Long Illness: A Practical Guide to Surviving, Healing, and Thriving

by Meghan Jobson, Juliet Morgan

From COVID-19 and autoimmune disease to chronic pain and inflammation, this new integrative approach and practical guide from two UCSF doctors is an essential guide to living with long illnesses. Having a long illness—from autoimmune disease to dysautonomia, long COVID to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to chronic pain or depression—can mean a long struggle to get adequate care. From explaining symptoms over and over again to doctors and family members to making sure you are receiving the correct diagnosis and treatment, having a long illness can be a fulltime job. And it’s a hard one.  

Drs. Meghan Jobson and Juliet Morgan specialize in treating long illness; from their work on the frontlines with long COVID, they know that all long illnesses share many of the same hallmarks. Using evidence-based integrative medicine, they have put together a program that legitimizes long illness and validates concerns where other physicians often dismiss them. In Long Illness , you’ll find an unparalleled, holistic approach to healing, with valuable information    Recovery is a process, not always a destination. This book will help you build your recovery tool kit, reclaim your identity, manage your symptoms, and become empowered to get the care team you deserve.  

Genres: Health, Nonfiction, Self Help, Disability, Medicine

368 pages, Hardcover

Published May 9, 2023

Reviews

[Jaime · Rating 5 out of 5]

This is a book that EVERY healthcare provider needs to read! As a nurse practitioner who works in the field of neurology I can’t even tell you how many patients I see each week that are dealing with a chronic illness and have been unable to find healthcare providers (Physicians, Therapists, Mid-level providers, nurses) that LISTEN to them, BELIEVE them, and then try to HELP them. Chronic illness is not a myth. Disorders that don’t have lab markers or diagnostic tests to PROVE existence are very real and often some of the hardest illnesses to treat. As healthcare professionals we are taught - over and over - identify the illness and treat to cure the illness. Chronic illnesses are often systemic syndrome type illnesses with overlapping symptoms impacting multiple body systems. Treatment is not always aimed at “curing” but rather treating the symptoms and helping the patient maintain their baseline level of functioning for as long as possible. Some symptoms are VERY hard to treat and require a team of professionals working together, communicating with each other, and involving the patient as a valuable member of their own healthcare team. This team approach is often very difficult to establish and maintain. We often forget that patients are the expert in their own health, this is one reason I always ask my patients “what do you think is going on” and often times the patient helps to identify difficult conditions. I also think that we as healthcare professionals are often very afraid to admit “we don’t know something” or “we are not sure about why symptoms are occurring” - This is often viewed as a failure, so instead patients get labeled as having “psychosomatic symptoms” and they are told their symptoms aren’t real and/or there is nothing to be treated. So this book is very refreshing as it gives new ways of understanding and helping the patients who are otherwise often written off as malingering or depressed.

The authors explore different treatment strategies for common chronic conditions including lifestyle and dietary changes that are helpful. I honestly think this book should be added to core curriculum in medical and nursing schools - it could help the treatment of future patients.

5 Stars ⭐️⭐️⭐️⭐️⭐️

📚Thank you for providing a review copy. This review is freely given and based on this readers understanding and interpretation of the content in this book. No money was paid for this review. 🦄

[Diane · Rating 2 out of 5]

This book has nothing groundbreaking in it. There’s a lot of focus on mindfulness, food and movement. Nothing wrong with that but this book neglects the people who are experiencing post exertional malaise and are extremely fatigued. Leaving this out of the book does a disservice to many people as they will try and do all the things in the book and feel even worse than they did before.

[Tara Konkel · Rating 5 out of 5]

This is the book we have all needed! Even if we don’t have long covid personally I bet someone we know does. This book can help us all understand what’s going on in our bodies post covid. I highly recommend!

[Regina Kurandina · Rating 3 out of 5]

On the surface it seems like a really solid and wholesome book for anyone with long illness. However, the deeper you dig the more issues seem to arise. My greatest criticisms is lack of citations. They're "available per request" I struggle reading a book that constantly talks about how the recommendations are based on research without the research explicitly shown. My next critique is how so many of the things they recommend seems to be the thing to make it all better. "Studies show exercise will help with (insert a million different conditions)" its unlikely that there is clear research that shows aignificant correlations between one thing and a million different vatiaes. Its juat unlikely or its bad science. Finally, the amount they focus on nutrition is disappointing. To say you're not recommending a diet but then lead readers into an exercise that keeps track of everything they've eaten? Many recommendations and exercises pertaining to food are big red flags for me. I know many of them will be triggering for folks with EDs. Some of the studies mentioned sound extremely familiar to the ones that have been debunked.

[Cavak · Rating 4 out of 5]

Although Long Illness is primarily written for a North American perspective and includes broad strokes, they are important strokes to consider when it comes to treating health. Not just for long illnesses, but in general. I like how the authors recommend all types of treatments that are noted to be beneficial in evaluated studies. Encouraging readers to challenge whatever an insurance company representative first says to them is also a delight to read.

The most distressing part of the book was "If you don't have health insurance, no excuses: get it. You have no reason to go without it." Because the hurdles of medical insurance market is so polarizing and discouraging in North America that it's often intimidating to even try for people who struggle to afford it. I think that section in particular suffered the most in the broad strokes approach. However well meaning the sentiment is for creating a health care team.

Overall, this book is a brief and empowering companion to have when faced with intimidating diagnoses that goes beyond the tried-and-true exercise and change your eating habits advice. Most often, each nurse, specialist, etc. are multitasking in their head that sometimes they may neglect to mention alternatives or listen to personal concerns of their patients. It's okay, we're human.

Most people who are alive will likely face something written in Long Illness, so it doesn't hurt to look into it as a self-directed helper. The only bit I think could have been strengthened would be specific advice or concerns for caregivers who can't necessarily feel or take notice of all the subtle changes within a person's body. Perhaps worthy of another future book?

I received the book for free through Goodreads Giveaways.

[Jess | dapper.reads · Rating 4 out of 5]

I feel like, especially these days, long illness has become synonymous with long covid - and while long covid is a long illness, this book places it’s focus on the in general long illness (or chronic illness or whatever else you want to call it). We get common symptoms of long illness along with questions for us to ponder or ask our doctor, all kinds of different things to try with a focus on an approach that isn’t strictly medication and I appreciate that.

I also enjoy that many times the authors mention to just skip to what you need - the book will always be there to go back to if you need other things. This is helpful as it is quite an info dump and if I was reading this with the intention of using it to help (rather than as the arc it is) it would be incredibly overwhelming to read through everything in here to sort out what applies to me. The chapter titles are straightforward and to the point and each chapter breaks down the symptom medically and then talks about it in layman’s terms followed by potential solutions and a reminder to consult your doctor before starting new treatments.

I feel like this is responsibly written, well researched and personable. I definitely believe this could be a useful resource for long illness sufferers.

Thanks to both Hachette Books and NetGalley for the advanced reader copies!

[Darcia Helle · Rating 5 out of 5]

You’re not crazy; you’re sick.

If that statement resonates, then Long Illness is the book for you.

The term “long illness” has hit the mainstream with the wave of covid long-haulers, but the phenomenon isn’t new. Otherwise known as invisible illness, the umbrella term covers the spectrum of chronic illnesses that are misunderstood and/or not understood by both general society and medical professionals.

I love the way this book is written and presented. The authors offer compassion, insight, information, and resources, all in easy-to-understand language. The book’s layout is well put together, making it easy to jump to various sections for relevant reading and referencing.

Another thing I love is that at no time do the authors get pushy or preachy. This isn’t a book designed to sway you, convince you, or sell you anything. It’s a book meant to offer guidance, to make you feel seen and understood. The authors don’t claim to have a cure-all for whatever ails you. No false promises, but maybe relief on the horizon.

I’m many decades into living with long illness, and I can tell you that this book is a unicorn. I wish all doctors would read it.

*I received a free copy from Hachette Go.*

[Leslie McKee · Rating 4 out of 5]

This is a wonderful book for anyone living with a chronic illness (or for those who have a loved one with a chronic illness). For years, these patients have been written off by providers who fail to see the patient as the expert of their own body. That's not the case with Jobson and Morgan. They discuss many common symptoms and various ways to address them. Some sections were a bit more vague than others, but it's a well-rounded introductory book for someone with a chronic illness. Other sections include lifestyle changes, diet, and long-term solutions. It's clear that the book is well-researched, and numerous statistics and studies are referenced. There are also journaling prompts that many readers may find helpful.

Disclaimer: I received a complimentary copy, but I wasn't required to leave a positive review./i>

[Crimson · Rating 4 out of 5]

Thank you NetGalley and Hachette Books for this eARC in exchange for an honest review.

It was refreshing to see a book written by practitioners who see the patient as an expert of their own body rather than practitioners who gaslight medically or dismiss the patient. The authors detailed many different ways to handle the most common symptoms of chronic illness, including some holistic and some biomedical, which was very helpful. I do think the section on dysautonomia was too vague and inaccurate at times, as someone who suffers from and has read many books on the subject. The section on long term solutions and lifestyle changes was very useful. The section on dietary plans was extremely detailed and informative.

[Carla · Rating 4 out of 5]

💭Thoughts:
I’m always drawn to medical books because of my job as a nurse. I found Long Illness to be a very interesting and thought provoking book. The book is broken down into easy to follow chapters, covering many different topics. Each chapter also includes journal prompts. The authors also encourage readers to jump around and find the chapters that most pertain to their situation.

Overall, I found this book to be well written and encouraging for those that suffer from long illnesses. I do however think that all health conscious people could learn tips from these two healthcare professionals.

[Tara Tuttle · Rating 5 out of 5]

Many doctors miss the mark by simply checking the boxes off surrounded by red tape. Patients are stuck with improper diagnoses and a new pill to take. Long Illness opens the door of hope to a different approach. One where you will finally feel heard, cared for, and understood. This book is a must read for anyone suffering with chronic illnesses, or those who are just tried of getting the run around to dead end roads. Hope and healing await. Get a copy to give to a friend, cause this is one you’ll want to keep, but won’t be able to hold back from sharing with those you love.

[Jennifer Holloway Jones · Rating 4 out of 5]

I felt that the authors that created this guide were really in touch with the needs of the community of people that live with these illnesses. This book was not preachy as a lot of books like this tend to be and offered a variety of methods to improve quality of life. The journaling exercises will be helpful for people that are just beginning this journey. I personally have multiple long illnesses and was impressed with the level of understanding and support. Thanks for the ARC, NetGalley.

[Kristen Winsor · Rating 5 out of 5]

This is well written and well organized, and has a plethora of practical information for those struggling with long illness. From providing more information regarding causes and symptoms to various ways to manage such symptoms, this is an essential! As a physician myself, I found myself learning new techniques and strategies!

[Theresa · Rating 5 out of 5]

I am so proud and appreciative of Dr. Jobson and Dr. Morgan for sharing their knowledge and experiences. There is a LOT to learn in this book. I am now a better primary care provider, friend, and family member to the people I know living through long illness.

[Kea4 · Rating 3 out of 5]

Very good overview. Makes a patient take things into their own hands. Also points out that things like arthritis, and migraine ec are long-term illnesses.

https://theworldisabookandiamitsreade...

[McKenzy Hupke · Rating 5 out of 5]

10/5 stars. So amazing and NECESSARY for any handling, or want to understand Long/Chronic Illness more. Therapists should STOCK this book for patients and Cancer communities should give this out. I am so lucky to own this to revisit and write and just use as much as I need.

[Katy Sims · Rating 5 out of 5]

Great book that covers a variety of medical, psychological, and physical interventions for a very complex issue.

[Adam · Rating 5 out of 5]

An excellent book for long illness sufferers, caregivers, and family members.

[Lee Woodruff · Rating 5 out of 5]

Everyone should read this book because at some point in time, someone we know, love and possibly us, will be confronted with the challenges of a long illness.

[Marlene · Rating 5 out of 5]

This brought together everything I have been learning piecemeal over the last couple of years. It is a helpful reminder and an extremely validating resource to have on your nightstand.

[Mariko · Rating 5 out of 5]

A helpful and comprehensive overview of types of long illness and treatments. If you’re a health nut, you’ll probably be familiar with a lot of the information.

[Deb Lewis · Rating 4 out of 5]

After struggling for over a year to find a diagnosis to an unknown illness that not only has made me feel sick but has devastated my self-esteem, my belief in allelopathic medicine, my identity and my mental health, Jobson gently and knowledgeably helped me find legitimacy and a solid path forward. I've spent a lot of money on traditional diagnostic and lab tests as well as alternative treatments, diets and herbs. All this desperation has left me scattered and unsure which way to proceed. Long Illness clarifies all the options with research-based evidence and simplified my search with concrete solutions.

If I have to admit I have a long illness, this is the book I want to guide me.

[Corrica · Rating 5 out of 5]

A must-read for anyone living with a long illness (chronic illness). Especially those with long Covid will find this helpful. The author shared stories, statistics, studies, facts, tips, advice, journaling prompts, and so much more that aid someone who is new to the long/chronic illness life. I recommend all doctors read this to understand better what their patients experience. Additionally, this book may provide insight if you or a loved one has been struggling post-Covid.