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Confessions of Butterflies: Hidden Truths of Living in Pain
I belong to a secret society; a quiet community filled with some of the strongest, toughest, and most compassionate people in the world. Until recently, we have suffered in silence, our voices snuffed out by the stigmas and assumptions of a culture programmed to believe only what they can see. I am young and I have fibromyalgia. Millions live with chronic pain, but not everyone suffers through their younger years with it. We work, go to school, raise our kids, run our businesses and attempt to maintain some semblance of a social life, while enduring relentless, hopeless, unforgiving pain and fatigue that we try our best to minimize because we have to. We have to push through it, often without any help, understanding or support. We are the voices of chronic pain and this book is our butterfly effect, our story, without holding back. This is an honest and candid window into our world. The stories shared here are all real, collected from pain warriors who are tired of living a secret life. These are the truths we are ashamed to speak of because they are ugly, they are raw, and sharing isn’t easy when you’ve been conditioned to believe you shouldn’t. If you are lucky enough to live without relentless pain, I hope this book helps you to be more understanding, compassionate and empathetic to those in your life who do suffer. For my fellow butterflies, I hope you find comfort and realize your struggles and pain are both real and shared.
71 pages, Paperback
Published April 18, 2018
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Displaying 1 - 17 of 17 reviews
July 23, 2020
TW: Suicide mention
This book is about living with chronic pain, told from the perspective of people with fibromyalgia specifically but as someone with chronic pain for different reasons (and was born with said reasons-vacterl association-there is no such thing as too young for chronic pain) I still found a LOT to relate to. So many experiences i've also had, so many of the same feelings. If you have chronic pain, you will likely find a lot to relate to in these pages. If you do not have chronic pain, i'd highly recommend picking up this book to understand those of us that do a bit better, please listen to us.
It's real, raw and honest.
The guilt, feeling like a burden, constantly apologizing when it isn't our fault, wanting to die simply to end the suffering and pain, the exhaustion that is so much more than "normal tired", the depression. The not being believed, even and especially, by doctors.
It talks about being young and in chronic pain. When you imagine someone in chronic pain, you probably don't imagine anyone under the age of 50. Personally, I was born into my chronic pain. Let that sink in. It is getting worse as I get older (i'm speaking for myself only) however I do not know what a second without pain is like. I've had chronic pain since I was BORN. AS. A. BABY. There is NO such thing as too young!! Please, we need to end that stigma of "too young".
How much Dr's just ignore us, refuse to listen, bounce us around, we become jaded and stop trying. There have been multiple times I know I should've went to the ER, but at that point it's like "why bother, will they even listen this time?" and hoping this would be the final time, and to be completely honest, feeling disappointed each time it wasn't the final time. How much longer of this can I take? It's been 31 long painful years (i'm 31).
Quote
"We used to be afraid of the "S" word. If someone used it, all hell would break loose. People would panic, lose their minds with fear. After a while, after we became comfortable with one another, we began using the "S" word openly and honestly.
Sometimes, I want to die.
Sometimes, suicide feels like my only option.
Sometimes, I wish the pain would just end.
That doesn't mean we are suicidal. It's not a threat and it's certainly not a cry for attention. It's a part of our disease. It is a side effect of never ending pain and fatigue. Doctors tell us our pain is actually depression.
Well, doc, if you experienced pain and fatigue and the rest of the symptoms we do every single day with no relief, I bet you'd be a bit depressed, too.
"Sometimes, the want to make it stop gets so bad. Not because I want to die, no, it's because it hurts too much to live. But I can't do that. Not to my kids. So I pull it together and drive my pain deeper." - Sarah R.
End Quote
The disease being fibromyalgia of course but I related so so hard to this as someone with chronic pain.
Quote
Remember the worst pain you've ever felt? Maybe a car accident or broken bones?
Now imagine feeling that every day for the rest of your life. Then imagine that no one believes you so no one will help you.
The pain keeps you from participating in life and you watch friends and family carry on, pain-free, without you. Would you be a ball of sunshine?
So when we talk about suicide, we aren't talking about ending our life. We are talking about ending our pain and suffering. There is a difference.
Listen to us, be there for us and, most of all, let us speak.
End Quote
I am a chronic pain warrior. I am strong. And I am tired. I just want us to be heard. To be listened to. This isn't a hopeless book. It's just real and honest. It's also short (only about 60 pages) and on kindle unlimited if you have it.
This book is about living with chronic pain, told from the perspective of people with fibromyalgia specifically but as someone with chronic pain for different reasons (and was born with said reasons-vacterl association-there is no such thing as too young for chronic pain) I still found a LOT to relate to. So many experiences i've also had, so many of the same feelings. If you have chronic pain, you will likely find a lot to relate to in these pages. If you do not have chronic pain, i'd highly recommend picking up this book to understand those of us that do a bit better, please listen to us.
It's real, raw and honest.
The guilt, feeling like a burden, constantly apologizing when it isn't our fault, wanting to die simply to end the suffering and pain, the exhaustion that is so much more than "normal tired", the depression. The not being believed, even and especially, by doctors.
It talks about being young and in chronic pain. When you imagine someone in chronic pain, you probably don't imagine anyone under the age of 50. Personally, I was born into my chronic pain. Let that sink in. It is getting worse as I get older (i'm speaking for myself only) however I do not know what a second without pain is like. I've had chronic pain since I was BORN. AS. A. BABY. There is NO such thing as too young!! Please, we need to end that stigma of "too young".
How much Dr's just ignore us, refuse to listen, bounce us around, we become jaded and stop trying. There have been multiple times I know I should've went to the ER, but at that point it's like "why bother, will they even listen this time?" and hoping this would be the final time, and to be completely honest, feeling disappointed each time it wasn't the final time. How much longer of this can I take? It's been 31 long painful years (i'm 31).
Quote
"We used to be afraid of the "S" word. If someone used it, all hell would break loose. People would panic, lose their minds with fear. After a while, after we became comfortable with one another, we began using the "S" word openly and honestly.
Sometimes, I want to die.
Sometimes, suicide feels like my only option.
Sometimes, I wish the pain would just end.
That doesn't mean we are suicidal. It's not a threat and it's certainly not a cry for attention. It's a part of our disease. It is a side effect of never ending pain and fatigue. Doctors tell us our pain is actually depression.
Well, doc, if you experienced pain and fatigue and the rest of the symptoms we do every single day with no relief, I bet you'd be a bit depressed, too.
"Sometimes, the want to make it stop gets so bad. Not because I want to die, no, it's because it hurts too much to live. But I can't do that. Not to my kids. So I pull it together and drive my pain deeper." - Sarah R.
End Quote
The disease being fibromyalgia of course but I related so so hard to this as someone with chronic pain.
Quote
Remember the worst pain you've ever felt? Maybe a car accident or broken bones?
Now imagine feeling that every day for the rest of your life. Then imagine that no one believes you so no one will help you.
The pain keeps you from participating in life and you watch friends and family carry on, pain-free, without you. Would you be a ball of sunshine?
So when we talk about suicide, we aren't talking about ending our life. We are talking about ending our pain and suffering. There is a difference.
Listen to us, be there for us and, most of all, let us speak.
End Quote
I am a chronic pain warrior. I am strong. And I am tired. I just want us to be heard. To be listened to. This isn't a hopeless book. It's just real and honest. It's also short (only about 60 pages) and on kindle unlimited if you have it.
April 15, 2018
A true look at chronic pain
Joanna does an amazing job of weaving examples and quotes into her story. I hurt along with her and feel braver after reading her story. It's truely eye opening into chronic pain survivors and helps those who live with someone with chronic pain a way to veiw inside their head.
Joanna does an amazing job of weaving examples and quotes into her story. I hurt along with her and feel braver after reading her story. It's truely eye opening into chronic pain survivors and helps those who live with someone with chronic pain a way to veiw inside their head.
January 5, 2019
No one understands unless they're living it. Dwyer has written a book of the perfect length for this topic. It covers all the perils, pitfalls, struggles and disappointments without being repetitive.
April 15, 2018
A constant Voice of Strength for the butterflies
Thank you Joanna for this amazing Book! I hope to share this unique view with my friends and family soon. I am even more appreciative that I get to enjoy your strength every day. You have truly been life changing for me. I do hope you'll keep writing. We do need your voice more now than ever. 💜💜💜
Thank you Joanna for this amazing Book! I hope to share this unique view with my friends and family soon. I am even more appreciative that I get to enjoy your strength every day. You have truly been life changing for me. I do hope you'll keep writing. We do need your voice more now than ever. 💜💜💜
April 19, 2018
This is a great book that shows what it’s really like to live with Fibromyalgia. It was a hard read at times, especially as one living with this illness, because it truly lays bare many of the truths that so many of us have become used to hiding. I felt that the title was quite apt; reading the confessions of other Fibro Fighters like me really felt like having our darkest secrets brought to light.
It was a welcomed experience though, as speaking these truths is a liberating experience in itself. I found myself wishing that everyone I know would read this book so that they might finally understand what I’m going through. Sometimes I imagine giving books like this to someone with post its on relevant pages that say “this is me” – this book felt like I would need to put that post it on every page; in the sections about marriage and children (being single myself) I felt like I wanted to stick post its that said “this is what I’m afraid of”.
As I read every statement, I felt as though I could have said them myself – many of them I have said in the past. This book gave some very poignant descriptions of what the pain is like and accurate explanations of the frustrations that we face on a daily basis. What I really loved is that Joanna Dwyer even addressed the reasons we keep these thoughts and feelings secret.
It is not an altogether bleak outlook though. Amid the raw confessions of what we face on a daily basis, there is an overwhelming sense of love and acceptance. This is written by someone who knows what we’re going through – she experiences it herself – and who fights for a better life, refuses to give up hope and acknowledges the blessings that can come with this illness, such as the friends we meet through support groups.
For fellow butterflies, this book offers solidarity and that sense of being part of a larger community; we are not alone, there are other people like us. For those who do not live with chronic pain, I truly believe that this book can help one to gain a deeper understanding and become more empathetic; helping friends and loved ones to support us.
It was a welcomed experience though, as speaking these truths is a liberating experience in itself. I found myself wishing that everyone I know would read this book so that they might finally understand what I’m going through. Sometimes I imagine giving books like this to someone with post its on relevant pages that say “this is me” – this book felt like I would need to put that post it on every page; in the sections about marriage and children (being single myself) I felt like I wanted to stick post its that said “this is what I’m afraid of”.
As I read every statement, I felt as though I could have said them myself – many of them I have said in the past. This book gave some very poignant descriptions of what the pain is like and accurate explanations of the frustrations that we face on a daily basis. What I really loved is that Joanna Dwyer even addressed the reasons we keep these thoughts and feelings secret.
It is not an altogether bleak outlook though. Amid the raw confessions of what we face on a daily basis, there is an overwhelming sense of love and acceptance. This is written by someone who knows what we’re going through – she experiences it herself – and who fights for a better life, refuses to give up hope and acknowledges the blessings that can come with this illness, such as the friends we meet through support groups.
For fellow butterflies, this book offers solidarity and that sense of being part of a larger community; we are not alone, there are other people like us. For those who do not live with chronic pain, I truly believe that this book can help one to gain a deeper understanding and become more empathetic; helping friends and loved ones to support us.
June 1, 2019
It felt like someone bearing their soul
This title felt like a monologue or speech about a very personal and heavy subject in the writers heart. The is a plea to be understood and helpful motivation for others in similar situations. If you are in a similar situation or have a friend or loved one going through this please take an hour or two out of your day and give this a read.
This title felt like a monologue or speech about a very personal and heavy subject in the writers heart. The is a plea to be understood and helpful motivation for others in similar situations. If you are in a similar situation or have a friend or loved one going through this please take an hour or two out of your day and give this a read.
January 11, 2020
Stay with it
While initially reading this book I kept thinking the author was preaching to the choir. I have fibromyalgia..CFS..whatever. I haven’t picked up a book about it for many years. They really depress me, and some of those support groups plunge me into the depths of despair. It’s a very misunderstood diagnosis and there are still m.d.’s who think it’s a drug seekers illness, emotional in nature, yada ya ya. It would be wonderful if we could tell those doubters all the things the author was saying in first half of the book. I also found it contradictory when she talked about how bad the symptoms were but she “chose” to hide the agony and heartbreak and push through her illness so nobody would know. ??!? Fibro/CFS often gets to the point that one can NOT push through. So...I was getting tired of the endless repetition and words of angst when the book turned around. I could relate better to the common sense acceptance of the reality that is fibromyalgia. I’m glad that message began to prevail. I already know how to feel hopeless about fibromyalgia, but since it likely won’t go away I much prefer to read about how I might best co-exist with it.
I remember when asthma was considered a psychosomatic illness. I also remember when Epilepsy was considered a mental illness and people who suffered from it did so in silence and shame. Oh and the diseases caused by “a domineering mother”...there were a lot of those! Picture a mom advocating for her child when Dr. is giving her drivel about her child’s seizures being intense tantrums. I’d be getting domineering for my child, too!
But I digress. I wish to make a point that fibro is a fairly “ new” diagnosis and staying silent and hiding is a huge mistake.
This book has some great info. I found it a bit, hmmm...? martyr voiced, especially at the beginning. I felt like there is more that could have been shared about having the choice to live fulfilled and joyful lives, even with the health cards we were dealt, even if the world at large doesn’t get it. WE who have this chronic illness get it... we get it on a level most people don’t ever have to consider, so let’s start there. Life is precious.
The author brings up some lovely points and examples, great reflections and insights about how her life is difficult but meaningful in a unique way. Perhaps her next books will expand on this.
I love the author’s message that “together we can”. Fibromyalgia is an epidemic that can’t be ignored, and until or while new treatments and understanding of the syndrome are being found, our strength lies in the compassion we have for each other—in knowing we are not alone, and learning how to be heard.
I look forward to hearing more about this from this author and the groups she is a part of.
While initially reading this book I kept thinking the author was preaching to the choir. I have fibromyalgia..CFS..whatever. I haven’t picked up a book about it for many years. They really depress me, and some of those support groups plunge me into the depths of despair. It’s a very misunderstood diagnosis and there are still m.d.’s who think it’s a drug seekers illness, emotional in nature, yada ya ya. It would be wonderful if we could tell those doubters all the things the author was saying in first half of the book. I also found it contradictory when she talked about how bad the symptoms were but she “chose” to hide the agony and heartbreak and push through her illness so nobody would know. ??!? Fibro/CFS often gets to the point that one can NOT push through. So...I was getting tired of the endless repetition and words of angst when the book turned around. I could relate better to the common sense acceptance of the reality that is fibromyalgia. I’m glad that message began to prevail. I already know how to feel hopeless about fibromyalgia, but since it likely won’t go away I much prefer to read about how I might best co-exist with it.
I remember when asthma was considered a psychosomatic illness. I also remember when Epilepsy was considered a mental illness and people who suffered from it did so in silence and shame. Oh and the diseases caused by “a domineering mother”...there were a lot of those! Picture a mom advocating for her child when Dr. is giving her drivel about her child’s seizures being intense tantrums. I’d be getting domineering for my child, too!
But I digress. I wish to make a point that fibro is a fairly “ new” diagnosis and staying silent and hiding is a huge mistake.
This book has some great info. I found it a bit, hmmm...? martyr voiced, especially at the beginning. I felt like there is more that could have been shared about having the choice to live fulfilled and joyful lives, even with the health cards we were dealt, even if the world at large doesn’t get it. WE who have this chronic illness get it... we get it on a level most people don’t ever have to consider, so let’s start there. Life is precious.
The author brings up some lovely points and examples, great reflections and insights about how her life is difficult but meaningful in a unique way. Perhaps her next books will expand on this.
I love the author’s message that “together we can”. Fibromyalgia is an epidemic that can’t be ignored, and until or while new treatments and understanding of the syndrome are being found, our strength lies in the compassion we have for each other—in knowing we are not alone, and learning how to be heard.
I look forward to hearing more about this from this author and the groups she is a part of.
October 15, 2019
I absolutely loved reading this book. Having suffered from chronic pain, fatigue and arthritis for many years I can really relate with Joanna.
You go through so many emotions, tears, anger, loss of who you once were and bringing up young children is very hard.
Although I’m under hospital investigations for fibromyalgia, you really have got to have a good rheumatologist, I have so many symptoms, I think I could write a book just on those alone!! :)
Thank you for writing this brilliant book. I even wrote down some really great advice and learned from it so thank you for putting your struggles to paper.
I’m learning to pace myself so well, I have been on a CBT course and do tai chi to relax. I bought a brilliant weighted blanket and use pillow spray at night for a better nights sleep (touch wood) anything that helps you lead a bit of a better life is great. We aren’t pill seekers, we just want to live a life xxx💜💜💜💜💜💜
You go through so many emotions, tears, anger, loss of who you once were and bringing up young children is very hard.
Although I’m under hospital investigations for fibromyalgia, you really have got to have a good rheumatologist, I have so many symptoms, I think I could write a book just on those alone!! :)
Thank you for writing this brilliant book. I even wrote down some really great advice and learned from it so thank you for putting your struggles to paper.
I’m learning to pace myself so well, I have been on a CBT course and do tai chi to relax. I bought a brilliant weighted blanket and use pillow spray at night for a better nights sleep (touch wood) anything that helps you lead a bit of a better life is great. We aren’t pill seekers, we just want to live a life xxx💜💜💜💜💜💜
March 3, 2022
I have lived with fibromyalgia for longer than I want to think about and still to this day I wouldn’t wish it on my worst enemy. My symptoms started when i was in my very early 20’s and I am now 43 and have had my diagnosis since I was 24. Does it get easier, I could lie and say yes it does but in my case no, no it doesn’t.
This book is written well and gets over this down right awful condition accurately.
My life with fibro has been very up and down and at the moment it is the worst it has been. If someone who disbelieved how hard this is could walk a week in my shoes, I would gladly let them kiss my arse and apologise for them not listening or understanding.
This book is written well and gets over this down right awful condition accurately.
My life with fibro has been very up and down and at the moment it is the worst it has been. If someone who disbelieved how hard this is could walk a week in my shoes, I would gladly let them kiss my arse and apologise for them not listening or understanding.
September 2, 2019
Exactly what needs to be said! Thank you for writing this book!
The information in this book is so valuable: both in it's comfort and support for people suffering with the chronic pain of fibromyalgia AND in it's blunt but honest depictions of the trials caused when we try to explain to doctors and friends exactly what we are going through. The affirmations are welcome, wonderful, and so supportive.
I hope many people will read it: doctors, sufferers, family, and friends.
The information in this book is so valuable: both in it's comfort and support for people suffering with the chronic pain of fibromyalgia AND in it's blunt but honest depictions of the trials caused when we try to explain to doctors and friends exactly what we are going through. The affirmations are welcome, wonderful, and so supportive.
I hope many people will read it: doctors, sufferers, family, and friends.
April 5, 2021
Beautiful writing.
Brilliantly written book about being a young parent with fibro. I cried reading this as it felt like the author has gone into my head and put all my thoughts out there. Chapters are small enough to focus on with fog and interspersed with comments from other sufferers really made me realise I'm not alone in this fight.
Brilliantly written book about being a young parent with fibro. I cried reading this as it felt like the author has gone into my head and put all my thoughts out there. Chapters are small enough to focus on with fog and interspersed with comments from other sufferers really made me realise I'm not alone in this fight.
December 19, 2018
Wonderful book
I enjoy reading this book because i have fibromyalgia and i felt alone. I have been dealing it for 14 years. It is not easy life. After reading , I felt encouraged.
I enjoy reading this book because i have fibromyalgia and i felt alone. I have been dealing it for 14 years. It is not easy life. After reading , I felt encouraged.
November 30, 2024
This is just what I needed
I am soaking in the tub in great pain while listening to my husband and child play. This book was exactly what i needed to help get me through another round of guilt.
I am soaking in the tub in great pain while listening to my husband and child play. This book was exactly what i needed to help get me through another round of guilt.
January 3, 2019
Wish I read it sooner!
As someone with fibro, I would highly recommend it to others. Beautifully touching and everything I could relate with. Awesome.
As someone with fibro, I would highly recommend it to others. Beautifully touching and everything I could relate with. Awesome.
April 18, 2019
all of THIS!
September 14, 2019
Every page felt real
I loved it and wish there were more stories from butterflies. I wanted more! Great book. More stories please. Thanks! Roxy N. Placerville CA
I loved it and wish there were more stories from butterflies. I wanted more! Great book. More stories please. Thanks! Roxy N. Placerville CA
July 19, 2023
This book was amazing. I felt like someone was telling my story.
Displaying 1 - 17 of 17 reviews