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How to Do Life with a Chronic Illness
'I know that living with a chronic illness in this inaccessible world is tough. Trust me, I know. But you deserve to find peace and contentment just as much as anybody else. So welcome to your one-stop guide on how to make the most of life alongside your condition, in a way that truly works for you'. Rather than focusing on the medical side of long-term conditions, this book contains bespoke advice for the parts of everyday living that often go unspoken - from practical advice on friendships, dating and independent living, to more reflective guidance on rediscovering your identity and learning to self-advocate. Chronic illness affects everybody differently, but we all want to find joy where we can and make the most of what we have. This book exists to help you take accessible steps towards that goal and build a life that truly feels like yours. As well as useful advice, inside you'll also find real life experiences from diverse contributors, journal prompts and interactive features, and words of comfort and reassurance that frankly we don't hear enough.
208 pages, Paperback
Published April 18, 2024
24 people are currently reading
206 people want to read
About the author
Pippa Stacey
4 books93 followersPippa Stacey is a disabled writer, speaker, and communication consultant based in Yorkshire.
She is the author of University And Chronic Illness: A Survival Guide, and has also compiled and contributed to other non-fiction books in the disability sphere. Her award-winning blog, Life Of Pippa, documents her experiences of navigating life and chasing her ambitions while managing her chronic illness, and through sharing her authentic experiences she has grown a sizeable online community on social media.
Alongside her writing and media engagements, Pippa also works in communications consultancy in the charity sector. She has a particular interest in inclusive education and employment and how these things can be made more accessible for people with Energy Limiting Conditions like her own. For the last two years she has been named in the Shaw Trust's Disability Power 100 as one of the most influential disabled people in the UK, and hopes to use her platforms to help pave the way for people wanting to live a happy and fulfilling life alongside long-term illness.
In her free time, Pippa enjoys theatre, reading, travel, and blogging about her experiences at Life Of Pippa.
She is the author of University And Chronic Illness: A Survival Guide, and has also compiled and contributed to other non-fiction books in the disability sphere. Her award-winning blog, Life Of Pippa, documents her experiences of navigating life and chasing her ambitions while managing her chronic illness, and through sharing her authentic experiences she has grown a sizeable online community on social media.
Alongside her writing and media engagements, Pippa also works in communications consultancy in the charity sector. She has a particular interest in inclusive education and employment and how these things can be made more accessible for people with Energy Limiting Conditions like her own. For the last two years she has been named in the Shaw Trust's Disability Power 100 as one of the most influential disabled people in the UK, and hopes to use her platforms to help pave the way for people wanting to live a happy and fulfilling life alongside long-term illness.
In her free time, Pippa enjoys theatre, reading, travel, and blogging about her experiences at Life Of Pippa.
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Displaying 1 - 30 of 38 reviews
January 6, 2024
How to Do Life With a Chronic Illness is not a long book – 208 pages, some of which are journal prompts with blank space left (I am a bit allergic to those), or copy-pasted tweets/Instagram bits. But – as Stacey herself says at the end, "Bach when I was newly diagnosed with chronic illness, I was looking for a book exactly like this one." Yes. This, exactly.
I've been trying to Do Life with a chronic illness for over a decade – oh wow, time flies when you're surviving from one day to the next, and then suddenly all seems perfect until it doesn't. Most of what I've read here I already knew, but something special Pippa Stacey (I'm tempted to just say Pippa, because she sounds so friendly it feels like we know each other for ages) provides is kindness and understanding. That "you're not the only one" thing, but not just said in passing on a random social media platform. It feels genuine. Because it is.
How to Do Life With a Chronic Illness is a book for people with (mostly) physical conditions. The "mental health" section is about how to manage your brain while having a condition that's physical. Obviously, Stacey speaks from her own experience, not for the entire world, so I can't really say "…I was missing this or that." Nevertheless, I wish that there were quotes from people with disabling mental conditions.
I want to add something. Here's a quote: “Counselling and therapy are sometimes positioned as a treatment – implying that our symptoms are simply in our heads or psychosomatic.” As it happens, I am experiencing psychosomatic symptoms ranging from pain to finding myself at emergency cardiology ward – good luck faking that, doc. I also experienced medical gaslighting Stacey writes about, though. I have complex PTSD caused by many years of abuse. When my therapist was not available due to her own illness, I was introduced to a "trauma specialist" who, five minutes into our first meeting, asked "are you sure your memories are real?" I'm glad she was not my first therapist, because this is how you literally kill people, "trauma specialist."
"In a research study by Chronic Illness Inclusion,' participants overwhelmingly reported fatigue to be the most restricting, debilitating feature of their health condition. And yet in that very same study, they reported that fatigue was the feature they felt least qualified them to self-identify as a disabled person. That finding says it all." I would like to be excluded from this narrative, but I'm not. There's a lot of shame about having an invisible chronic illness – self-stigmatising. Everyone gets tired, right? I've been in this pickle for 11 years and still catch myself thinking – when I need half an hour to gather enough energy to undertake a trip to the bathroom – that I am simply being lazy when the house needs vacuuming. Again, here's where Stacey comes to the rescue. This is repeated a few times, but it needs to be: "you can do anything if you put your mind to it" or "if I can do it, you can, too" – even if the person saying it has exactly the same diagnosis – is bullshhhhhop. We do what we can. Sometimes we do what we can't, then inevitably pay for it later.
I recommend this book to everyone who either got diagnosed with a chronic illness recently, or is still struggling to accept certain realities. Our lives changed. Maybe forever, maybe not, but right now, they aren't what we'd like them to be. We can't control this reality. But we can make it easier for ourselves – by not being so hard on ourselves. Also, it's perfectly fine to tell people with Good Intentions to go duck themselves, although Stacey provides slightly more polite phrasing ;)
I've been trying to Do Life with a chronic illness for over a decade – oh wow, time flies when you're surviving from one day to the next, and then suddenly all seems perfect until it doesn't. Most of what I've read here I already knew, but something special Pippa Stacey (I'm tempted to just say Pippa, because she sounds so friendly it feels like we know each other for ages) provides is kindness and understanding. That "you're not the only one" thing, but not just said in passing on a random social media platform. It feels genuine. Because it is.
How to Do Life With a Chronic Illness is a book for people with (mostly) physical conditions. The "mental health" section is about how to manage your brain while having a condition that's physical. Obviously, Stacey speaks from her own experience, not for the entire world, so I can't really say "…I was missing this or that." Nevertheless, I wish that there were quotes from people with disabling mental conditions.
I want to add something. Here's a quote: “Counselling and therapy are sometimes positioned as a treatment – implying that our symptoms are simply in our heads or psychosomatic.” As it happens, I am experiencing psychosomatic symptoms ranging from pain to finding myself at emergency cardiology ward – good luck faking that, doc. I also experienced medical gaslighting Stacey writes about, though. I have complex PTSD caused by many years of abuse. When my therapist was not available due to her own illness, I was introduced to a "trauma specialist" who, five minutes into our first meeting, asked "are you sure your memories are real?" I'm glad she was not my first therapist, because this is how you literally kill people, "trauma specialist."
"In a research study by Chronic Illness Inclusion,' participants overwhelmingly reported fatigue to be the most restricting, debilitating feature of their health condition. And yet in that very same study, they reported that fatigue was the feature they felt least qualified them to self-identify as a disabled person. That finding says it all." I would like to be excluded from this narrative, but I'm not. There's a lot of shame about having an invisible chronic illness – self-stigmatising. Everyone gets tired, right? I've been in this pickle for 11 years and still catch myself thinking – when I need half an hour to gather enough energy to undertake a trip to the bathroom – that I am simply being lazy when the house needs vacuuming. Again, here's where Stacey comes to the rescue. This is repeated a few times, but it needs to be: "you can do anything if you put your mind to it" or "if I can do it, you can, too" – even if the person saying it has exactly the same diagnosis – is bullshhhhhop. We do what we can. Sometimes we do what we can't, then inevitably pay for it later.
I recommend this book to everyone who either got diagnosed with a chronic illness recently, or is still struggling to accept certain realities. Our lives changed. Maybe forever, maybe not, but right now, they aren't what we'd like them to be. We can't control this reality. But we can make it easier for ourselves – by not being so hard on ourselves. Also, it's perfectly fine to tell people with Good Intentions to go duck themselves, although Stacey provides slightly more polite phrasing ;)
February 29, 2024
Absolutely loved this book. It’s the kind of book I wish I'd had at the start of my own chronic illness journey.
I’d recommend this book to anyone living with a chronic illness but still wanting to find a way to live life. It’s full of helpful advice and practical tips on all aspects of life, broken down into easy-to-read sections. I related to so much of Pippa's experience and the thoughts and feelings she writes about throughout the book. I liked the use of journal prompts at the end of each chapter allowing you to reflect on what you’d read and how it applies to your own personal situation.
(Thank you to NetGalley and the publisher for the ARC!)
I’d recommend this book to anyone living with a chronic illness but still wanting to find a way to live life. It’s full of helpful advice and practical tips on all aspects of life, broken down into easy-to-read sections. I related to so much of Pippa's experience and the thoughts and feelings she writes about throughout the book. I liked the use of journal prompts at the end of each chapter allowing you to reflect on what you’d read and how it applies to your own personal situation.
(Thank you to NetGalley and the publisher for the ARC!)
April 16, 2024
4.5 stars rounded up.
"Resting is a glorious act of rebellion".
I found this book extremely relatable. I'm chronically ill (fatigue, pain, nausea, you name it) and I've had similar experiences to Pippa. I found myself highlighting parts that resonated with me, in the initial chapters especially. The book focuses primarily on existing with energy limiting conditions - navigating hobbies, friendships, relationships, and goals alongside managing the condition with pacing, aids, and self advocacy. There are useful tips and anecdotes that I think would be especially useful as a starting point - none of it was new information for me but would've been great to read earlier on my chronic illness life. I also find it helpful to read other people's experiences and relating to other chronically ill people to feel less alone, so I imagine any chronically ill person would find some benefit from this book.
This book also features journal prompts - some of which I tried, but some were more difficult (for example I don't have a daily routine at the minute nor have I for a while, so I couldn't engage as well with that section, but the section on identity prompted self reflection). Also interspersed in the book is sections written by others eg other chronically ill people, organisations, etc as well as links to external resources like Pippa's YouTube videos. These felt odd to me, almost like an advert, and more fitting for a blog post or online article or similar, and I didn't find them especially useful (note: I haven’t watched the videos yet). Otherwise, I thought the book was a great overview, and especially good for those exploring more about chronic illness or at a stage of change (for example, I first started looking for books, social media, and blogs when I had a big flare up and my daily life/symptoms changed, and this would've been great then, even after several years of being chronically ill). It would have some use to people who are not chronically ill themselves to understand the life, issues, and needs of a chronically ill person, but it is definitely targeted for chronically ill people to read, explore, learn, and (hopefully) regain parts of themselves they have lost to their illness.
Thank you to netgalley for the arc.
"Resting is a glorious act of rebellion".
I found this book extremely relatable. I'm chronically ill (fatigue, pain, nausea, you name it) and I've had similar experiences to Pippa. I found myself highlighting parts that resonated with me, in the initial chapters especially. The book focuses primarily on existing with energy limiting conditions - navigating hobbies, friendships, relationships, and goals alongside managing the condition with pacing, aids, and self advocacy. There are useful tips and anecdotes that I think would be especially useful as a starting point - none of it was new information for me but would've been great to read earlier on my chronic illness life. I also find it helpful to read other people's experiences and relating to other chronically ill people to feel less alone, so I imagine any chronically ill person would find some benefit from this book.
This book also features journal prompts - some of which I tried, but some were more difficult (for example I don't have a daily routine at the minute nor have I for a while, so I couldn't engage as well with that section, but the section on identity prompted self reflection). Also interspersed in the book is sections written by others eg other chronically ill people, organisations, etc as well as links to external resources like Pippa's YouTube videos. These felt odd to me, almost like an advert, and more fitting for a blog post or online article or similar, and I didn't find them especially useful (note: I haven’t watched the videos yet). Otherwise, I thought the book was a great overview, and especially good for those exploring more about chronic illness or at a stage of change (for example, I first started looking for books, social media, and blogs when I had a big flare up and my daily life/symptoms changed, and this would've been great then, even after several years of being chronically ill). It would have some use to people who are not chronically ill themselves to understand the life, issues, and needs of a chronically ill person, but it is definitely targeted for chronically ill people to read, explore, learn, and (hopefully) regain parts of themselves they have lost to their illness.
Thank you to netgalley for the arc.
May 29, 2024
i cannot express how useful this book was!!!
I really highly recommend this to any chronically ill people or anybody struggling with an energy limiting condition whether it’s neurological or not! 🧠
The lists and resource pages are so useful, especially with finding other disabled creators to follow and with giving tips to help manage our own lives better
As I’m in my own chronic illness flareup at the minute this was the perfect book to read as it placed a lot of emphasis on your own mental well-being and not overdoing yourself or pushing yourself beyond your limits for the gratification of impressing someone else
There’s a lot of emphasis on pacing and how we can accommodate ourselves a lot of conditions rather than focusing on the whens and whys and ifs… 👏🏻
⭐️ the list and bullet points were a really easy to manage layout and we’re very friendly for anybody with brain fog or slower processing
⭐️ journalling prompts at the end of each chapter were really fun and it was an interactive way to actually process the information in books and it was really unique !!
⭐️ the wide range of inclusivity of different conditions and ways that things may or may not manifest in the readers’ lives was really refreshing to see! Thought of who may be reading the book and the fact that not everybody responds the same way 🫶🏻
10/10 on this one!!! 💕
I really highly recommend this to any chronically ill people or anybody struggling with an energy limiting condition whether it’s neurological or not! 🧠
The lists and resource pages are so useful, especially with finding other disabled creators to follow and with giving tips to help manage our own lives better
As I’m in my own chronic illness flareup at the minute this was the perfect book to read as it placed a lot of emphasis on your own mental well-being and not overdoing yourself or pushing yourself beyond your limits for the gratification of impressing someone else
There’s a lot of emphasis on pacing and how we can accommodate ourselves a lot of conditions rather than focusing on the whens and whys and ifs… 👏🏻
⭐️ the list and bullet points were a really easy to manage layout and we’re very friendly for anybody with brain fog or slower processing
⭐️ journalling prompts at the end of each chapter were really fun and it was an interactive way to actually process the information in books and it was really unique !!
⭐️ the wide range of inclusivity of different conditions and ways that things may or may not manifest in the readers’ lives was really refreshing to see! Thought of who may be reading the book and the fact that not everybody responds the same way 🫶🏻
10/10 on this one!!! 💕
April 17, 2024
This is a really well put together introduction to living with a chronic illness. Written in an open, friendly tone, Stacey works through issues such as illness management, relationships, mental health and more. She acknowledges problematic attitudes within our ableist world with a good balance of frustration, hope for change and above all compassion for ourselves. Her advice about rethinking our life choices with kindness and self-care are written with friendliness and vulnerability. This is an excellent first stop for anyone who is struggling to manage their condition.
This honest review is given with thanks to NetGalley and the publisher for this book.
This honest review is given with thanks to NetGalley and the publisher for this book.
January 1, 2024
This book is absolutely wonderful. I was diagnosed with Multiple Sclerosis 5 years ago and I wish I had had this book then, because many of the things the author talks about are things I have had to struggle with and learn in those 5 years. But I still found some words of wisdom to apply to my current struggles, so I think it’s useful for any stage of the journey.
The author talks about both the emotional, physical, and daily life experiences people with a chronic illness can face. She supplements her own writing with passages from experts, YouTube videos, and journal prompts at the end of each chapter to encourage self/reflection. One chapter even includes Tweets from people within the community, offering their own input on the subject at hand, which brought more perspectives into the conversation. I appreciated that the author tried to make the book as accessible as possible and reach everyone in the way that they could best absorb information.
Some of the practical advice she gives is relevant only to people in the UK (disability rights, organizations to contact, resources available etc.) so those bits are less helpful to those of us in other countries. However, including everything from every country would be an impossible feat, so I mention it only as a caveat to other readers and not a complaint!
The chapter about hobbies was very timely for me, as I have been mourning the loss of the days when I would record music all day with various instruments, and feel like a bit of a failure for not doing that very often anymore. As she and others she quotes point out, hobbies with a lot of set up and take down can be very taxing! I appreciated the message that it isn’t failure to redefine your identity and find new things to make you happy.
The underlying message of the book is hope, which I think is so valuable to anyone who is facing a completely altered life thanks to their chronic illness. The author is generally trying to help the reader understand that happiness is still possible when your life has changed forever, though it may require a different approach. Sometimes “positivity” can be a dirty word to those with chronic illness because we may assume it will be of the toxic kind. But I think the author is trying to help us readers find achievable, realistic happiness and I do think that is so important.
I loved this book and want to buy a copy for every chronically ill friend I have once it comes out.
A favorite quote to finish the review: “Since being chronically ill, I have had to remould a life for myself out of the ashes of my old one.” I hope that all of us with chronic illnesses can learn to do this and be happier humans.
The author talks about both the emotional, physical, and daily life experiences people with a chronic illness can face. She supplements her own writing with passages from experts, YouTube videos, and journal prompts at the end of each chapter to encourage self/reflection. One chapter even includes Tweets from people within the community, offering their own input on the subject at hand, which brought more perspectives into the conversation. I appreciated that the author tried to make the book as accessible as possible and reach everyone in the way that they could best absorb information.
Some of the practical advice she gives is relevant only to people in the UK (disability rights, organizations to contact, resources available etc.) so those bits are less helpful to those of us in other countries. However, including everything from every country would be an impossible feat, so I mention it only as a caveat to other readers and not a complaint!
The chapter about hobbies was very timely for me, as I have been mourning the loss of the days when I would record music all day with various instruments, and feel like a bit of a failure for not doing that very often anymore. As she and others she quotes point out, hobbies with a lot of set up and take down can be very taxing! I appreciated the message that it isn’t failure to redefine your identity and find new things to make you happy.
The underlying message of the book is hope, which I think is so valuable to anyone who is facing a completely altered life thanks to their chronic illness. The author is generally trying to help the reader understand that happiness is still possible when your life has changed forever, though it may require a different approach. Sometimes “positivity” can be a dirty word to those with chronic illness because we may assume it will be of the toxic kind. But I think the author is trying to help us readers find achievable, realistic happiness and I do think that is so important.
I loved this book and want to buy a copy for every chronically ill friend I have once it comes out.
A favorite quote to finish the review: “Since being chronically ill, I have had to remould a life for myself out of the ashes of my old one.” I hope that all of us with chronic illnesses can learn to do this and be happier humans.
July 20, 2024
Originally posted on Just Geeking by as a part of repDISND 2024!
Content warnings:
Living with a chronic illness is complicated, and it has taken me decades to learn and consolidate tips and tricks that have helped me Do Life with my chronic illnesses. I’m not alone in this, and any resource that offered some insight into what I could expect and what was available for me would have been a huge help. That was the motivation behind Pippa Stacey’s latest book, How to Do Life with a Chronic Illness which I was grateful to receive a copy from the lovely people at Jessica Kingsley Publishers.
With the subtitle “Reclaim your identity, create independence, and find your way forward”, it might seem that Stacey is reaching quite far with the aims of this book. The dedication reads, “For anybody newly diagnosed with chronic illness. It may not feel like it right now, but there are so many amazing moments ahead of you”. That is the message that fills every page of this book, and some of you might be thinking, oh no, this isn’t for me, it’s way too perky. A book like this can very easily end up like that, and believe me, I’ve read them, but How to Do Life with a Chronic Illness has been carefully written to offer information and experience, not pretty words.
Stacey’s voice is honest, vulnerable and down to earth. As she relays extremely useful information, she backs it up with her anecdotes and her own experience, clearly subtitling these sections as ‘My experience’. I was impressed with the wide variety of information included, as well as the amount of interviews with guests. There’s even a part where Stacey opened up the floor to her Instagram followers, asking them to share what hobbies they found work for them as inspiration for readers. I thought that was a brilliant idea and showed just how wonderfully varied our community is.
‘Hobbies and Interests’ is sandwiched between ‘Rediscovering Your Identity’ and ‘Pacing and Condition Management’ in How to Do Life with a Chronic Illness. The way Stacey has arranged her chapters is great, leading each topic naturally into one that corresponds with it. She hasn’t shied away from the difficult topics, either. While she remains positive that people with chronic illnesses can do a lot of things, Stacey has lived through the difficult times. She has ME/CFS and candidly talks about developing the condition, how she tried to power through it and how it felt to realise her new normal.
Like Stacey, I have ME/CFS and have been in that position. I also have several other chronic illnesses, most of which I had before developing ME/CFS, while my situation was a bit different, we both had to struggle with learning to live with an energy-limiting condition. It took me a long time, and a great therapist, to get to the point where I felt like I knew who I was again. A book like How to Do Life with a Chronic Illness would have been a very powerful tool to have in my arsenal.
A book can’t stop medical gaslighting from happening, however, knowledge is power. Until I developed ME/CFS, I lived in a happy delusional bubble where I believed medical professionals helped you if you were sick. Oh, how I was wrong. Stacey’s self-advocacy chapter is a must-read for every chronically ill, disabled and neurodivergent person. It has great advice on how to make a complaint, including a fabulous draft email that you can use. This is a resource that I (sadly) know that I am going to use a lot.
As someone who struggles to use their hands to write I was grateful, and honestly, astonished, to find at the end of the introduction a wee note with a QR code and a URL to download the end-of-chapter journal prompts digitally! It was such a simple idea, and yet I’ve never seen it done before. While I skipped the journal prompts, I did look over them as I went, and they looked to be very thoughtfully put together. They will be a great help to someone who has just been diagnosed or who is struggling with their chronic illnesses.
My one small complaint about How to Do Life with a Chronic Illness is that although Stacey has done her best to make this a book that applies to all types of chronic illness, at times it does read more aimed at people with energy-limiting illnesses. That is to be expected, as Stacey only has her own experiences to go from, and the only reason I’m mentioning this is for other readers like myself who have multiple chronic health conditions. There are thousands of chronic health conditions, so do not expect this book to cover every situation.
Likewise, as someone who is quite far along in their chronic illness journey and feels confident in their identity, this book was not designed for people like me. That is not to say that it is not useful for more experienced people, there is a lot of useful information in this book, and some of it I only learned in recent years!
Also, keep in mind that Stacey is British, so information such as benefits is UK-related. This doesn’t mean non-UK readers will find How to Do Life with a Chronic Illness useless, however. The same thing occurred when I read Demystifying Disability by Emily Ladau (Ladau is American) and it is the book I recommend the most.
How to Do Life with a Chronic Illness by Pippa Stacey is a great addition to any chronically ill person’s bookshelf with resources for everyone.
----
Follow me for more book reviews that discuss disabled and neurodivergent representation!
♦ repDISND ♦ Join us every July to discuss disabled & neurodivergent representation!
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Content warnings:
Living with a chronic illness is complicated, and it has taken me decades to learn and consolidate tips and tricks that have helped me Do Life with my chronic illnesses. I’m not alone in this, and any resource that offered some insight into what I could expect and what was available for me would have been a huge help. That was the motivation behind Pippa Stacey’s latest book, How to Do Life with a Chronic Illness which I was grateful to receive a copy from the lovely people at Jessica Kingsley Publishers.
With the subtitle “Reclaim your identity, create independence, and find your way forward”, it might seem that Stacey is reaching quite far with the aims of this book. The dedication reads, “For anybody newly diagnosed with chronic illness. It may not feel like it right now, but there are so many amazing moments ahead of you”. That is the message that fills every page of this book, and some of you might be thinking, oh no, this isn’t for me, it’s way too perky. A book like this can very easily end up like that, and believe me, I’ve read them, but How to Do Life with a Chronic Illness has been carefully written to offer information and experience, not pretty words.
Stacey’s voice is honest, vulnerable and down to earth. As she relays extremely useful information, she backs it up with her anecdotes and her own experience, clearly subtitling these sections as ‘My experience’. I was impressed with the wide variety of information included, as well as the amount of interviews with guests. There’s even a part where Stacey opened up the floor to her Instagram followers, asking them to share what hobbies they found work for them as inspiration for readers. I thought that was a brilliant idea and showed just how wonderfully varied our community is.
‘Hobbies and Interests’ is sandwiched between ‘Rediscovering Your Identity’ and ‘Pacing and Condition Management’ in How to Do Life with a Chronic Illness. The way Stacey has arranged her chapters is great, leading each topic naturally into one that corresponds with it. She hasn’t shied away from the difficult topics, either. While she remains positive that people with chronic illnesses can do a lot of things, Stacey has lived through the difficult times. She has ME/CFS and candidly talks about developing the condition, how she tried to power through it and how it felt to realise her new normal.
Like Stacey, I have ME/CFS and have been in that position. I also have several other chronic illnesses, most of which I had before developing ME/CFS, while my situation was a bit different, we both had to struggle with learning to live with an energy-limiting condition. It took me a long time, and a great therapist, to get to the point where I felt like I knew who I was again. A book like How to Do Life with a Chronic Illness would have been a very powerful tool to have in my arsenal.
A book can’t stop medical gaslighting from happening, however, knowledge is power. Until I developed ME/CFS, I lived in a happy delusional bubble where I believed medical professionals helped you if you were sick. Oh, how I was wrong. Stacey’s self-advocacy chapter is a must-read for every chronically ill, disabled and neurodivergent person. It has great advice on how to make a complaint, including a fabulous draft email that you can use. This is a resource that I (sadly) know that I am going to use a lot.
As someone who struggles to use their hands to write I was grateful, and honestly, astonished, to find at the end of the introduction a wee note with a QR code and a URL to download the end-of-chapter journal prompts digitally! It was such a simple idea, and yet I’ve never seen it done before. While I skipped the journal prompts, I did look over them as I went, and they looked to be very thoughtfully put together. They will be a great help to someone who has just been diagnosed or who is struggling with their chronic illnesses.
My one small complaint about How to Do Life with a Chronic Illness is that although Stacey has done her best to make this a book that applies to all types of chronic illness, at times it does read more aimed at people with energy-limiting illnesses. That is to be expected, as Stacey only has her own experiences to go from, and the only reason I’m mentioning this is for other readers like myself who have multiple chronic health conditions. There are thousands of chronic health conditions, so do not expect this book to cover every situation.
Likewise, as someone who is quite far along in their chronic illness journey and feels confident in their identity, this book was not designed for people like me. That is not to say that it is not useful for more experienced people, there is a lot of useful information in this book, and some of it I only learned in recent years!
Also, keep in mind that Stacey is British, so information such as benefits is UK-related. This doesn’t mean non-UK readers will find How to Do Life with a Chronic Illness useless, however. The same thing occurred when I read Demystifying Disability by Emily Ladau (Ladau is American) and it is the book I recommend the most.
How to Do Life with a Chronic Illness by Pippa Stacey is a great addition to any chronically ill person’s bookshelf with resources for everyone.
----
Follow me for more book reviews that discuss disabled and neurodivergent representation!
♦ repDISND ♦ Join us every July to discuss disabled & neurodivergent representation!
BLOG | REVIEWS | REVIEW SCHEDULE | TWITTER | INSTAGRAM | PINTEREST |
February 4, 2024
In short, it's the book you need if you live with chronic fatigue - whether as a symptom, or a syndrome, it's useful to explore.
There are some useful journal prompts in the book, for those so inclined, but the best part for me are the ideas about adapting hobbies to suit particular ailments. I've been in touch with the UK Paraclimbing Collective, looked into a pottery wheel I could actually use, and other things. This book has been such an inspiration for action - so rich, and varied.
Throughout the reading, I've been prompted to think about things I otherwise hadn't (of course thermal wear is basically an Aid for me - why hadn't I seen that before?), and it's certainly something I'll refer back to, in future.
I do find the term 'non disabled' appears a lot, and I understand why - like 'non fiction' suggests fiction is the 'standard', this suggests disabled is the standard... and that's novel - but it's a double-negative I'm taking some time to get used to.
On the whole, though, it reads well, it's conversational, it's well-structured, and... I expect it's useful for most people with a chronic illness. Chronic Fatigue, as a side effect or syndrome, is such a common experience that I'd be surprised if anyone struggled to find something to take away from this book.
Thank you, very much, to NetGalley and Jessica Kingsley Publishers for the ARC.
There are some useful journal prompts in the book, for those so inclined, but the best part for me are the ideas about adapting hobbies to suit particular ailments. I've been in touch with the UK Paraclimbing Collective, looked into a pottery wheel I could actually use, and other things. This book has been such an inspiration for action - so rich, and varied.
Throughout the reading, I've been prompted to think about things I otherwise hadn't (of course thermal wear is basically an Aid for me - why hadn't I seen that before?), and it's certainly something I'll refer back to, in future.
I do find the term 'non disabled' appears a lot, and I understand why - like 'non fiction' suggests fiction is the 'standard', this suggests disabled is the standard... and that's novel - but it's a double-negative I'm taking some time to get used to.
On the whole, though, it reads well, it's conversational, it's well-structured, and... I expect it's useful for most people with a chronic illness. Chronic Fatigue, as a side effect or syndrome, is such a common experience that I'd be surprised if anyone struggled to find something to take away from this book.
Thank you, very much, to NetGalley and Jessica Kingsley Publishers for the ARC.
December 25, 2024
Pippa ran a webinar as part of a recent disability week and her positivity was so lovely. Her book is just the same.
I hadn't come across the term 'energy limiting condition' before. I also learned about hedonic adaptation which I found interesting.
Very easy to read but lots of practical ideas too.
I hadn't come across the term 'energy limiting condition' before. I also learned about hedonic adaptation which I found interesting.
Very easy to read but lots of practical ideas too.
April 18, 2024
I was very glad to be able to read this book as an ARC because it really spoke to me due to the title of the book.
As a person with a chronic disease myself, I thought this would be very interesting to read. And indeed it was.
I learned a lot, especially because of the additional forms in the book to evaluate your own part in the areas that are spoken about in the book. It gave a lot of insight and the tips were very convenient. Besides that, I could recognize a lot of examples which made me feel understood. And I think, with a book like this, that is a very important part of the story.
I would recommend reading this book to everyone dealing with a chronic illness and having difficulty with living with it. Maybe not everything will be something for you, but there sure are some useful things in it!
As a person with a chronic disease myself, I thought this would be very interesting to read. And indeed it was.
I learned a lot, especially because of the additional forms in the book to evaluate your own part in the areas that are spoken about in the book. It gave a lot of insight and the tips were very convenient. Besides that, I could recognize a lot of examples which made me feel understood. And I think, with a book like this, that is a very important part of the story.
I would recommend reading this book to everyone dealing with a chronic illness and having difficulty with living with it. Maybe not everything will be something for you, but there sure are some useful things in it!
July 31, 2024
A slight caveat to my review: the author is from the UK so there were some things that are not applicable to me as an American (A sunflower lanyard represents someone with an invisible disability!?!?). This is a great book especially for someone new-ish to chronic-illness. However, I'm not sure I would have been ready to listen and/or understand at the beginning of my journey.
Each chapter ends with journal prompts. Excellent!
Some of the many nuggets I appreciated for validation/reminders:
*My chronic illness isn't something I should have to squash down. There's no point in pretending it doesn't impact the person I am when, in reality, it influences every moment of my waking day.
*Rediscovering your identity in the face of chronic illness is not about creating a persona and trying to make yourself fit into that mold… When you have limited energy, the last thing you want to do is burn yourself out trying to be something you're not.
*For people who aren't chronically ill, it can be hard to understand that sometimes even when it looks as though you're doing nothing, it might still be taking everything you have to get through it, leaving no space for anything else.
*In some ways, pacing is an act of rebellion. It's looking at this hectic, bustling world head on, and having the courage to move at the pace that works for you instead.
*No matter what, other people's perceptions of your chronic illness do not overrule your lived experiences. You don't need anybody else's acceptance for your illness to be valid. You have the insight and autonomy to make the choices that are best for you, and you don't need to justify them to anybody. Your life and your happiness always rank above pacifying the curiosity of others.
*Your self-worth is not defined by your external accomplishments. It’s great to have goals and work towards the things that fuel you with purpose, but any success or failure you encounter along the way does not dictate your value as a human being. Meeting the expectations of others or being perceived as successful does not and should not come before your own happiness and wellbeing. You’re doing the best you can in less than ideal circumstances, and that alone is remarkable.
Each chapter ends with journal prompts. Excellent!
Some of the many nuggets I appreciated for validation/reminders:
*My chronic illness isn't something I should have to squash down. There's no point in pretending it doesn't impact the person I am when, in reality, it influences every moment of my waking day.
*Rediscovering your identity in the face of chronic illness is not about creating a persona and trying to make yourself fit into that mold… When you have limited energy, the last thing you want to do is burn yourself out trying to be something you're not.
*For people who aren't chronically ill, it can be hard to understand that sometimes even when it looks as though you're doing nothing, it might still be taking everything you have to get through it, leaving no space for anything else.
*In some ways, pacing is an act of rebellion. It's looking at this hectic, bustling world head on, and having the courage to move at the pace that works for you instead.
*No matter what, other people's perceptions of your chronic illness do not overrule your lived experiences. You don't need anybody else's acceptance for your illness to be valid. You have the insight and autonomy to make the choices that are best for you, and you don't need to justify them to anybody. Your life and your happiness always rank above pacifying the curiosity of others.
*Your self-worth is not defined by your external accomplishments. It’s great to have goals and work towards the things that fuel you with purpose, but any success or failure you encounter along the way does not dictate your value as a human being. Meeting the expectations of others or being perceived as successful does not and should not come before your own happiness and wellbeing. You’re doing the best you can in less than ideal circumstances, and that alone is remarkable.
January 28, 2024
How to Do Life with .a Chronic Illness by Pippa Stacey
I received an ARC of this book from NetGalley to read and give my honest opinion of.
i'm not exactly sure what I thought this book was going to be about, but it was both better than I hoped in some respects, and less than in others.
Part of the problem for me in reading this was the formating was so wonkey throught the book. Dropped letters, weird footnoting numbers that suddenly appeared, but not looking like footnote numbers I'm used to.
This book is written by someone who has a chronic illness, and recognizes that even those of us who have the same as she does, we do not all respond the same to treatment, or to what we can/cannot do. Pippa talkes about pacing and what it is, how we can use it to our advantage.
There are journal prompts at the end of each chapter, whick can be useful if that's your thing.
I would recommend this book to those interested in some fairly easy reading that doesn't make you feel like a failure for having a chronic illness.
I received an ARC of this book from NetGalley to read and give my honest opinion of.
i'm not exactly sure what I thought this book was going to be about, but it was both better than I hoped in some respects, and less than in others.
Part of the problem for me in reading this was the formating was so wonkey throught the book. Dropped letters, weird footnoting numbers that suddenly appeared, but not looking like footnote numbers I'm used to.
This book is written by someone who has a chronic illness, and recognizes that even those of us who have the same as she does, we do not all respond the same to treatment, or to what we can/cannot do. Pippa talkes about pacing and what it is, how we can use it to our advantage.
There are journal prompts at the end of each chapter, whick can be useful if that's your thing.
I would recommend this book to those interested in some fairly easy reading that doesn't make you feel like a failure for having a chronic illness.
Read
January 9, 2024This is a great and helpful book if you suffering from chronic illness of any kind and wondering how to navigate the new and scary world. The author highlights a number of different categories, such as socialization, hobbies, friendships, relationships and goals. There are also journal prompts, which I thought was a nice touch. It's a fairly short book, but packed with information. It is also very encouraging and makes someone with chronic illness feel not so alone. There are also links to accounts to follow, from those who are also on the same journey. I definitely will be following many of them, as I have chronic illness and it really helps to follow and interact with like minded people who are experiencing the same thing as you are. I really think this is a great guide for those who need a little help and encouragement, and those who may be new to this life and do not know where to begin.
Thank you NetGalley and Jessica Kingsley Publishers for the eARC of this book.
Thank you NetGalley and Jessica Kingsley Publishers for the eARC of this book.
January 15, 2024
Thank you to NetGalley and Jessica Kingsley Publishing for the ARC of this book.
At a time where I was really struggling with my chronic illnesses, this book brought me hope and peace. In reading the introduction alone, I had an overwhelming urge to shout “finally” and send this book to everyone who has a chronic illness. It seems as if I’ve been searching all my life for answers on how to ignore my illness so that I can live, but this book shows how to adapt your life around the illness. This book will help you to accept and believe that you are not broken or a failure because of your disability and it will help you shed the labels and pressures put upon you by the world, others, and even yourself.
This is a book that everyone with a chronic illness needs to read, and I am so glad it came to me when it did.
At a time where I was really struggling with my chronic illnesses, this book brought me hope and peace. In reading the introduction alone, I had an overwhelming urge to shout “finally” and send this book to everyone who has a chronic illness. It seems as if I’ve been searching all my life for answers on how to ignore my illness so that I can live, but this book shows how to adapt your life around the illness. This book will help you to accept and believe that you are not broken or a failure because of your disability and it will help you shed the labels and pressures put upon you by the world, others, and even yourself.
This is a book that everyone with a chronic illness needs to read, and I am so glad it came to me when it did.
February 16, 2024
Thoughts:
I received an advance review copy for free, and I am leaving this review voluntarily. Where was this book when I was first sick. Seriously, this book is amazing and answered so many of the questions I had when I first got sick before I was diagnosed and found the #NEISvois (which is also suggested as a community for support in the book). The journal prompts were great and I will definitely be coming back to them again in the future. I loved that it also mentioned things such as medical gaslighting and approaches to mobility aids and the stigma which I haven’t seen in disability books I’ve read before and really appreciated hearing about it from other people. I also appreciated that Pippa gave her own experiences after every chapter/section she had explained to see other experiences parallel or contrasting to my own.
I received an advance review copy for free, and I am leaving this review voluntarily. Where was this book when I was first sick. Seriously, this book is amazing and answered so many of the questions I had when I first got sick before I was diagnosed and found the #NEISvois (which is also suggested as a community for support in the book). The journal prompts were great and I will definitely be coming back to them again in the future. I loved that it also mentioned things such as medical gaslighting and approaches to mobility aids and the stigma which I haven’t seen in disability books I’ve read before and really appreciated hearing about it from other people. I also appreciated that Pippa gave her own experiences after every chapter/section she had explained to see other experiences parallel or contrasting to my own.
January 20, 2025
Brilliant.
This book gives you hope. It doesn’t give you a prescription on what to do and what not to do because as the author rightly points out, everyone with a chronic illness faces a unique situation. One person maybe mild, another very severe. One person may be able to work, another might only have the energy to sit up in bed.
Pippa looks at how to bring joy back into your life. From how to break down tasks to encouragement on finding the small everyday things that make you smile. There’s also hints and tips on how to make things more accessible from simple gadgets (a lap tray) to expensive mobility aids (power chair.)
But mostly, it’s her writing style and anecdotes of her life and what she’s learned along the way that make you realise you’re not alone (even if no one is experiencing this life exactly like you) and you do deserve happiness.
This book gives you hope. It doesn’t give you a prescription on what to do and what not to do because as the author rightly points out, everyone with a chronic illness faces a unique situation. One person maybe mild, another very severe. One person may be able to work, another might only have the energy to sit up in bed.
Pippa looks at how to bring joy back into your life. From how to break down tasks to encouragement on finding the small everyday things that make you smile. There’s also hints and tips on how to make things more accessible from simple gadgets (a lap tray) to expensive mobility aids (power chair.)
But mostly, it’s her writing style and anecdotes of her life and what she’s learned along the way that make you realise you’re not alone (even if no one is experiencing this life exactly like you) and you do deserve happiness.
January 19, 2024
I was given an opportunity to read this book by Jessica Kingsley Publishers and NetGalley. As one newly diagnosed with a chronic illness I was interested to read the author’s view on living with such illnesses and hoped to learn some additional information. I was pleased with the information the author offered, however some of it felt overstated. I was hoping this book would provide somewhat of a pick-me-up. I believe readers will gain some useful insights from this book if read with an open mind and without preconceived notions.
January 22, 2024
This book made me cry, that nasty sobbing sniffing type of crying. Why ? It is the first time in almost 20 years that I did not feel alone. Someone else actually felt the same as me, someone else understood.
I was diagnosed with M.E. (by a leading hospital consultant), I was actually told by a GP that M.E. stood for MElingerer and not only was I making myself ill, it was just a way to give up work and live off the state ( neither of which I did). This is the first time I have not felt alone, thank you for that gift.
I was diagnosed with M.E. (by a leading hospital consultant), I was actually told by a GP that M.E. stood for MElingerer and not only was I making myself ill, it was just a way to give up work and live off the state ( neither of which I did). This is the first time I have not felt alone, thank you for that gift.
February 18, 2024
Living with a chronic illness myself I was interested to discover some new tips from Pippa Stacey's new book. However, I found most of what she said is repeated in an abundance of other sources.
I would say though, that I liked her open conversations manner and her little stories were either funny or thought provoking. As an experienced chronic disease survivor I would highly recommend this book to anyone finding themselves on this journey as it explains everything in good, easily digested, detail and I can confirm her ideas really do help!
I would say though, that I liked her open conversations manner and her little stories were either funny or thought provoking. As an experienced chronic disease survivor I would highly recommend this book to anyone finding themselves on this journey as it explains everything in good, easily digested, detail and I can confirm her ideas really do help!
February 28, 2024
Such a practical book especially for someone who is new to chronic illness as they can feel overwhelmed by all that it entails. The stories of people with chronic illness were especially meaningful, realistic, yet hopeful and so were the journal prompts. What I enjoyed a lot was it wasn't one of those books that goes on and on about aches and pains that makes you feel more depressed with every page you're reading, the tone was friendly too. Wonderful book, am looking forward to reading the other one.
January 20, 2024
The kind of book I wish I’d had at the start of my chronic illness journey. Pippa has broken down the aspects of life into manageable chunks to read (perfect for my foggy brain) and everything is clear and easy to understand. I particularly liked the journal prompts too - I haven’t used them yet but have written them all down to come back to later.
(Thank you to NetGalley and the publisher for allowing me access to the advanced copy of this book!)
(Thank you to NetGalley and the publisher for allowing me access to the advanced copy of this book!)
February 26, 2024
What an excellent book!!
I wish this book was around when I was first diagnosed with M.E/CFS. There is so much info and advice in here. But it never feels like too much, or overwhelming. It is sorted into easy to digest chapters, with journal prompts at the end. I really liked the lists at the end of some of the chapters too. It was a good book to read from start to finish, but you could also dip in and out, or search and read certain sections as and when you need guidance.
Pippa Stacey - thank you for bringing some light onto a topic that doesn't get spoken about - let alone written about!
I wish this book was around when I was first diagnosed with M.E/CFS. There is so much info and advice in here. But it never feels like too much, or overwhelming. It is sorted into easy to digest chapters, with journal prompts at the end. I really liked the lists at the end of some of the chapters too. It was a good book to read from start to finish, but you could also dip in and out, or search and read certain sections as and when you need guidance.
Pippa Stacey - thank you for bringing some light onto a topic that doesn't get spoken about - let alone written about!
March 27, 2024
I received a complimentary copy of this book via Netgalley. Opinions expressed in this review are my own.
As someone who has been living with MS for almost 20 years, I found this book extremely helpful to remind me, that I'm not my my illness. I think this will be a tool for people who are just starting their journey with chronic illness and a reminder for those of us who are further in their journey.
As someone who has been living with MS for almost 20 years, I found this book extremely helpful to remind me, that I'm not my my illness. I think this will be a tool for people who are just starting their journey with chronic illness and a reminder for those of us who are further in their journey.
December 24, 2023
Thank you NetGalley and Jessica Kingsley Publishers for this eARC in exchange for an honest review.
This is a very accessible read for anyone dealing with chronic illness. The sections are short and the text is written simplisticly. There are many good tips in the book about managing life with various conditions, and the author adds some humor in as well.
This is a very accessible read for anyone dealing with chronic illness. The sections are short and the text is written simplisticly. There are many good tips in the book about managing life with various conditions, and the author adds some humor in as well.
December 24, 2023
As someone with chronic illness, this book is very meaningful to me. Super easy to get through for those dealing with fatigue. It feels like it comes from a realistic perspective, balancing how hard chronic illness is with the potential for hope. It's compassionate from the perspective of someone with ME/CFS and actually useful! Will definitely recommend to others.
January 20, 2025
well presented, with a good mix of anecdotes and info. I personally didn't find it v useful, but I have been unwell for a long time and it didn't hurt to remind myself of a few things. however, it would defo be a great resource for those recently diagnosed or who are beginning their chronic illness journeys
December 1, 2025
When I was new to chronic illness, I was looking for a book exactly like this one. I wanted lifestyle advice and energy friendly hacks, and I wanted to hear it from someone who had first hand experience.
Hobbies and interests.
Pacing and condition management.
Friendships
Dealing with stigma and changing attitudes
Mobility aids
Hobbies and interests.
Pacing and condition management.
Friendships
Dealing with stigma and changing attitudes
Mobility aids
May 1, 2024
"Resting is a glorious act of rebellion"
Pippa I'm a very proud pal, and very greatful to have been a wee part of it with the LUNA Team.
Little Amber needed a book just like this one when chronic illness came into my life, and I'm so glad it exists.
Pippa I'm a very proud pal, and very greatful to have been a wee part of it with the LUNA Team.
Little Amber needed a book just like this one when chronic illness came into my life, and I'm so glad it exists.
August 8, 2024
as someone recently diagnosed with disabilities I turned to this book with curiosity and passion but sadly was unimpressed despite the high ratings I saw. Its “fine” but vague and lacks anecdotal quotes and gripping experiences
May 5, 2024
I wish I could time travel so I could go back and give a copy of this to my newly-ill self.
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