You Don't Look Sick!: Living Well with Chronic Invisible Illness

by Steven S. Overman MD, Joy H. Selak

You Don't Look Sick chronicles one person's true-life story of illness and her physicians compassionate commentary as they journey through the four stages of chronic illness-Getting Sick, Being Sick, Grief and Acceptance and Living Well. The authors address such practical aspects as hiring a doctor, managing chronic pain, coping with grief and loss of function, winning battles with health and disability insurers, countering the social bias against the chronically ill, and recognizing the limitations of chronic illness care and charting a path for change and more. This warmhearted resource helps you focus on building a meaningful life as opposed to a life of frustration and fear.

This book is thoroughly revised and updated based upon feedback from readers of the first edition. The authors have added a new section on Grief and Acceptance, address the passage of the Affordable Health Care Act and Dr. Overman has added practical travel tips that bring organization and focus to each phase of the journey. Designed for people at all stages of the chronic illness journey, this book is also illuminating for caregivers and loved ones.

Genres: Health, Nonfiction, Medical, Self Help, Illness, Disability

199 pages, Kindle Edition

First published January 1, 2005

Reviews

[Tami · Rating 5 out of 5]

You don't look sick. Although our stories may vary, this is the one phrase that all of us living with Chronic Fatigue Syndrome, Fibromyalgia, and other invisible chronic illnesses have experienced, dread, and fear the most. It's hard enough to live in pain, fight through fibrofog, and deal with lost independence but this simply utterance makes us feel like we have to explain ourselves and frankly the explanation is never quite good enough. We leave the conversation with a feeling that getting sick was somehow our fault and that we aren't getting better because we aren't trying hard enough. Somehow we are flawed human beings.

You Don't Look Sick! is the experience of one woman (with the help of her doctor). Her story is very familiar. Like most of us, her journey just to get a diagnosis was long and painful. Getting appropriate help and coming to terms with the "Chronic" part of her condition contained even more challenges. Still, the author's illustrates that although it may not be possible to rid ourselves completely of this terror, we can bring ourselves to a place where we live well. A message we could all take heart in.

[Susan · Rating 2 out of 5]

1.5 stars. The parts of this book that I liked were written by the doctor. I actually had a difficult time even reading the parts written by the patient- author. Honestly, its a lot of "accepting your limitations" and "have a good team" platitudes, and I was completely underwhelmed and unimpressed with the lack of insight it provided considering all the glowing reviews. Frankly, the only positive I took away from this book was knowing that there are doctors working on difficult to define and treat chronic illnesses out there who respect their patients. Beyond that, most of the info can be found in pamphlets given out in rheumatology offices.

[Susan Daly · Rating 5 out of 5]

Dear Group,

This book is one of the best books I've read on "so-called" hidden illnesses. What I mean by this is that I, myself have a hidden illness where, unless you know me very well I look totally healthy.

I'm quite pleased that I don't have any diseases that would scare little children, but then again, it's quite distressing to hear that people who don't know a thing about you, except that someone has told them you are ill, saying things like "You look really good." When what they actually want to say is, "there's absolutely nothing wrong with your health and your not fooling me for one second."

This book helped me quite a bit because somedays I feel as if I'm really just being lazy, and other people, the ones who don't know me are quite sure I'm simply being lazy. Ah, if only that were true, I'd be so blessed. As it is, I am blessed that I'm not sicker than I am.

If you too have a "hidden illness", or know and care about some person who does, then do yourself, and your friend a huge favor and get this book. You will cry, and sometimes you may even laugh because it's like the author knows you and what goes on in your day to day life.

Ta for now,

Susan

[Sherri · Rating 5 out of 5]

I have read many, many books on living with a chronic illness. Every one has its own promises.... do what I say and you will be healed. Then, once you try the magic recipe that they suggest and you are not healed, you chalk it up to one more failure on your part. This is the last thing that anyone with a chronic illness needs... more guilt. This book is completely different. It is written by Joy Selak, who gives her views and experiences as a patient and sufferer of chronic illnesses, and by Dr Steven Overman, MD who counters with his professional opinions and advice. The book teaches that, as you do with losing a loved one, you must go through the same stages of grief over the loss of your life as you know it. It also teaches you that this illness you have does not have to sideline you, isolate you, or keep you from having a meaningful life.... it just may not be the life you previously had. This book was not only eye-opening, but also very uplifting. I would recommend anyone who has a chronic illness or is a caregiver or family member of someone with a chronic illness to take the time to read this.

[Jade · Rating 3 out of 5]

Not informative. The coping skills listed aren’t that great. I did not learn anything new in this or anything that isn’t common sense. One part says “to live like a child.” Sorry but both stupid and zero help. The only useful part was the resources listed at the very end.

[Angie · Rating 4 out of 5]

I think this is a good book on living with chronic illness for a lot of chronically ill people. This book was written by Joy and her rheumatologist Dr. Overman. Joy's chronic illnesses started in the 1980's steadily worsening over time. Joy has multiple chronic illnesses like most of us. Joy and Dr. Overman came up with the Four Phases of Invisible Chronic Illness. I found that most of them overlapped in one way or another. Good advice was given throughout the book a lot of it useful for everyone that is chronically ill. Joy has multiple chronic illnesses like most of us. Joy also felt that a holistic like type of approach was better for her which I had trouble understanding when Dr. Overman gave her medication that helped her but she felt a stigma against taking. I liked the part of the book about grief and acceptance of your illness. That you have to mourn for your old life like a death and find a new path that your body can handle. I feel stuck in many of the phases portrayed in this book but this one is the worst for me. I started to get sick in my late teens and it got progressively worse until I have become completely disabled. I mourn for a life I never got to have. That is something very hard to get past. A part of the book I do not agree with is that Joy believes that she has gotten sick for a reason and that her illnesses are a blessing. I would not wish what I have on my worst enemy and it feels very far from a blessing. This is a good read. I think it will be helpful for a lot of people. I do not think you have to believe in all of the book for it to be helpful to you. I will be rereading it this book. The second time through I think you can take even away more from a book of this kind.

[Rebecca Cook · Rating 5 out of 5]

Having struggled with an invisible illness for several years now, which completely took away my original life, I took to this book like a bee to honey! At the time I found this book, I knew no one else who had the struggles I had and had lost all of my friends. It was very reassuring that I was not the only one, and that I had not lost my mind. Since then I have be able to be hooked in to many others with ME/CFS/FM, including a very understanding and supportive doctor. However I still hear the "But you don't look sick" to which I want to reply "And you don't look stupid, or ignorant, or unfeeling (pick one)" but I haven't yet. I have reread the book several times, and recommend it to any who struggle with invisible illnesses of whatever variety to read this.

[Cliff M · Rating 4 out of 5]

Well done to Joy and Dr Overman for describing so well their approach to giving Joy back a life to be lived and enjoyed. It’s an approach that can help most people with chronic illness, and a story to which a great many people can relate (including friends and family of sufferers. Highly recommended.

[Mom Rainey · Rating 5 out of 5]

I read this book and felt for a moment the relief of recognizing your own life in anothers story & a release of guilt both long overdue. I was so happy to read this and to feel hopeful that i have already made an appointment to see Dr. Overman the Rheumatologist who co-authored it...:)

[Jackson · Rating 5 out of 5]

The advice is very sensible and the story inspiring. I can do something to make myself *feel* better. Not being at 100% does not mean a person flunks life altogether!

[Vannessa Anderson · Rating 4 out of 5]

A very good read for those in the beginning stage of their chronic illnesses because it will help: alleviate some fears, recognize symptoms and understand the doctor(s)syou will encounter.

[Sondra Retzlaff · Rating 5 out of 5]

I found this book so validating. Ask me how many times people have said those words to me, and yes, I know they mean well, but that statement--"You don't look sick!"--is exactly part of the frustration in living with chronic illness. People, sometimes even people very close to you, just don't necessarily get it, which again, I understand, because until you have walked in those shoes, it's hard to understand. And definitely hard to relate to. So, this was a great resource pointing out four phases one can experience (and strive toward, particularly since the final one is living well with chronic illness) whether or not we realize or acknowledge it. Joy and her doctor offered patient and doctor perspectives, and made me wish I have a doctor like Dr. Overman. It's never too late to advocate for a care provider who will do that. I think this book also could be insightful for people who are not experiencing chronic conditions directly, but know (or take care of) someone who is. I think she very successfully illustrated the sick person's perspective while still being gracious about how people who don't really understand react when they find out that person is sick.

[Savannah · Rating 2 out of 5]

While there were a few gems worthy of quoting, I found this book lacking. As someone who has been battling autoimmune disease for several years, it came off as almost flippant with advice that comes from a place of privilege. None of this was new information and it felt like a stream of platitudes and skin deep advice on living with chronic illness. Most of us do not have doctors who come to bat for us. We struggle to have doctors who will even communicate with each other, let alone us. The fight is tooth and nail because no one but us will come to our defense. We have to fight for every symptom to be taken seriously. We have to fight for every diagnosis. And for some of us, we have to fight to get/find better therapies. There is just very little true insight that comes from this read.

[Josephine Ensign · Rating 2 out of 5]

I wanted so much to like this book—and I did enjoy the parts that were written by Steven Overman, MD—but I found the writing by Joy Selak to be lacking in real self-insight. Her illness story comes across as entitled and rather infuriating. I couldn't help but be reminded of all the hard-working, kind, and desperately poor women I've had as patients who struggled with similar (and worse) autoimmune illnesses. They barely had access to primary health care, much less high-level specialty medical care and disability insurance.

[Allison Alexander · Rating 3 out of 5]

I appreciated the balance of chapters between patient and doctor, and I liked this book up until the point where the author wrote, "Avoid any medicine that will make you fat." She was making a point about staying in control of your life and that you don't have to cross lines you're not willing to cross (for her it was getting fat, for others it may be something else), but it was a very unnecessary comment, no doubt hurtful to some readers who feel shame because of their weight.

[Naomi · Rating 5 out of 5]

Some of these books give you all the cures "If you do ______ you will feel better"

This one not so much but honestly it's far more useful and less self blame at the end...

The author has multiple chronic illnesses and her doctor is the coauthor - using examples from her own life, she guides through phases of grieving and learning to live with chronic illness.

I recommend this to anyone with a chronic illness. It's very helpful.

[Barbara · Rating 4 out of 5]

A lot of this resonated with me. At first the top 10 list annoyed me with the inclusion of don't take medicine that makes you fat. However after reading the reasons behind each item. I realized this was just her line in the sand. For me it has become removing people from my life who treat me as less or believe I am not sick.

[mama housemouse · Rating 4 out of 5]

If I were newly diagnosed with a chronic illness, this would be a great reference. Having lived nearly a half-century with my chronic issues - this book was not as helpful as I wanted. Great book, not for me.

[Leisa Cadotte · Rating 4 out of 5]

Excellent book for the newly diagnosed. I remember reading this book and it helped me feel validated with my own chronic illnesses.

[Lindsay · Rating 5 out of 5]

(Note: I read the 2nd edition of this book.)

I chose to read this book because I have loved ones who live with chronic illness every day. I have also had to make a few modifications in my life as I learned to live with Endometriosis. Thankfully in my own situation, I have figured out how to best manage it so it doesn’t interfere with my daily life. However, I felt that for the benefit of others, this book could provide me with further insight.

In their book, You Don’t Look Sick! (second edition), Joy and Dr. Overman tell the story of the four different phases of living with a chronic illness (Getting Sick, Being Sick, Grief and Acceptance, and Living Well), from the unique and experienced perspectives of patient and physician. Living with a chronic (and invisible) illness, for many patients, often means that in addition to living with their illness, patients also have to go through the daunting task of convincing people that their experiences are, in fact, real. Sometimes this process involves seeking advice from many different doctors. Dr. Overman explains that it is necessary for the health care team to work together with a Team Captain or a Coach to facilitate treatment and care plans for the best interest of the patient. It is also important for the patient to plan an active role in their own care plan.

This book takes the reader through each stage of life with chronic illness with stories of physical and emotional struggles, physician’s perspectives, and careful and detailed instructions to help those currently coping with a chronic illness learn how to navigate through each of the phases in order to ultimately reach the final goal of learning to live well with an illness. Joy explains what has worked for her in order to both manage her illness and find ways to enjoy life and participate in her community. Through his caring and professional insight, Dr. Overman sounds like the chronic illness patient’s dream doctor! He offers valuable professional advice that readers of this book can use and implement in their personal lives to help maintain control of their medical situation.

At the back of the book, there are additional resources including answered questions about the changes resulting from the Affordable Care Act, a list of helpful medical resource websites and disease-specific associations, and finally discussion questions for patient support groups that walk through each section of the book.

I thought You Don’t Look Sick! was great! It was a great combination of both perspectives. This book was a very easy and quick read. I would rate their book 5 stars and recommend it for anyone who is personally suffering from chronic illness, or knows someone who is.

Note: A complimentary copy of this book was provided to me from Luxury Reading in exchange for an honest review. (Click to read my full review.)

[Leslie · Rating 5 out of 5]

Recommend to anyone living with a chronic illness. The patient and the doctor wrote the book together. There is a good bit of information, resources, advice, etc. available in this book. Real life insurance woes that shows readers that perseverance pays off in the end! Dealing with ignorance can make you look silly but tomorrow is another day. And sometimes you gotta bite the bullet (or swallow the pill) nag go to your h.s. reunion -- fatigue or no fatigue! I had a few writerly issues with the book but overall it's a great resource for someone just diagnosed with a chronic illness and/or that person's caregiver or even someone who has lived with illness for some time. At times, you feel as though the authors are just talking to you (very candid, relaxed) over coffee or tea... The whole patient-doctor book project is a great idea! I think the doctor's knowledge could have been put to use more at times, though, rather than often summarizing and providing refection. That part was good but I also appreciated his medical expertise when he offered it. His own experiences gave the book a unique prospective. I wanted to hear more about that and maybe how that informed how he practiced medicine, if at all. It touched on it briefly but I wanted to know what it felt like when he found out.What emotions did he experience? I actually wanted to hear a bit more from Him but then again I guess it is Joy's diagnosis he is discussing/treating.


Overall, it's a worthwhile read.

[Kim Overstreet · Rating 5 out of 5]

Well-written and easy to read, this is a book about coping with a chronic health condition. In alternating sections Joy Selak, a patient, and Steven Overman, a physician, discuss the Four Phases of Invisible Chronic Illness: Getting Sick, Being Sick, Grief and Acceptance, and Living Well.

I have lived with invisible chronic illness for 11 years. I wish I would have had this book at the start of my journey. I have read many books about my health condition, many of which promise a miracle cure with an exercise, a supplement, or a diet, which ultimately did not work for me. This guide does not dispense specific medical advice, but offers a glimpse into how to live, and indeed thrive, when you live with an ongoing medical condition. Outlook, understanding, and relationships are at the heart of the discussion. To hear Joy so eloquently describe many of my internal and external challenges and to know I am not alone in my experience brought tears to my eyes on a few occasions. (E.g. wondering what to say when people ask, "How are you?" in passing) This is a book I will keep and reread over the years when I find myself needing a bit of a boost. Highly recommended for those living with an invisible chronic illness as well as their caregivers and family members!

I received a complimentary copy of this book through Library Thing Early Reviewers. This is no way affected the content of my review.

[Ruby · Rating 5 out of 5]

This book gave me the solidarity I so desperately needed. Even though I have great family support, I have been feeling alone with my struggles with my illness, feeling absolute despair at the impact on my life. I needed to feel like I had an ally who got what I was going through and I found it in this book.

I have felt the yucky judgement and dismissal from the 'you don't look sick' brigade, who appear to assume that I am weak or indulgent. I have had a million quack remedies recommended by well-meaning people who simply don't understand why this is unhelpful. Joy is like the understanding friend who truly gets it. Dr Overman is like the dream doctor we all want. I think it was just great to read a book from someone who really understands what it's like. There wasn't much advice, it was more a book of support. Joy has done a wonderful job. I have highlighted passages throughout the book to read again in rough times. I really appreciate this book.

[Kate · Rating 2 out of 5]

Only useful thing was the top ten list for living well

Joys - make your own list

Take care of yourself first

Never never never give up (looking for treatments, advocating for yourself)

Learn to be honest about how you are feeling I am having a bad day today. Please be patient because I am doing my best I can.



Enroll in the school of whatever works (re treatments and medication, might be alternative )


Make friend with fatigue (learn what I can do, what I like to do, what and when to avoid activity, wen and how to rest, what triggers fatigue, use the limited energy on things that matter )

Live as a child
Don’t waste any emotional energy - no grudges long term neagatives, let it out and move on
Live in the moment

Step out of the box
Push yourself if it is worth it


Search for silver linings


Find a way to share your gifts


Be still

[Victoria · Rating 4 out of 5]

This was interesting enough and very short, barely 125 pages (+ additional resources). I got vastly more out of Joy's memoir-like chapters than I did Dr. Overman's, but that's to be expected in terms of what I was looking for, and YMMV.

I love the title, which is really what sold me on this book. 2/3 memoir, 1/6 overview of chronic illness from a medical perspective, 1/6 rant against how the American insurance and medical systems deal with chronic illness. Nothing too concrete to offer, but Joy does have a friendly approach to combining Western and holistic medicine.

[Tina · Rating 4 out of 5]

This is a useful book for people at almost any stage of coping with chronic illness. It is light, has some good ideas, and the partnership with the two writers, one with chronic illness, one a physician, works well. Does not espouse one type of modality or mindset over another - a relief - and is respectful of the reader.

[Claire Boynton · Rating 3 out of 5]

This book was interesting because it compared the experiences of a patient with her doctor. It covered the impact of chronic illness both from a medical / scientific and an emotional / social perspective and I found this really useful.

[Miken · Rating 4 out of 5]

I would recommend this not just to people with both invisible and rare chronic illnesses, but also to people who have a close family member/friend with chronic illness. Even though my problems are visible many things were very relatable.

[Cherie Kephart · Rating 4 out of 5]

As someone who suffers from a chronic illness, I found solace and comfort from this book. I understand this message and I know so many others do as well. Selak dares to reach out into the world, speak her truth, and give others, like me, hope and a sense that we are not alone.

[Tara · Rating 5 out of 5]

Brilliant book. It reflected how I was feeling and what I believed when I was dealing with my chronic illness. I would recommend this book to anyone.