What do you think?
Rate this book
Surviving and Thriving with an Invisible Chronic Illness: How to Stay Sane and Live One Step Ahead of Your Symptoms
“An important antidote to the dogmatic ‘kale and vitamins’ tone of most ‘self-help’ literature.” —Alexa Tsoulis-Reay, senior writer, New York magazinePopular blogger Ilana Jacqueline offers smart and savvy advice, humor, and practical tips for living with an invisible chronic illness.
Do you live with a chronic, debilitating, yet invisible condition? You may feel isolated, out of step, judged, lonely, or misunderstood—and that’s on top of dealing with the symptoms of your actual illness. Take heart. You are not alone, although sometimes it can feel that way.
Written by a blogger who suffers from an invisible chronic illness, Surviving and Thriving with an Invisible Chronic Illness offers peer-to-peer support to help you stay sane, be your own advocate, and get back to living your life. This compelling guide is written for anyone suffering with an illness no one can see—such as postural orthostatic tachycardia syndrome (POTS), chronic fatigue syndrome (CFS), fibromyalgia, multiple chemical sensitivity (MCS), Lyme disease, lupus, dysautonomia, or even multiple sclerosis (MP).
This book will tell you everything you need to know about living with a complicated, invisible condition—from how to balance sex, dating, and relationships to handling work and school with unavoidable absences. You’ll also learn to navigate judg-y or skeptical relatives and strangers and—most importantly—manage your medical care.
Suffering from a chronic illness doesn’t mean you can’t live an active, engaged life. This book will show you how.
Do you live with a chronic, debilitating, yet invisible condition? You may feel isolated, out of step, judged, lonely, or misunderstood—and that’s on top of dealing with the symptoms of your actual illness. Take heart. You are not alone, although sometimes it can feel that way.
Written by a blogger who suffers from an invisible chronic illness, Surviving and Thriving with an Invisible Chronic Illness offers peer-to-peer support to help you stay sane, be your own advocate, and get back to living your life. This compelling guide is written for anyone suffering with an illness no one can see—such as postural orthostatic tachycardia syndrome (POTS), chronic fatigue syndrome (CFS), fibromyalgia, multiple chemical sensitivity (MCS), Lyme disease, lupus, dysautonomia, or even multiple sclerosis (MP).
This book will tell you everything you need to know about living with a complicated, invisible condition—from how to balance sex, dating, and relationships to handling work and school with unavoidable absences. You’ll also learn to navigate judg-y or skeptical relatives and strangers and—most importantly—manage your medical care.
Suffering from a chronic illness doesn’t mean you can’t live an active, engaged life. This book will show you how.
210 pages, Kindle Edition
First published March 1, 2017
504 people are currently reading
1722 people want to read
About the author
Ilana Jacqueline
3 books60 followersIlana Jacqueline is a patient, an advocate, and the author of the books Surviving and Thriving with an Invisible Chronic Illness and Medical Gaslighting: How to Get the Care You Deserve in a System That Makes You Fight for Your Life. Ilana was diagnosed with hypogammaglobulinemia at age nineteen and has since devoted her career to patient advocacy and disease understanding. She is a Director of Influencer Relations at Health Union and advocacy strategist on Instagram and TikTok. You can learn more about her work on www.ilanajacqueline.com.
Ratings & Reviews
Friends & Following
Create a free account to discover what your friends think of this book!
Community Reviews
Displaying 1 - 30 of 137 reviews
April 24, 2023
Ilana Jacqueline, who is also a famous blogger, tells us how to deal with chronic illness to lead a happy, productive life through this book. The experiences that the author describes will certainly melt our hearts. The author doesn't stop after just mentioning chronic disease; she delves deeper and discusses about many other things that many people refuse to discuss. She even tells us the personal details about the dating and sexual life of people with chronic conditions. This is a must-read book if you are someone with a chronic illness or close to someone suffering from a chronic disease.
“Chronic illness isn't something you beat or fight. It isn't a race or lifelong quest to return to normalcy. You don't reverse, battle or scar with it. Chronic illness is something you outsmart. ”
—————————————————————————
You can also follow me on
Instagram ID - Dasfill | YouTube Channel ID - Dasfill | YouTube Health Channel ID - Dasfill - Health | YouTube Malayalam Channel ID - Dasfill - Malayalam | Twitter ID - Dasfill1 | Snapchat ID - Dasfill | Facebook ID - Dasfill | TikTok ID - Dasfill1
January 1, 2020
I know better than to read self-help books, but the opening paragraphs gave me hope. Darn it.
The good: a fast, easy read with some content that I could relate to. Chronic illness is an asshole, indeed.
The ok: if you're newly diagnosed and about to embark on a life of chronic illness, it's probably a decent way to get oriented (caveats noted at the end).
The bad: unchecked sanism and intellectual ableism, which is always disappointing when it's a fellow disabled person saying it plus some inaccurate or misleading information in parts (FMLA does cover chronic illness and SSDI is notoriously hard to get; her lack of experience here was clear).
I did find myself laughing in inappropriate places sometimes, because the author is so clearly an urban, upper-middle class, straight, cis white woman, and that framed the sort of advice she gave. If you're not part of this demographic, I wouldn't bother reading this, honestly.
The good: a fast, easy read with some content that I could relate to. Chronic illness is an asshole, indeed.
The ok: if you're newly diagnosed and about to embark on a life of chronic illness, it's probably a decent way to get oriented (caveats noted at the end).
The bad: unchecked sanism and intellectual ableism, which is always disappointing when it's a fellow disabled person saying it plus some inaccurate or misleading information in parts (FMLA does cover chronic illness and SSDI is notoriously hard to get; her lack of experience here was clear).
I did find myself laughing in inappropriate places sometimes, because the author is so clearly an urban, upper-middle class, straight, cis white woman, and that framed the sort of advice she gave. If you're not part of this demographic, I wouldn't bother reading this, honestly.
June 15, 2020
While I will most whole-heartedly agree that chronic illness is an asshole, I couldn't find much help from this self-help book. The author does write a successful blog, which I could see as bring a relatable resource for people newly diagnosed with an illness, and she does offer some encouragement, when speaking about life with chronic disease being about "managing expectations," while also being something we don't battle or fight or race. The author does believe we can outsmart chronic illness, though I disagree on that point; I think it is something we learn to dance with, sometimes slowly and sometimes taking a break, but we have to move along with our new partner, one which isn't going away for the rest of our lives. So we should get to know our partner better.
The true problems I have with this book are that she pushes psychological ideas that put all of the emotional work and responsibility onto us. We do have to accept our new situation and conditions that we have to change in our lives. But to say that we have to understand unkind words from friends and family doubting our pain or questioning our diagnoses are somehow out of love or care for us, doesn't seem just misguided, it is also hurtful. The author then goes through how we can do all of the emotional labor the appease these doubters who hurt us, to make them feel okay. Because, yes, that's what's important, that I use my limited energy to do the emotional work of someone who doubts my medical condition, or, as a friend (former) said to me, "don't you know how hard it is for me that you are sick?" Yes. I know it is, but I can't do all of the work for you to ease your emotional suffering when I have about 9 levels of my own to worry about. This books just makes it sound like worrying about ourselves and taking care of our emotional well-being is selfish. And I think sometimes we have to be.
I finally quit when she got to the guilt-ridden phrasing of you can't expect someone to love you until you love yourself first, when there is not only plenty of psychological research into how this is not true, but this is also hurtful and unnecessary. Once again chronically ill people are doing more heavy lifting and this time it is all their fault. There has been research that suggests emotional trauma and abuse can worsen or trigger chronic conditions. So the people who have been abused find it more difficult to love themselves are more likely to have chronic illness or chronic pain conditions, but now no one can love us.
Not so much help. The author's viewpoint seems very wrapped in being a mid to upper class white cis woman who doesn't understand how hard it is to qualify for SSDI or how to allow us to not bear the emotional weight of everyone around us while bearing our own pain as well.
The true problems I have with this book are that she pushes psychological ideas that put all of the emotional work and responsibility onto us. We do have to accept our new situation and conditions that we have to change in our lives. But to say that we have to understand unkind words from friends and family doubting our pain or questioning our diagnoses are somehow out of love or care for us, doesn't seem just misguided, it is also hurtful. The author then goes through how we can do all of the emotional labor the appease these doubters who hurt us, to make them feel okay. Because, yes, that's what's important, that I use my limited energy to do the emotional work of someone who doubts my medical condition, or, as a friend (former) said to me, "don't you know how hard it is for me that you are sick?" Yes. I know it is, but I can't do all of the work for you to ease your emotional suffering when I have about 9 levels of my own to worry about. This books just makes it sound like worrying about ourselves and taking care of our emotional well-being is selfish. And I think sometimes we have to be.
I finally quit when she got to the guilt-ridden phrasing of you can't expect someone to love you until you love yourself first, when there is not only plenty of psychological research into how this is not true, but this is also hurtful and unnecessary. Once again chronically ill people are doing more heavy lifting and this time it is all their fault. There has been research that suggests emotional trauma and abuse can worsen or trigger chronic conditions. So the people who have been abused find it more difficult to love themselves are more likely to have chronic illness or chronic pain conditions, but now no one can love us.
Not so much help. The author's viewpoint seems very wrapped in being a mid to upper class white cis woman who doesn't understand how hard it is to qualify for SSDI or how to allow us to not bear the emotional weight of everyone around us while bearing our own pain as well.
March 27, 2018
This was an absolutely amazing book! This story was a magnificent work of art!!! I was completely blown away with how much this story hit home! It's like the author knew everything that I needed to hear with my chronic invisible illnesses! As a person that battles fibromyalgia, rheumatoid arthritis, severe mental health issues and much more, I wake up crying in pain most days and am stuck in my bed from the inability to even walk at the age 29. I feel like giving up most days. I have lost many friends and many family members don't talk to me because of all of my problems but like the author I found solstice in blogging and other things. The author describes things that people go through perfectly! I literally highlighted 4/5s of this book because of how amazing it was! I also added so many notes that it was unbelievable!!! I found hope within the pages of this book. I guarantee you that this story is first class and I recommend it to anyone suffering any kind of invisible illness or any family of those who suffer! Hands down a five star read that I will buy for my family and friends, recommend to my manager at the bookstore I work at and will recommend to the blogosphere! I can't wait to see what this author comes out with next!!!! Just, WOW!
December 11, 2017
This is the book that everyone just diagnosed with a chronic illness NEEDS. There are tons of books with advice on medicines, therapies, vitamins, diet changes, etc. - but this is the first one I've read that addresses those big, scary issues: how can I cope with how my life changed? What can I do to help my friends and family understand what's going on? How can I get over the anger and guilt I feel when I can't do the things I used to? These are super important because, unlike most illnesses and injuries, chronic illness is NEVER GOING AWAY. So we have to learn to cope with not only the illness and havoc it wreaks on our bodies, but also the havoc it can wreak in our lives. This book is a great start.
*Thanks to NetGalley for the ARC, provided by the author and/or the publisher in exchange for an honest review.
*Thanks to NetGalley for the ARC, provided by the author and/or the publisher in exchange for an honest review.
April 19, 2018
Over the years I've worked with people who had an "invisible condition", and I've had employers who didn't believe them. I've heard people called lazy, that they're faking being sick to get out of work, and "they looked fine yesterday so I doubt anything's actually wrong."
This is the book to read if you want to prove them all wrong.
I personally don't suffer from any sort of medical condition (although I do have some mental health issues), however I do enjoy broadening my horizons and learning about these things. I think it's important for everyone to learn about these sort of things because you never know who you'll meet in life who does suffer an illness that you've never even considered before.
This is a really, really good read.
Ilana Jacqueline does an incredible job of explaining her own "invisible illnesses" and those of people she's interacted with in life. It's written as almost a self help book for people who live with these diseases, but I don't believe it's written solely for them.
For me, this book gave me insight into a world that I've only caught glimpses of, and has taught me how best to approach the subject with people who do live this way.
You’ve got to love yourself first if you’re going to expect someone new in your life to do the same.
Even though I don't suffer from any illness, I'm really really grateful that I read this. The self-help aspect of it mostly did not apply to my life, but there were still some aspects of it that are universal. All in all this was a very informative read and a topic that I think everyone needs to educate themselves on.
3.8//5 Stars 💜💜💜💜
I received this book from NetGalley in exchange for an honest review.
This is the book to read if you want to prove them all wrong.
I personally don't suffer from any sort of medical condition (although I do have some mental health issues), however I do enjoy broadening my horizons and learning about these things. I think it's important for everyone to learn about these sort of things because you never know who you'll meet in life who does suffer an illness that you've never even considered before.
This is a really, really good read.
Ilana Jacqueline does an incredible job of explaining her own "invisible illnesses" and those of people she's interacted with in life. It's written as almost a self help book for people who live with these diseases, but I don't believe it's written solely for them.
For me, this book gave me insight into a world that I've only caught glimpses of, and has taught me how best to approach the subject with people who do live this way.
You’ve got to love yourself first if you’re going to expect someone new in your life to do the same.
Even though I don't suffer from any illness, I'm really really grateful that I read this. The self-help aspect of it mostly did not apply to my life, but there were still some aspects of it that are universal. All in all this was a very informative read and a topic that I think everyone needs to educate themselves on.
3.8//5 Stars 💜💜💜💜
I received this book from NetGalley in exchange for an honest review.
December 4, 2017
As someone who has been accused of using her grandmother's handicap sticker, and been stared at using the motorized wheelchair at Wal-mart, this book struck home. The author is not a doctor, or a researcher or a well wisher. She has been through this, fighting in the trenches like the rest of us. My own illness is different from the author's, but it is sad to see how universal my experiences are.
This is a helpful guide for anyone with a chronic illness and it deals with it in a very realistic way. It talks about feelings I haven't seen addressed in other books, such as the stress of getting a diagnosis or when you finally do, the complicated mess of feelings that comes along with it. Reading this sort of felt like talking in a support group that I didn't know I needed. The author is blunt and honest, and if you are the loved one of someone with a chronic illness, this will likely put you in their head space and reveal some of the doubts, fears and irritants they may never be able to voice. I highly recommend it.
This is a helpful guide for anyone with a chronic illness and it deals with it in a very realistic way. It talks about feelings I haven't seen addressed in other books, such as the stress of getting a diagnosis or when you finally do, the complicated mess of feelings that comes along with it. Reading this sort of felt like talking in a support group that I didn't know I needed. The author is blunt and honest, and if you are the loved one of someone with a chronic illness, this will likely put you in their head space and reveal some of the doubts, fears and irritants they may never be able to voice. I highly recommend it.
January 8, 2018
Surviving and Thriving with an Invisible Chronic Illness: How to Stay Sane and Live One Step Ahead of Your Symptoms by Author Ilana Jacqueline is a well-written book for support and learning to cope with a chronic illness. It is written to encourage the reader to be proactive about learning all they can about the illness and symptoms. When I say "illness and symptoms", that is exactly what the author is writing about because you can be ill for years without receiving a correct diagnosis of your illness. The author also explains how disappointing it can be to finally get a diagnosis, but then there may not be a clear path to resolving the illness and symptoms.
As a personal experience with having three different autoimmune illnesses and all the varying symptoms which tag along with each one, I can verify what the author is relating. It took over six years for my diagnosis of the major illnesses.
This author has helped put into perspective the choices a person with a chronic illness can make to help deal with the inconveniences and daily aggravations. My rheumatologist told me I would find the handicap license for my car to be of great help as I aged with my illnesses. I would have debilitating flares even though you would never know of the pain and stiffness of my joints which would cause falling because I looked perfectly healthy!
Thank you, Ilana Jacqueline, for your insight and sharing information to encourage people to stay ahead of the many pitfalls of living with conditions which will not go away. Even if your friends or family do not fully understand or if they doubt your pain and discomfort, the author has tips for this too! The emotional consequences of invisible illness can be devastating, so learn all you can and find the peace you need for each day.
As a personal experience with having three different autoimmune illnesses and all the varying symptoms which tag along with each one, I can verify what the author is relating. It took over six years for my diagnosis of the major illnesses.
This author has helped put into perspective the choices a person with a chronic illness can make to help deal with the inconveniences and daily aggravations. My rheumatologist told me I would find the handicap license for my car to be of great help as I aged with my illnesses. I would have debilitating flares even though you would never know of the pain and stiffness of my joints which would cause falling because I looked perfectly healthy!
Thank you, Ilana Jacqueline, for your insight and sharing information to encourage people to stay ahead of the many pitfalls of living with conditions which will not go away. Even if your friends or family do not fully understand or if they doubt your pain and discomfort, the author has tips for this too! The emotional consequences of invisible illness can be devastating, so learn all you can and find the peace you need for each day.
June 29, 2021
This book was 30% helpful for me. It focused heavily on western medicine helpful info—I’m more holistic eastern Medicine inclined—and it really focused on more visible invisible illnesses. Ones that leave scars and marks and tubes in your body. Fibromyalgia doesn’t’ really have that—in my case—so a lot of the info was . . . Meaningless for me.
It also had a TON of cursing in it and the dating section—though some of her advice was helpful—was a . . . Non-Christian standpoint so I didn’t get much out of it.
Overall if you can handle reading through cursing and a little bit of sex talk, then I’d say give this a read. Just don’t expect the moon from it ;).
It also had a TON of cursing in it and the dating section—though some of her advice was helpful—was a . . . Non-Christian standpoint so I didn’t get much out of it.
Overall if you can handle reading through cursing and a little bit of sex talk, then I’d say give this a read. Just don’t expect the moon from it ;).
March 20, 2019
Helpful book to get someone recently diagnosed with a chronic illness, but it didn't tell me anything I didn't already know.
December 12, 2017
As someone who suffers with chronic illnesses this book was a must request!
Invisible diseases are the worst, they isolate sufferers who can find it difficult to explain to those who are unaffected, that just because their symptoms and pain cant be seen, that they are massively, hugely debilitating. So many suffer in silence, feel judged, shame, isolation, and feel misunderstood and unaccepted, and thats on top of the dreadful symptoms, pain and side effects so much medication can bring.
This book offers a little bit of comfort to those people, it makes you realise you aren't alone and offers some great advice on on living within your limits, dating, relationships, friendships, work and many other topics. The fact that it is written by someone who lives with two autoimmune diseases, who has experienced first hand the hell and the isolation chronic illness brings, a fellow fighter, makes it all the more engaging and relatable.
This book will appeal to sufferers and their loved ones alike.
Thank you to the author, publisher and Netgalley for allowing me to read in return for an honest review.
Invisible diseases are the worst, they isolate sufferers who can find it difficult to explain to those who are unaffected, that just because their symptoms and pain cant be seen, that they are massively, hugely debilitating. So many suffer in silence, feel judged, shame, isolation, and feel misunderstood and unaccepted, and thats on top of the dreadful symptoms, pain and side effects so much medication can bring.
This book offers a little bit of comfort to those people, it makes you realise you aren't alone and offers some great advice on on living within your limits, dating, relationships, friendships, work and many other topics. The fact that it is written by someone who lives with two autoimmune diseases, who has experienced first hand the hell and the isolation chronic illness brings, a fellow fighter, makes it all the more engaging and relatable.
This book will appeal to sufferers and their loved ones alike.
Thank you to the author, publisher and Netgalley for allowing me to read in return for an honest review.
October 24, 2024
Incredible. So informative, validating, and to the point. This book helped me process my chronic illness and start my journey to acceptance of my reality. I'm never going to be the same as I was before my surgery. My illness and symptoms are going to change and I can't fight it or stop that. I just need to adapt.
March 26, 2018
The author of this book lives with multiple chronic conditions and writes the Let's Feel Better blog. It would be a great resource for a young person just starting their journey with a chronic illness, but it also has things to offer for those of us who aren't new to the chronic life. You will find this a well-written and well put together book with resources, ideas, inspiration, and facts about living with chronic illness, the diagnosis process, disability, working or going to school with chronic illness, living alone with chronic illness, and so much more. There is a lot to chew on here, and I was impressed with Ilana Jacqueline's achievement. 4.5 stars.
I received an advanced copy of this book from Netgalley in exchange for my honest review.
I received an advanced copy of this book from Netgalley in exchange for my honest review.
March 25, 2018
Since becoming increasingly unwell with Dysautonomia I've been wishing there was some sort of guidebook or manual on how to cope with it and how to make sense of becoming chronically unwell. This book is it! Ilana writes in detail but also in an easy to read way. Covering everything from how to get the most out of a doctors appointment, living independently and how to tell others of your condition I wish I'd come across something like this sooner!
December 18, 2017
Surviving and Thriving with an Invisible Chronic Illness was an absolutely wonderful (and humorous) look into what it's like living with a chronic illness not everyone can see. I received a copy of this book in exchange for a honest review. This book offers not only ways to deal with the many questions but also reminds that people with chronic illness are not alone. I can honestly say that it is nearly 100% accurate as I have autoimmune disorders and deal with a lot of the same things the book mentions. I felt it was accurate and authentic. The book also touches on things like what SSI/SSD are, other support programs that may be available, how to advocate for yourself when no one else will and how to stop self-depreciation.
January 16, 2018
This book is an incredible resource for anyone dealing with a chronic illness, or for someone who loves a person with a chronic illness and would like a look inside what it's like. The author talks about everything from the realities of dealing with a chronic illness, relationships and dating, and the pain and frustration. However, this is not your typical self-help book. This is a journey with the author through her life's experiences and is perfect for the person who feels left behind and unseen due to their chronic illness. I would highly recommend this book to anyone who is looking to feel understood, or gain empathy for those of us who are walking this path.
February 7, 2018
I don't know any higher praise for a book than to say I cried in recognition while ready most of it. This is THE book I wish I had so many years ago.
If you have been newly diagnosed with any number of chronic and invisible illnesses, from cancer to diabetes, to mental illness, you will want to read this book. It focuses on the thoughts and emotions we experience with a chronic illness. You will *not* be lectured to or told to believe in something ridiculous. Instead, Ilana holds your hand and offers comfort and hope.
I wish I could give this book 6 stars! A truly remarkable and heartfelt book!
If you have been newly diagnosed with any number of chronic and invisible illnesses, from cancer to diabetes, to mental illness, you will want to read this book. It focuses on the thoughts and emotions we experience with a chronic illness. You will *not* be lectured to or told to believe in something ridiculous. Instead, Ilana holds your hand and offers comfort and hope.
I wish I could give this book 6 stars! A truly remarkable and heartfelt book!
January 26, 2018
"I've been living with a chronic illness since birth and throughout my journey I've found myself twisted by embarrassment about my disease and shamed about being unable to lead a normal life."
Yes. This is an author who intimately understands chronic illness and how it can impact day-to-day life. Ilana Jacqueline offers practical advice on how to accept your illness, combat feelings of worthlessness, and navigate work, relationships, and a social life. It's a valuable read for people who suffer from an invisible illness and feel alone or misunderstood.
Yes. This is an author who intimately understands chronic illness and how it can impact day-to-day life. Ilana Jacqueline offers practical advice on how to accept your illness, combat feelings of worthlessness, and navigate work, relationships, and a social life. It's a valuable read for people who suffer from an invisible illness and feel alone or misunderstood.
March 16, 2018
Disclaimer: I was given an ARC of "Surviving and Thriving with an Invisible Chronic Illness" through NetGalley in exchange for an honest, unbiased review.
This is the perfect guide book to help new patients survive and thrive with chronic illness! Well written and covers a wide range of road blocks we face throughout our lives. I even found helpful tips for myself, even though I've been living with chronic illness for 10+ years.
This is the perfect guide book to help new patients survive and thrive with chronic illness! Well written and covers a wide range of road blocks we face throughout our lives. I even found helpful tips for myself, even though I've been living with chronic illness for 10+ years.
December 14, 2017
Lots of good information in this book. I have quite a few family members and friends who have these. I really hope people who DON'T have invisible diseases read this book, it's enlightening. Pretty comprehensive book on diseases and they are all explained and covered very well.
I received a free Kindle copy of this book in exchange for a fair review from NetGalley
I received a free Kindle copy of this book in exchange for a fair review from NetGalley
April 27, 2025
“Surviving and Thriving with an Invisible Illness” by Ilana Jacqueline is more than just a guide; it’s a lifeline for anyone navigating the complex, often isolating world of chronic illness. From the moment I picked this book up, I felt like I was stepping into a rare space that understood me- a space that didn’t just acknowledge the struggle, but offered practical, empowering strategies for survival and growth.
What stands out most is Jacqueline’s ability to blend compassion with actionable advice. The book’s structure is designed to not only help you understand your illness better, but to also equip you with tools to stay ahead of your symptoms, keep your mental health in check, and rebuild your life on your own terms. It’s rare to find a resource that strikes the balance between understanding the emotional toll of an invisible illness and offering real-world strategies to thrive despite it.
By the time I finished, I felt like a different person. Where once I felt overwhelmed, uncertain, and isolated, the pages of this book provided a sense of clarity and empowerment. It taught me that while living with an invisible illness may require constant adaptation, it is possible to live well—not just survive. I’ve accompanied it with several books on nervous system regulation, and I truly wish I’d had these sooner. They’ve been more helpful than some of the doctors I’ve seen.
Jacqueline's writing is accessible, free from medical jargon, and packed with empathy and compassion. It’s clear that she’s speaking from both professional expertise and personal experience. She understands what it feels like to face the unpredictability of symptoms and the societal misunderstandings that often accompany invisible illnesses. She makes you feel seen, while showing you a way to move forward.
For anyone who’s felt like they’ve lost their sense of self to their illness or been consumed by the frustration of it all, “Surviving and Thriving with an Invisible Illness” offers not only hope, but a practical roadmap for reclaiming your life and your well-being. This book doesn’t just promise survival, it promises the possibility of a thriving existence, one step ahead of your symptoms, and more in control than you ever thought possible.
What stands out most is Jacqueline’s ability to blend compassion with actionable advice. The book’s structure is designed to not only help you understand your illness better, but to also equip you with tools to stay ahead of your symptoms, keep your mental health in check, and rebuild your life on your own terms. It’s rare to find a resource that strikes the balance between understanding the emotional toll of an invisible illness and offering real-world strategies to thrive despite it.
By the time I finished, I felt like a different person. Where once I felt overwhelmed, uncertain, and isolated, the pages of this book provided a sense of clarity and empowerment. It taught me that while living with an invisible illness may require constant adaptation, it is possible to live well—not just survive. I’ve accompanied it with several books on nervous system regulation, and I truly wish I’d had these sooner. They’ve been more helpful than some of the doctors I’ve seen.
Jacqueline's writing is accessible, free from medical jargon, and packed with empathy and compassion. It’s clear that she’s speaking from both professional expertise and personal experience. She understands what it feels like to face the unpredictability of symptoms and the societal misunderstandings that often accompany invisible illnesses. She makes you feel seen, while showing you a way to move forward.
For anyone who’s felt like they’ve lost their sense of self to their illness or been consumed by the frustration of it all, “Surviving and Thriving with an Invisible Illness” offers not only hope, but a practical roadmap for reclaiming your life and your well-being. This book doesn’t just promise survival, it promises the possibility of a thriving existence, one step ahead of your symptoms, and more in control than you ever thought possible.
February 11, 2019
I finished this book in two sittings. However, those sittings were a year apart 😂 Let's say I'm just not good with illness self help books. After 20+ years and so much advocating I figure there is nothing new they can tell me. The only reason I picked up this book is because it's Ilana's, and I've been following her amazing blog and insta stories for years. She's an amazing writer with a lot of wit and humor.
And let me tell you: I LEARNED SOMETHING NEW. The elevator talk is life changing! Who'd have thought? Not me... (insert dramatic music). This book is a true treasure for anyone who is quite new on being ill. In fact, it should be part of every "so you've got this weird new illness" care package. Also, those should be a thing. Doctors, take note.
There is so much info on the real questions: how to explain it quickly on an aunts birthday party without weirdness or pity stares. How to stand up for yourself when doctor #25 says it's in your head. How to deal with everyday problems and how can you date with a Damocles sword dangling above your head? Ilana actually has answers and presents them with much flair, even more humor and also with clear captions and headers (my brainfog thanks you), not shying away from important questions like who's gonna wash your bum and how to live on your own. There are also chapters on school and work but I skimmed those since those two have long gone from my life. Sure it's really helpful if you actually have some functionality left.
There are recources for the US along with instructions how to get the best info and patient support since we can agree on one thing; you are your own caretaker and you should be the best at it.
And let me tell you: I LEARNED SOMETHING NEW. The elevator talk is life changing! Who'd have thought? Not me... (insert dramatic music). This book is a true treasure for anyone who is quite new on being ill. In fact, it should be part of every "so you've got this weird new illness" care package. Also, those should be a thing. Doctors, take note.
There is so much info on the real questions: how to explain it quickly on an aunts birthday party without weirdness or pity stares. How to stand up for yourself when doctor #25 says it's in your head. How to deal with everyday problems and how can you date with a Damocles sword dangling above your head? Ilana actually has answers and presents them with much flair, even more humor and also with clear captions and headers (my brainfog thanks you), not shying away from important questions like who's gonna wash your bum and how to live on your own. There are also chapters on school and work but I skimmed those since those two have long gone from my life. Sure it's really helpful if you actually have some functionality left.
There are recources for the US along with instructions how to get the best info and patient support since we can agree on one thing; you are your own caretaker and you should be the best at it.
July 1, 2021
Listened to this one on audible, as it was sent to me by another dear friend fighting a chronic illness. It was excellent, especially to those fighting their own invisible battle of living with a chronic illness. I loved that it was narrated by the author and the suggestions she had to offer like creating 3 separate lists: one with medications, one with name, address, and birthdate, and another with emergency contacts in your life. That’s crucial for any new doctor consult or ER visit. I also enjoyed other warriors’ personal anecdotes about their struggles and how they overcame it with living despite it all. I loved the parts regarding acceptance of our bodies at our highest and lowest points and the importance of celebrating the small victories when we are experiencing a low pain day. The importance of hanging with friends inside and outside of the chronic illness support groups on days when we feel physically able, but the ability to surrender when we can’t in our weaker times. Ilana Jacqueline, the author, also provides insight on how to locate a doctor, and red flags (clear signs) on when it’s the right time to switch or change teams. After all, doctors are supposed to be on YOUR team and wear the same jersey as YOU. Lastly, it’s beautiful how she talks about kindness and speaking kindly to your body even though it’s hard to when it puts you through a lot on a daily basis. There’s a way to survive and thrive, hence the title, though these tremendous obstacles! How wonderful is this book!
September 12, 2018
Being a patient is not always easy. At least not when you struggle with invisible illness.
It's something I'm familiar with after struggling with chronic fatigue diseases in the last six years. It may not sound long, but it feels like a very long time, especially when you want a life with a job to go to, but you don't have a body to control. People with chronic diseases can also easily be misunderstood. Others think we are only about playing to be the victim, but it is not. At least not for everyone. It's just about being honest and trying to explain how it is. There is a difference between explaining what it is about and being a so called victim. Playing to be a victim is the worst expression I know about, because it's a very misunderstood phrase. There is a big difference in explaining how things are and fishing for sympathy. Nor am I a fan of others who always try to diagnose me or possibly others, just because one feels familiar with different symptoms. I only allow doctors and specialist to diagnose me, because many do not realize that there are many diseases, as you may not have heard of. So giving each other diagnosis through Internet or in real life is nasty. Some may have good intentions about it, but it is not a good thing to do. It has certainly become a thing in today's society to do so anway, which is a pity. I allow those who have the authority to do that, to give me diagnoses. I don't always trust them either, but at least they have paper on what they are doing. They are allowed to do it.
That is exactly what this book is about. How it's to be sick with invisible / chronic illness. You can look nice and fresh, but feel completely broken, something many struggle to understand when the disease does not appear on the outside. It's even difficult for ourselves with invisible disease to understand too. Lack of energy and other symptoms, we try to do our duties and other things, even if we need longer time than others to do it because of lack of energy and no, we're not just lazy. Being home without having a school or job to go to is no desirable situation, and illness is also not something you order. Anyone may be affected by some disease and be put off by it. It's a part of life and someone gets better sooner than others and others have to live with it. It is only harder with invisible diseases because many investigations are being done to confirm that there are no other things that is going on. It is very much back and forth.
Nor do I read so-called self-help books in the hope that it will change everything or anything at all. Occasionally, I read them to learn more about a subject and to find out more about some topics that I'm interested in. Other times, I read such books that sometimes are relevant to me, and maybe it will make you feel less alone.
Author Ilana Jaqueline also suffers from chronic fatigue and she also has the blog called Let's Feel Better. Perhaps not a trustworthy title, but she runs the blog to make others feel less alone when struggling with invisible ilness, just like with the book. In the book, she describes how she manages to get through good and bad days and how to get through various situations. Some days you have more energy than others. Even if you are sick, you should also try to keep in touch with others and meet people even if you don't feel like it. The best thing to do is just go with the flow. She also writes tips on how to handle school and work with illness, but do not know how much difference there is in USA and Norway when it comes to that. If it works equally well in both countries, 'cause in Norway, there may not be many organizations about it, such in the USA? She also provides tips about dating. If you should tell about your illness to others right away , or we should wait and other tips. She also writes with a humorous tone. Even though she uses herself as an exapmle in the book, she does not exaggerate or take over the entire story as most writers with disease books tend to do. What she writes about is easy to recognize, especially that there may be a lot of loneliness of being sick. Illness makes you feel isolated. However, what works for her does not necessarily work for everyone else, as people with fatigue diseases respond differently and have different levels of functioning. I don't think the book say much about that part.
Although not all the tips helps me, this is neverthless a nice book to have and use as a kind of reference when you may feel a bit down. It is easy to believe that others don't have the same symptoms and illness as you have, and reading such a book is a wake up call of the fact that many people are struggling and that there are different ways to deal with things. The author also gets a plus for using humor.
It's something I'm familiar with after struggling with chronic fatigue diseases in the last six years. It may not sound long, but it feels like a very long time, especially when you want a life with a job to go to, but you don't have a body to control. People with chronic diseases can also easily be misunderstood. Others think we are only about playing to be the victim, but it is not. At least not for everyone. It's just about being honest and trying to explain how it is. There is a difference between explaining what it is about and being a so called victim. Playing to be a victim is the worst expression I know about, because it's a very misunderstood phrase. There is a big difference in explaining how things are and fishing for sympathy. Nor am I a fan of others who always try to diagnose me or possibly others, just because one feels familiar with different symptoms. I only allow doctors and specialist to diagnose me, because many do not realize that there are many diseases, as you may not have heard of. So giving each other diagnosis through Internet or in real life is nasty. Some may have good intentions about it, but it is not a good thing to do. It has certainly become a thing in today's society to do so anway, which is a pity. I allow those who have the authority to do that, to give me diagnoses. I don't always trust them either, but at least they have paper on what they are doing. They are allowed to do it.
That is exactly what this book is about. How it's to be sick with invisible / chronic illness. You can look nice and fresh, but feel completely broken, something many struggle to understand when the disease does not appear on the outside. It's even difficult for ourselves with invisible disease to understand too. Lack of energy and other symptoms, we try to do our duties and other things, even if we need longer time than others to do it because of lack of energy and no, we're not just lazy. Being home without having a school or job to go to is no desirable situation, and illness is also not something you order. Anyone may be affected by some disease and be put off by it. It's a part of life and someone gets better sooner than others and others have to live with it. It is only harder with invisible diseases because many investigations are being done to confirm that there are no other things that is going on. It is very much back and forth.
Nor do I read so-called self-help books in the hope that it will change everything or anything at all. Occasionally, I read them to learn more about a subject and to find out more about some topics that I'm interested in. Other times, I read such books that sometimes are relevant to me, and maybe it will make you feel less alone.
Author Ilana Jaqueline also suffers from chronic fatigue and she also has the blog called Let's Feel Better. Perhaps not a trustworthy title, but she runs the blog to make others feel less alone when struggling with invisible ilness, just like with the book. In the book, she describes how she manages to get through good and bad days and how to get through various situations. Some days you have more energy than others. Even if you are sick, you should also try to keep in touch with others and meet people even if you don't feel like it. The best thing to do is just go with the flow. She also writes tips on how to handle school and work with illness, but do not know how much difference there is in USA and Norway when it comes to that. If it works equally well in both countries, 'cause in Norway, there may not be many organizations about it, such in the USA? She also provides tips about dating. If you should tell about your illness to others right away , or we should wait and other tips. She also writes with a humorous tone. Even though she uses herself as an exapmle in the book, she does not exaggerate or take over the entire story as most writers with disease books tend to do. What she writes about is easy to recognize, especially that there may be a lot of loneliness of being sick. Illness makes you feel isolated. However, what works for her does not necessarily work for everyone else, as people with fatigue diseases respond differently and have different levels of functioning. I don't think the book say much about that part.
Although not all the tips helps me, this is neverthless a nice book to have and use as a kind of reference when you may feel a bit down. It is easy to believe that others don't have the same symptoms and illness as you have, and reading such a book is a wake up call of the fact that many people are struggling and that there are different ways to deal with things. The author also gets a plus for using humor.
June 7, 2020
There are some really good parts and some eh parts. A heavy focus on how to manage a diagnosed illness that started in childhood. There's a bunch of tips that just don't apply to adult-onset and/or undiagnosed illnesses. The author just skims over those situations. At times, a touch too much positivity and I was the biggest optimist prior to falling ill. While having a positive attitude is helpful, allowing yourself to grieve and have bad days is just as important. I'm also frustrated with several fact-check errors, like the wrong name for SNAP and whatnot. The editor should revisit this copy and try again.
August 22, 2023
I'm about to enter year 6 of being in a constant battle of getting out of bed each day and I learned new things from this book. The points made about what to bring to dr's appointments were fantastic. This also felt like a friend who had chronic illness was talking to me from their lived experiences. It was super relatable.
3 stars instead of 4? Well... weirdly had intellectual ableism baked into it. Also wouldn't be very relevant if you were living outside of the US for most of the book.
Here's the biggest problem I have with the book and I will use Beth's review:
"The true problems I have with this book are that she pushes psychological ideas that put all of the emotional work and responsibility onto us. We do have to accept our new situation and conditions that we have to change in our lives. But to say that we have to understand unkind words from friends and family doubting our pain or questioning our diagnoses are somehow out of love or care for us, doesn't seem just misguided, it is also hurtful. The author then goes through how we can do all of the emotional labor the appease these doubters who hurt us, to make them feel okay."
All in all- chronic illnesses are VERY tricky to write about from an intersectional lens and, although there are problems with this book, I think most people could find value reading it if they are working within the US medical system. I would say to pick this one up
3 stars instead of 4? Well... weirdly had intellectual ableism baked into it. Also wouldn't be very relevant if you were living outside of the US for most of the book.
Here's the biggest problem I have with the book and I will use Beth's review:
"The true problems I have with this book are that she pushes psychological ideas that put all of the emotional work and responsibility onto us. We do have to accept our new situation and conditions that we have to change in our lives. But to say that we have to understand unkind words from friends and family doubting our pain or questioning our diagnoses are somehow out of love or care for us, doesn't seem just misguided, it is also hurtful. The author then goes through how we can do all of the emotional labor the appease these doubters who hurt us, to make them feel okay."
All in all- chronic illnesses are VERY tricky to write about from an intersectional lens and, although there are problems with this book, I think most people could find value reading it if they are working within the US medical system. I would say to pick this one up
April 9, 2018
This book is a great resource for individuals living with chronic illness. I think it is especially helpful for individuals newly diagnosed with an invisible illness, but I have had POTS for many years and still found Ilana's book very useful.
January 6, 2019
This book was excellent, and I can guarantee I'll come back to it regularly. It's a great resource to anyone living with a chronic illness. I let out a few tears, because it was so so relatable. I laughed out loud, because Ilana Jacqueline maintains a light style even when discussing the serious.
I highly recommend it. Even if this is information you know, even if this is information you repeat to yourself daily, it's an amazing reminder. Jacqueline has created an important guide to living in the best way you can, in spite of medical roadblocks.
I highly recommend it. Even if this is information you know, even if this is information you repeat to yourself daily, it's an amazing reminder. Jacqueline has created an important guide to living in the best way you can, in spite of medical roadblocks.
July 19, 2020
A friendly, straight-talking, not crunchy approach to dealing with invisible chronic illness in the real world - the chapter on being your own advocate is almost worth the whole book on it's own. Thank you, Ilana!
August 18, 2018
Outstanding
This is the most empowering book I have ever read about living with a chronic illness. My entire perspective has changed and don't feel like a victim of my disease. The strategies outlined in this book have shown me how to regain my life.
This is the most empowering book I have ever read about living with a chronic illness. My entire perspective has changed and don't feel like a victim of my disease. The strategies outlined in this book have shown me how to regain my life.
Displaying 1 - 30 of 137 reviews