked to wellness and productivity, even in the most supportive environments, along with powerful reflections that will help other people with chronic illness to have language to describe their journey through the baggage of shame, distrust, unconscious bias and general disbelief from either the general populace or the medical profession (who often hold a position of power in the patient/doctor relationship).
Thanks to Jacinta for exploring this topic, sharing such an intimate experience and bringing it all together to allow those that haven't crept into this often hidden world, yet.
Listened as an audiobook. Read by the author. 🥰
December 26, 2020
I really loved this.
I was keen to get my hands on a copy after listening to Jacinta Parsons speak on ABC's Conversations program (available here).
I listened to it as an audiobook, narrated by the author. That made it feel like one of those really great conversations with an old friend - who can you can talk about all the really shitty things as well as the great things in your life. It felt genuine, open and full of compassion.
Parsons does a great job of zooming in on her own story, then zooming out and looking at the public health system in Australia and the things we could do make things just a bit better for people living with chronic illness.
One story that really stuck with me, took place in the office of Parson's GP. She was telling the GP that, despite cracking all her best jokes and being generally charming, she hadn't managed to get her surgeon to show much interest. The date for some fairly drastic surgery was approaching fast.
Parsons: "I just can't crack him"
GP: "Well, look at it this way - if you needed your car fixed, would you go to the mechanic who could fix your car, or the one who laughs at your jokes?".
Both: Silence
Parsons: "But I'm not a car"
I was keen to get my hands on a copy after listening to Jacinta Parsons speak on ABC's Conversations program (available here).
I listened to it as an audiobook, narrated by the author. That made it feel like one of those really great conversations with an old friend - who can you can talk about all the really shitty things as well as the great things in your life. It felt genuine, open and full of compassion.
Parsons does a great job of zooming in on her own story, then zooming out and looking at the public health system in Australia and the things we could do make things just a bit better for people living with chronic illness.
One story that really stuck with me, took place in the office of Parson's GP. She was telling the GP that, despite cracking all her best jokes and being generally charming, she hadn't managed to get her surgeon to show much interest. The date for some fairly drastic surgery was approaching fast.
Parsons: "I just can't crack him"
GP: "Well, look at it this way - if you needed your car fixed, would you go to the mechanic who could fix your car, or the one who laughs at your jokes?".
Both: Silence
Parsons: "But I'm not a car"
December 13, 2020
Being a fellow Crohn's sufferer this was a great book and I will be sharing it with my family and friends to help them better understand me and what I face each day.
February 27, 2021
This book had a profound effect on me. It was beautifully written, raw at times and heartbreaking too. From someone who has an immune disease, thank you Jacinta for sharing your story.
April 19, 2021
This book is written with such heart and compassion. It should be compulsory reading for every medical professional.
December 21, 2021
Jacinta Parsons, you are pure joy, love and light! I have cherished our serendipitous little crossing of paths so I reached through the pages of your book, Unseen, scouring your words hoping to discover how you became, and there it was… a glimpse here, a glimmer there — of awakening, and inner transformation. What a beautifully woven map of understanding of humankind: of the complexities of chronic illness, disability, health care and the intricate web of relationships around diagnoses, perception and response — yet beyond a lived experience your excavation is intensely relatable in its reflection of all pain, all fear, all love and all hope. Whether we are vessels of generations of energy handed down or there is no rhyme to it at all, how you’ve leant into your life and managed to condense a deeply personal journey into a neatly printed package, when the story essentially never ends, is remarkable and inspiring. That Unseen is so utterly unputdownable, means you may yet need to eat your acknowledgment words at the back of your book, and one day write another! I hope you do.
Cheers to you — brave, smart, funny, kind and beautiful woman, I love this book, you gem of a human!
Cheers to you — brave, smart, funny, kind and beautiful woman, I love this book, you gem of a human!
June 2, 2021
Illness is like a natural disaster. In that way, it is simple, because you have little choice but to accept it.
Through my work, I am in contact with many people living with, or caring for others with chronic illness. COVID presents an interesting situation for these people - on one hand, they are under increased pressure because regular support services have stopped or are reduced, and with that comes isolation. On the other, many have told me that now 'everyone' is experiencing what they live with every single day - a sense of isolation, having to plan every outing, and being fearful for their health.
Jacinta Parsons's memoir, Unseen , chronicles her experience with chronic illness. It was published last year, in the middle of the pandemic, and she refers to the 'groundhog day' elements of COVID and chronic illness -
...what became apparent to me was that the virus, and the way we responded to it, replicated the experience of having a chronic illness. For me it was like muscle memory, each stage mirroring the ones I had gone through when I first became unwell. It was deja vu, but this time, the experience was being shared by the world.
Parsons covers many of the elements of chronic illness that are 'unseen' - the fact that diagnosis is often elusive and that it can take years before illness is managed, let alone 'treated'; that the emotional and mental exhaustion that comes with long-term pain and illness is frequently overlooked (she desbribes how her physical pain 'leaked through her' until it also became mental pain); that chronic illness puts immense pressure on personal relationships -
...when you're in your mid-twenties, you generally don't choose a partner based on their capacity to care for you.
And that health systems are not built to care for someone over the long-term (Parsons is very clear about the fact that her socio-economic bracket gave her access to care that others would not necessarily receive).
...the health system is a mirror of the often-flawed society in which it is embedded. Issues that are found in the broader community can be found there.
Parsons keeps the factual information about the health system; time taken to get a diagnosis; and the role of gender in getting that diagnosis (there is a tendency to attribute women's physical complaints to mental health, particularly 'hysteria'), very much described in the context of her own experience - it paints a rich and frustrating political picture, and it is this aspect of chronic illness that dominates Unseen.
What I most appreciated about this book was Parsons's detailed exploration of the multi-faceted grief that goes with a medical diagnosis. In the grief-business, we call it ambiguous grief and disenfranchised grief (that's experienced when people say things such as, "At least you don't have cancer"). Again, the losses associated with chronic illness, and being robbed of the future you anticipated, are frequently underestimated, misunderstood or ignored completely.
I realised how profoundly I had been changed. The person I'd been before I got sick, and the person I might have become, were both gone.
The failure of my body to fix itself hurt. It produced a grief that became difficult to bear or understand...
Parsons also addresses the unique pressures her diagnosis put on family and friends, including 'compassion fatigue', and the tightrope she is forced to walk because "...when your status is in flux, it also means that you can't reliably plan for anything." Feeling 'unreliable' was perhaps less troubling than the shame she experienced in having to rely on others for help, noting that she was grateful for the help, but ultimately wished she didn't need it -
You come to understand that illness is fundamentally shameful.
and
Shame also comes when we open ourselves up in the hope of compassion.
In some ways, there's no 'happy ending' to Parsons's story. Instead, she has adjusted to living with Crohns' disease. The adjustment has been physical, mental and emotional. She has done some things she never thought would be possible when she was first diagnosed (and those are things that others would take for granted, such as having a fulltime job, and having a baby).
Our capacity to adjust to our experience is both our greatest strength and our greatest weakness.
What is striking and most powerful about Unseen, is Parsons's honesty, which forces the reader to question their own application of compassion and empathy ('victim-blaming' is not always a clearly marked territory, but as soon as you start a sentence with "At least she....", you can be pretty sure you're in the zone).
4/5 Informative and insightful.
February 26, 2021
Exhausting and empowering all in one.
I read this through streaming tears.
There's so many phrases that have stuck with me, but none more so than "Because it wasn't illness that had destroyed my life so much as the fear it drew out of me". WHEW.
I read this through streaming tears.
There's so many phrases that have stuck with me, but none more so than "Because it wasn't illness that had destroyed my life so much as the fear it drew out of me". WHEW.
December 6, 2020
Unseen by Jacinta Parsons was so incredibly life affirming for me. In the world of the chronically ill, it can be difficult to give voice to what your life is truly like. Jacinta perfectly explains, the incessant hardships of every day life and the surprising strength in all of us to rise up and meet the challenges of the invisible beast. This book made me feel like I had been heard and understood. This book comforted me in a way I didn’t know I needed. Every single sentence spoke to me and validated each thought, feeling and experience that ulcerative colitis has visited upon my life. To Jacinta, thank you for having the courage to write this book. Because of you, I feel less alone in this crazy,terrifying,wonderful world.
August 3, 2022
An honest memoir about the author's experiences of being diagnosed and living with Crohn's Disease. It wasn't always an easy read, but I was left feeling full of admiration for her grit and determination. As someone with Ulcerative Colitis, I appreciated her insights into living with a chronic and "unseen" health condition. She raised some interesting questions about how society views people with such conditions, and the psychological challenges of living with something that has no cure, and is with you for life.
October 11, 2020
I love this book and devoured it in a weekend. It is beautifully written and weaves its way through Jacinta’s story, the reckoning of living life with a chronic illness and the pulling in of research and other chronically ill stories. It was everything I wanted it to be and everything I needed. I hope this is a story others will read and embrace, so that they’re able to be more understanding and pay more attention to the lives of those with chronic illness (and stop seeing it as such an insult to their own abled lives). Beautifully done.
February 26, 2021
A very easy (in the main) book to read. The difficulties experienced in the public health care system are to a lesser degree also apparent in the private health care system. Personally our experiences (and those in our orbit) have been if you find a good nurse you are very lucky. Worth reading if you are unfamiliar with chronic health situations an excellent reflection on the situation if you have.
October 10, 2020
Wow what a story of survival and success. I marvel at Jacinta Parsons’ beautifully positive and warm broadcasting style knowing there is this back story of incredible pain. Really thought provoking about how we view illness and especially illness without an ending. So much change is possible in our workplaces and I hope many people read this. Again wow.
October 17, 2020
Devoured this book in 24 hours - if you live with a chronic illness, this is a must read. She has written so eloquently about living with invisible disabilities, woven in with her own experiences. Perfection!
June 11, 2021
This is an excellent book and a must read for anyone who has ever been through a similar situation. I read this during my recent hospital stay for Crohn's and it made me feel so seen and far less lonely in the world.
October 21, 2020
Loved it - hits close to home.
February 15, 2021
Incredible read, if you have ever struggled with chronic illness or have had someone in your life that has, you need to read this book. It is like therapy and gives such amazing insight.
December 15, 2020
This book validated me in so many ways. Unlike Jacinta I was diagnosed with a chronic illness at age 4 that after 37 years people around me just don't get how hard it is, like Jacinta I'm sick of the struggles and the illness being unseen and COVID has definitely amplified that for me. The implication is if you have a cormobilitity you've done something to deserve it, for most of us it's genetics, environment and life. As Jacinta says in her book "We are always looking for reasons to explain why someone has died, reasons that made them different to us. We need to understand why a death has occurred, because logic and reason can negate the more frightening possibility that it's all just chance ".
The younger generation of type 1 diabetics have empowered me in many ways, they were their medical devices with pride, it's a badge of honor, I spent my 20s and 30s ashamed of what they did to my body but all too aware of how much more difficult my life would be without them. I wonder if Jacinta's struggle in this area is also generational or if the changes are that much different it's a different experience to mine totally.
Sitting in emergency in hospital alone in August with no support network I discovered how many of us there are, you can pick those of us that know the system, we come prepared, we don't fuss, we don't ask how much longer because we understand how they prioritize treatment, we know how to operate in the aloneness without even realizing what a strength that is.
Finally the unwarranted advice and condescending tone in which people in general like to throw around their opinions is exhausting and embarrassing. No yoga won't cure me nor will a low carb diet, I know you don't like needles, guess what neither do I but dying of DKA is a horrible way to go,perhaps you should try it. You being uncomfortable with my disease and my need for ongoing treatment (and yes reliance on big pharma) is not my problem, stop trying to make it mine.
The younger generation of type 1 diabetics have empowered me in many ways, they were their medical devices with pride, it's a badge of honor, I spent my 20s and 30s ashamed of what they did to my body but all too aware of how much more difficult my life would be without them. I wonder if Jacinta's struggle in this area is also generational or if the changes are that much different it's a different experience to mine totally.
Sitting in emergency in hospital alone in August with no support network I discovered how many of us there are, you can pick those of us that know the system, we come prepared, we don't fuss, we don't ask how much longer because we understand how they prioritize treatment, we know how to operate in the aloneness without even realizing what a strength that is.
Finally the unwarranted advice and condescending tone in which people in general like to throw around their opinions is exhausting and embarrassing. No yoga won't cure me nor will a low carb diet, I know you don't like needles, guess what neither do I but dying of DKA is a horrible way to go,perhaps you should try it. You being uncomfortable with my disease and my need for ongoing treatment (and yes reliance on big pharma) is not my problem, stop trying to make it mine.
May 24, 2021
I cried, I laughed, I disagreed, I agreed.
3.5 stars.
A very accessible writing style - as a broadcaster, Jacinta has honed her chops. She includes more than one quicksilver comic (sometimes darkly so) moments that are LOL funny, and twice as many tear jerking scenes, painting poignant pictures of human frailty and courage.
I knew Jacinta in 1995, briefly, before her illness really took hold, She expresses well in this book, the transformative power an illness can have.
I came to this account with a sense of curiosity. So much was familiar in the first part of the book, and there is something thrilling about reading an account of someone's life, who was in the same social circle. I could empathise with her more than I expected, having experienced my own difficulties, that like Jacinta's, lead to the death of dreams, and impacts on sense of self.
I am a believer in the potential for suffering to carve out a space in the soul for character.
I wrested with my desire to critique as I reflected on my very different analysis of the 'sick role', the medical-pharma system and Ms Parson's desire to be 'seen' in and for her disease role. Ms Parson's as a broadcaster, is a public figure, and this text has both strengths and weakness for that - it is by no means an exhaustive study of the field, nor does it try to be.
By the end, I could not help empathising, and resonating at times with Parson's capacity to suffer, her tenacity and eloquent powers of communication.
3.5 stars.
A very accessible writing style - as a broadcaster, Jacinta has honed her chops. She includes more than one quicksilver comic (sometimes darkly so) moments that are LOL funny, and twice as many tear jerking scenes, painting poignant pictures of human frailty and courage.
I knew Jacinta in 1995, briefly, before her illness really took hold, She expresses well in this book, the transformative power an illness can have.
I came to this account with a sense of curiosity. So much was familiar in the first part of the book, and there is something thrilling about reading an account of someone's life, who was in the same social circle. I could empathise with her more than I expected, having experienced my own difficulties, that like Jacinta's, lead to the death of dreams, and impacts on sense of self.
I am a believer in the potential for suffering to carve out a space in the soul for character.
I wrested with my desire to critique as I reflected on my very different analysis of the 'sick role', the medical-pharma system and Ms Parson's desire to be 'seen' in and for her disease role. Ms Parson's as a broadcaster, is a public figure, and this text has both strengths and weakness for that - it is by no means an exhaustive study of the field, nor does it try to be.
By the end, I could not help empathising, and resonating at times with Parson's capacity to suffer, her tenacity and eloquent powers of communication.
November 12, 2021
“According to the Australian Institute of Health and Welfare, approximately 50 per cent of the Australian population reports having a chronic illness. The term ‘chronic illness’ encompasses illnesses as varied as asthma and cancer, Alzheimer’s disease and diabetes, chronic fatigue syndrome, HIV/AIDS and a broad range of mental health conditions. Sometimes they have visible symptoms; often they don’t. Sometimes they can be debilitating or even fatal; sometimes they can be managed with little disruption to daily existence. The only thing they really have in common is that they cannot be cured. They are illnesses for life.”
It doesn’t matter what chronic illness you have (or even if you have no lived experience of it) there is so much to be gained from reading Unseen. Jacinta Parson’s ability to put into precise and, at times, poetic words what it feels like to live in the tricky in between world of ‘the sick and the well’ is to be extremely admired. So many times I found myself nodding in understanding and I’ve highlighted several passages that could have come straight out of my own thoughts or musings on navigating life with the burden of ill health always looming.
While the story obviously focuses largely on Jacinta’s own journey through her chronic illness of Crohn’s disease references are made and stories are shared about many other chronic illnesses and disabilities including many that me and some of my family members & friends combat on a daily basis, just like 1000s of Australians.
Thoroughly recommend.
March 28, 2021
Although mainly about Crohn's disease, which she has suffered from for many years, Jacinta Parson's book about chronic illness does look at the various illnesses that cause a long term change to life experience, and the psychological adaptation this causes.
It is a book born from her life experience, from the initial illness during her University years in student accommodation and through the serious periods when surgical treatments were required for her body to repair.
Readers should be aware that this is grim reading; Jacinta has had both severe physical experience of illness of a highly personal intimate nature but has also experienced variable psychological support from the medical and support staff. At times this appeared to be cruel and thoughtless, with no thought for the person. At others simply careless and impolite, lacking empathy.
She does show how having a chronic illness involves psychological adjustment to altered life choices, and how a life partner can be a huge part of success.
The mood of the book towards the end is much brighter so don't give up; it's worth the read!
As a former worker in adult rehabilitation I was disappointed at the lack of empathy of support workers, who seem unable to see Jacinta as a person with a condition who was doing her best. Luckily others were kinder and Jacinta refused to be stopped in her quest for the life she wanted to live.
It is a book born from her life experience, from the initial illness during her University years in student accommodation and through the serious periods when surgical treatments were required for her body to repair.
Readers should be aware that this is grim reading; Jacinta has had both severe physical experience of illness of a highly personal intimate nature but has also experienced variable psychological support from the medical and support staff. At times this appeared to be cruel and thoughtless, with no thought for the person. At others simply careless and impolite, lacking empathy.
She does show how having a chronic illness involves psychological adjustment to altered life choices, and how a life partner can be a huge part of success.
The mood of the book towards the end is much brighter so don't give up; it's worth the read!
As a former worker in adult rehabilitation I was disappointed at the lack of empathy of support workers, who seem unable to see Jacinta as a person with a condition who was doing her best. Luckily others were kinder and Jacinta refused to be stopped in her quest for the life she wanted to live.
This entire review has been hidden because of spoilers.
September 14, 2021
Jacinta Parsons is an extremely brave writer in my eyes. In Unseen she unashamedly describes what it's like to live with a chronic illness, illnesses and/or disabilities. She captures the common feelings and thoughts of someone who's constantly battling with their bodies that become foreign to them.
It was refreshing and cathartic to listen to someone who has had similar experiences due to having a chronic illness. From doctors dismissing your pain to lecturers telling you "you're not good enough to continue" at Uni, to the important but dangerous role of prescription drugs.
I recommend Unseen to everyone living with a chronic illness or know of someone whose life has been derailed by a chronic illness. In Unseen Jacinta gives you a real insight into peoples' lives and maybe forces society to become more accommodating.
It was refreshing and cathartic to listen to someone who has had similar experiences due to having a chronic illness. From doctors dismissing your pain to lecturers telling you "you're not good enough to continue" at Uni, to the important but dangerous role of prescription drugs.
I recommend Unseen to everyone living with a chronic illness or know of someone whose life has been derailed by a chronic illness. In Unseen Jacinta gives you a real insight into peoples' lives and maybe forces society to become more accommodating.
September 30, 2021
Took me a while to get through this but it really found a non fiction, memoir groove. I wanted to read it to understand an illness close to my family but what it gave me is perspective on chronic illness and disability on the whole. Loved the bit about why people keep illness secret...for lots of reasons but one in particular, friends and family start weighing in with judgements and advice. Someone with chronic illness has officially tried everything you can imagine and don't need you to tell them that what you put in your mouth is probably not helping your health!!! They already know that...do you monitor your own health in the same way?
December 22, 2020
Whether we realise it or not we all know someone with a chronic disease; one that is not going to get better. Be it arthritus, diabetes, heart disease, or a rarer disease like Crohn's, discussed in detail this book. If you want to learn more about how to support your friends or family with chronic conditions, read on.
Parsons writes beautifully, putting her condition into the broader context of how chronic diseases may be managed. Her personal odyssey is harrowing, but she has found the way through to managing her condition with the medical and personal support she needs.
Parsons writes beautifully, putting her condition into the broader context of how chronic diseases may be managed. Her personal odyssey is harrowing, but she has found the way through to managing her condition with the medical and personal support she needs.
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