Book Review on All Our Waves Are Water: Stumbling Toward Enlightenment and the Perfect Ride

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My high school graduation gift – the original Walden Wahine Blue Funboard. Photo by Undiagnosed Warrior (2002).

As any avid reader will tell you, it’s really quite rare for a book to find you rather than the other way around. But that is exactly what happened with Jaimal Yogis’ third book entitled All Our Waves Are Water: Stumbling Toward Enlightenment and the Perfect Ride. More times than not, the reader selects their next material based on their individual interests or as a way to fulfill an empty segment of the self in some manner. For some people, books bring with them all the adventure that may be missing from one’s life; other stories may appeal to more intrinsic motivations of the reader, perhaps offering the integral preservation of the self as if the words and the wisdom divulged in the ink shares the hidden secret of the world, the true meaning of life, or what you need to do to be happy. My go-to reading material, on the other hand, would put most people to sleep: college textbooks, medical journals, research studies, psychological theories, and self-help books about coping with chronic illness. Although my personal interests were much more diverse before I became really ill, both science and research were pretty much the only running theme for which I came to understand the social environment. I am far too analytical to find truth any other way. I should also preface that I’ve never made a commitment to one religion or belief system over another yet have always considered myself highly spiritual according to my own definition of the word. This was the only way that I could reasonably explain my natural attraction to the ocean or the way that large open bodies of water always made me feel at home, particularly in providing much-needed peace within the surrounding chaos of the outside world. All I’ve wished for lately, though, is some semblance of calm within this storm so that I could securely ground myself once again.

“Psychologists say blending into our surroundings is a feature of having thin boundaries versus thick ones. In decades of studies, thick-boundaried people see themselves as part of firm groups (“we do this; they do that”). They see the world as separated into good and evil. They don’t recall dreams well or feel unified with the diversity of the world. Thin-boundaried people remember many, often wild dreams. The border between self and other fall away from time to time. It’s easier for them to feel empathy, but the thin-boundaried sometimes struggle to say focused” (Yogis, 2017, p. XVII-XVIII).

This book review is long overdue as a result of the endless disarray that has taken over my life as of late. In addition to my health declining and my symptoms worsening, my ability to read and write is becoming progressively compromised as I can’t seem to concentrate long enough to put words together that make sense without significant effort and medication anymore. It’s also been challenging to manage my symptoms after recently losing multiple doctors and, therefore, having to find new providers willing to take over where the other doctors left off. Not to mention the fact that I’ve been trying to get through the final semesters of college by taking courses that unnecessarily require at least three or more different writing assignments per week. Thankfully, I only have 2 more classes left until graduation. It’s just been extremely hard to manage anything more beyond medical appointments and academics, so I apologize for the long pause in between updates. Perhaps this is one of the many reasons reading All Our Waves Are Water happened at just the right moment because, if we’re being honest here, it’s been getting harder and harder to stay positive about the future when you’re constantly dealing with one setback after the next. I mean, how are you supposed to maintain hopeful about the future when all you have to compare to is the mundane life you’ve felt stuck in for years? It doesn’t help any that I’ve been overly consumed with thoughts of permanent and total disability with the latest developments in my quest for a diagnosis – the final answers still remaining. Regardless, questions arising about the future continue to be difficult to answer with any definitely, but isn’t that case for all of life’s greatest questions regarding one’s spiritual path and purpose? At least that’s what the author of this book set out to answer in sharing his anecdotes about adversity, whether in love, in travel, in surfing, and eventually in reaching spiritual enlightenment – but perhaps not in the way that you’d expect from a spiritual novel on surfing.

“…the tube was the perfect metaphor…The definition of a wave is a “disturbance moving through a medium,” and the memory of wind is spiraling through the medium of ocean. Atoms, molecules, cells, are bouncing air’s message in an endless domino effect – a game of telephone. Each swell is a sort of ghost, an illusion that only looks like a firm set of matter in motion. And people are too. We look firm with our cookie-cutter parameters: head, shoulders, knees and toes. But the bits of matter that compose our bodies are constantly getting traded out by new water, new food, new air, new chemicals. There is no static amount of stuff that stays with us from birth to death…” (Yogis, 2017, p. 76-77).

The first thing you’ll notice when initially thumbing through the pages of All Our Waves Are Water is the fact that some chapters of the book are cut perfectly straight and narrow, while the edges found in other chapters are clearly jagged and mismatched by comparison.

This distinction in the boundaries physically represents one of many stunning metaphors found within the broader context of the book, whereas the true meaning and eloquence of these metaphors are better illustrated in the author’s tales of surf trips in exotic locations, recollection of events while in the pursuit of a graduate degree in journalism, struggling with the acceptance of adulthood at the start of a professional career, and stories of lost relationships that led to newly found friendships that ultimately composites Yogis’ mystical journey towards spiritual enlightenment. However, a lot of what is written in All Our Waves Are Water is not what you would normally expect from a traditional surfing book, though the ocean and surfing act as the underlying metaphor equating to spiritual and emotional transcendence into adulthood. Surfing and spirituality also participate in the author’s memoirs as both the antecedents and moderating variables that distinguishes life’s successes from perceived failures, acceptance from frustration, or happiness from sadness if you will. Nevertheless, Yogis does a great job at blending spirituality and surfing into the storyline as his inner voice speaks to readers using the same dialogue that we all use to converse with our friends about our experiences, while combining the positive and negative self-talk into the dialogue as either a question or guide for achieving one’s greatest path in the journey.

“This time around, for whatever reason, I had to keep close to the sharp earth and human chaos. This wasn’t the happy path or the sad path, the perfect path or the imperfect path, the caged path or the free path. It was just my path. I had to look into my heart and trust it because nobody knew it, and nobody could walk it, but me” (Yogis, 2017, p. 186).

Aside from the apparent wisdom that comes along with any spiritual growth and development, the author’s internal conflict over settling into adulthood or fleeing from the modern world also brings with it an experience that nearly all readers can relate to in learning how to adjust one’s expectations for the future to fit within the reality of personal circumstances. This, more than anything, resonated with me on a deeper level than any of the lessons found amid the author’s chronicle of events because I honestly have no idea what I am going to do with my life after I graduate from school, especially as I watch every opportunity for recovery slipping away as one treatment fails me after the next. I know we all question the future to a degree, but it’s even more so when you have a chronic illness because it’s next to impossible to plan a future when you can barely commit to plans you made for later that same day. I’d take physical pain over the unknown time and time again; life’s a lot less stressful that way.

“We all know that we could go any day: a car accident, a brain aneurysm, a heart attack, a bullet. Rich and poor, black and white, gay and straight, nothing protects us. We know this, and yet we don’t know it. We move through life as if we have forever, as if we can take a stroll around the block, the cappuccino made unusually well, the Tuesday fusilli, for granted. We live as if there will always be a million more like this. So we filter out the details. We go on stressing about accumulating achievements the big impressive things. But the big impressive things we hold up as the meaning of it all – success, the house on the hill, the shiny car, the World Series title – the things we decide are worth filtering out the little things for – are they so great?” (Yogis, 2017, p. 228).

One of the main things I loved about All Our Waves Are Water is that it provides a myriad of metaphors to help readers examine the overall quality of their lives. It was also a pleasant, but unexpected, surprise to find that a lot of the symbolism in the book seamlessly applies to the expressive nature of both physical and mental illness.

“You couldn’t run away from sadness any more than a river can run uphill… Life was sad. Really sad. Loss. Sickness. Cruelty. Death. There was no way around it. But sadness, when it was always allowed to be itself, was strangely not sad. Sadness was just sadness. Tears just salt water” (Yogis, 2017, p. 41).

Yogis’ accounts also offer readers critical lessons in coping with the pain and disappointment that’s inherent to the inherent obstacles to health and well-being when you’ve been diagnosed with a physical or mental disease as well.

“…the ‘run-of-the-mill person,’ when shot with an arrow, ‘sorrows, grieves, and laments, beats his breast, becomes distraught. So he feels two pains, physical and mental… the pains of two arrows.’ The person trained in mindfulness, however, when shot with an arrow, feels only the physical pain and ‘does not sorrow, grieve, or lament, does not beat his breast or become distraught. So he feels one pain: physical, but not mental” (Yogis, 2017, p. 190).

Could something so minimal and nearly effortless such as mindfulness be the hidden secret to having a happy life? Maybe, maybe not. But isn’t it worth trying to find out? Plus, it’s hard to argue against all the scientific research that suggests that practicing positive psychology can teach chronic illness patients how to effectively cope with pain and symptoms, thereby improving therapeutic outcomes and minimizing the need for pharmaceutical interventions in treating physiological and psychological disorders (Ghosh & Deb, 2017).

“In other words, you witness what’s in front of you – breath, sensation, thoughts, feelings – without trying to change what’s in front of you… scientists now know that doing this simple act every day increases immune function, decreases pain and inflammation, increases positive emotions, decreases depression, and on and on. Doctors are now prescribing mindfulness for everything from back pain to postpartum depression. But for early Buddhists the point was not only getting better grades, fewer colds, and feeling a little happier. It was to actually end suffering – like, for good. Thoughts create reality, when the thinking, and suffering is an experience in the mind. Master your thoughts – or simply let them be without constant reactions and identification – and you master reality. You master being” (Yogis, 2017, p. 37).

Whether you have a chronic condition or not, there’s still quite a lot to learn from this book since it’s full of the raw emotions that consistently thwart and frustrate personal growth. Part of the trouble with trying to gauge personal happiness and success accurately is that the only thing we have to compare these variables to is the modern standards that American’s use to measure and define levels of success, such as beauty, productivity, and income – none of which come even close to resembling any aspect of spirituality and enlightenment. Still, perhaps the most important lesson found in the entire book is learning how to adapt to the ebb and flow of the waves of life by approaching conflict in a similar manner as waiting for the perfect set of waves to come. While wading in the water, you can either become restless and angry or you can accept the fact that the ocean is out of your control. In other words, there will always be difficulties in life – it’s simply unavoidable – but it’s how you choose to handle or perceive each individual setback that will ultimately regulate the amount of pain or suffering you experience as a response. Personally, I’d rather bask in the sunshine than not feel the water at all.

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Waiting for that perfect wave while surfing Sebastian Inlet. Photo by Undiagnosed Warrior (2002).

“There are cycles. Some patterns repeat. Some are shocking flash floods. But here is the thing about storms. I don’t wish them on you, but they are coming and would you want it differently? What would we talk about? How would we become strong? How would we get off our lazy asses and look into what is actually going on here? What would we celebrate? Storms, after all, have that rare power to bring us – yes, we humans who love to devour each other and put it on TV to watch again – together” (Yogis, 2017, p. 230).

The hardest decision in life essentially lays in the choice to either run from the storm or ride it out. The only person with enough power to settle on the best course of action, in this case, is you – no one else can choose a path for you. It helps when friends and other loved ones support your journey by offering enough encouragement and motivation to push you forward in attaining your hopes and dreams for the future, even if there may be many obstacles left to overcome. In all reality, that’s truly what life’s journey and spiritual enlightenment are ultimately all about – it’s the endless pursuit of goals and self-actualization in hopes of achieving one’s highest potential so as to gain access to the ever-elusive experience of spiritual awakening (Maslow, 1943). The rest of the time is merely paddling through the choppy water until you reach the eye of the storm so that you can breathe for a moment before starting the process over once again.


All Our Waves Are Water

Image by Jaimal Yogis [http://www.jaimalyogis.com/]

If you’d like to purchase your own copy of All Our Waves Are Water: Stumbling Toward Enlightenment and the Perfect Ride, please visit one of the following online retailers:

https://www.amazon.com/All-Our-Waves-Water-Enlightenment/dp/0062405179

https://www.harpercollins.com/9780062405173/all-our-waves-are-water/

https://www.barnesandnoble.com/w/all-our-waves-are-water-jaimal-yogis/1125172299


References:

Ghosh, A., & Deb, A. (2017). Positive Psychology Interventions for Chronic Physical Illnesses: A Systematic Review. Retrieved from https://link.springer.com/article/10.1007/s12646-017-0421-y.

Maslow, A. H. (1943). A theory of human motivation. Psychological Review, 50(4), 370-396. doi: 10.1037/h0054346.

Yogis, J. (2017) All Our Waves Are Water: Stumbling Toward Enlightenment and the Perfect Ride. New York, NY: Harper Collins Publishing.

the-device-hospital-surgery

Patient Safety Awareness Week – A Book Review of “Your Patient Safety Survival Guide: How to Protect Yourself and Others From Medical Errors”

Seeing as though today is the final day of Patient Safety Awareness Week, I thought this would be the perfect time to present my review of a highly acclaimed book on patient safety and healthcare. Anyone who knows me will tell you that I am a pretty avid reader. I will read just about anything and everything, just as long as it appeals to my emotions and/or experiences at any given time. Given that my life currently consists of ongoing medical appointments and other healthcare management tasks, most of the supplemental reading I’ve been doing over the last few years (outside of assigned reading for school and keeping up with pertinent medical journals) has primarily consisted of self-help books relating to chronic illness, psychology, and navigating the medical system. So, when I was given the opportunity to review Your Patient Safety Survival Guide: How to Protect Yourself and Others from Medical Errors by Gretchen LeFever Watson, I was extremely elated. Although I had originally planned to take advantage of this opportunity during winter break from school since I knew that I would be recovering from a total hysterectomy and would be looking for things to do while stuck in bed, I am honestly kicking myself for not clearing some time in my schedule prior to surgery because I could have really used this information before my own patient safety was put at risk.

For those of you who are unaware, I was scheduled to have a total hysterectomy on December 8, 2017, using the da Vinci Robotic method in order to rectify the excessive and erratic bleeding that started as a result of complications from late-onset endometrial ablation failure following my NovaSure procedure in 2015. Unfortunately, what was supposed to be a “minimally invasive” procedure with “minimal scarring” and a “quick recovery period” turned into this mess…

Hysterectomy Scar Resulting in Injuries Caused by the da Vinci Surgical System

Photo by Undiagnosed Warrior (2017). Hysterectomy Scar Resulting in Injuries Caused by the da Vinci Surgical System [Image].

… but I will go into more details of this tragic event at a later time. Needless to say, it would have been far more helpful to have read this book before I actually needed the helpful tips supplied in the pages of Your Patient Safety Survival Guide.

The first thing I want to mention before reviewing the content of this novel is that I found myself drawn to this book simply because the author’s personal and professional background intrigued me. From a professional standpoint, Dr. Gretchen LeFever Watson holds a Ph.D. in Clinical Psychology and has held a variety of training and leadership positions in hospitals and community-based healthcare programs. Not only has she received numerous awards and grants for her research, but her work has also generated a great deal of media attention and recognition from other subject matter experts in the fields of psychology and healthcare as well (Watson, 2017). This is in addition to publishing two other patient safety books along with Your Patient Safety Guide and several peer-reviewed research papers. Considering that the author is clearly well-versed and has a long-standing history of working within both the past and current structure of the American medical system, I knew she would offer a great deal of insight from the professional side of health care. The fact that Dr. Watson has also been an advocate for patient safety and wellness from personal experiences as both a caregiver for her mother and as a parent when a medical error almost took her daughter’s life at the young age of only four-years-old made me think that her opinions would likely represent a more balanced perspective overall (Watson, 2017). As someone with multiple chronic and rare conditions, and a student studying for a degree in clinical psychology that has also spent many years working in veterinary medicine prior to disability myself, I was definitely interested in reading her perspective on some of the issues currently plaguing the safety and care of patients. Thankfully, this book did not disappoint.

Aside from the fact that each chapter of Your Patient Safety Survival Guide covered a wide breadth of obstacles in receiving adequate medical care (e.g., safety habits and best practices, avoidance of medication errors and overprescription of dangerous medications, and the prevention of infections and common medical injuries that can occur as a result of human error, negligence, malpractice, and purely bad luck), the thing that I liked most about this book is that every topic discussed in the text provides readers with an eclectic explanation illustrated through research statistics and patient examples. Chapter 1, for instance, notes some shocking statistics that suggest “at least 440,000 patients die needless deaths in US hospitals each year” and the “initial estimate of the financial impact of the patient safety crisis indicated it totaled around $5 billion annually, about one-quarter of which involves out-of-pocket expenses” (Watson, 2017, p. 7-8). While these numbers are obviously alarming, the author prevents hysteria or anxiety over such occurrences by putting the situation into a more realistic perspective by detailing the potentials causes of medical error and offering ways to combat it as either a patient receiving care or professional providing care.  In this way, the author is avoiding labeling the problem according to a single source but rather a complex, systematic problem that can result in an infinite number of breakdowns within the medical system itself. Personally, I find this account refreshing because it first acknowledges the problem, without placing blame on either the patient or medical professionals specifically, and then it explains the how and why medical errors happen. It also makes it easier for the reader to accept the information before the author moves on to discuss her own recommendations and potential solutions for resolving the problem at hand. Nevertheless, one factor that distinguishes this book from many other patients and/or chronic illness texts is that Dr. Watson wrote the content of this book to equally address a combined audience of both patients (or their family members) and medical professionals alike.

Another important element of Your Patient Safety Survival Guide that I found relatively helpful is that each chapter presents the reader with either a tool that can help them measure and target goals relating to different variables of patient safety or an action plan that can minimize the potential for common medical mistakes. Although most of the tools and guidelines presented in this book are based on logic and common sense, I can personally attest to how easy it is to forget even the simplest of things, especially when you’re anxious about an upcoming surgery or procedure, concerned as to whether the physician will take your medical complaints seriously or not, or you’re just simply distracted by pain or other symptoms. In these cases, simpler is almost always going to be better in the long run anyways, although some of the planning tools and safety tips were also new to me as well. Still, the biggest takeaway that I got from reading this book came from the seventh and final chapter entitled Acceptance, Apology, and Forgiveness: Safeguard the Lives of Patients and Healthcare Providers. One of the reasons that this specific chapter stood out to me the most is that the end of this book overly emphasizes the fact the doctors and other healthcare providers are only human and, therefore, they’re liable to make mistakes just like anyone else. As Watson (2017) points out, “we all make errors. Our errors rarely result from the willful disregard for others. Factors beyond the control of providers often influence the emergence of error, and, when errors occur, providers are often in need of compassion – just like event’s primary victims” (p. 140-141).

With my own significant complications resulting from a major medical error fresh on my mind, the stories and information shared within these final pages clearly hit too close for comfort on a number of occasions. In many ways, it would have been easier to blame the surgeon and his support staff who performed my hysterectomy for everything. Lord knows that I had plenty of good reasons to rightly justify my anger and hatred over the situation, but what good would that have done in the end? Being angry about it wouldn’t make me feel better or allow me to heal any faster; yelling at the doctors and the hospital staff also wouldn’t prevent similar mistakes from happening to other patients in the future. Though it’s far more comfortable to blame the doctor when things don’t go as planned, it’s equally as hard to accept that it’s rare for patients to consider the harm we inflict on medical providers by establishing unrealistic expectations regarding our health care wants or needs. This is another reason why I really enjoyed reading this chapter because I liked that Watson (2017) discusses both the physiological and psychological impact that medical errors have on both the patient and their families, as well as the significant damage and stress that these faults can have on healthcare providers and facilities. Once again, it’s easy to forget that doctors and their support staff already feel the train and the pressure simply from completing the tasks they were trained to do in the first place. On the other hand, there will always be those few providers who tend to forget that patients are also human and just as fallible as they are themselves. Watson (2017) describes the apparent divide amongst patients and professionals best by suggesting that the biggest flaw in the wake of a major medical error or mistake occurs when the lines of communications are closed off, such as when full disclosure about the nature of the error is avoided in order to favor one’s pride instead.

In the end, there really isn’t too much more one could ask for in a single book regarding patient safety and healthcare, but if I had to choose one thing to criticize about any part of this book it would have to do with the fact that some of the chapters offer a rather viewpoint on the use and/or abuse of stimulants and opioids for managing chronic symptoms or pain. However, this is just my personal perspective based on taking these (or similar) drugs in order to manage my own symptoms either in the past or present, in addition to considering alternative opinions from other chronic illness patients who have also dealt with the medical system for an expansive period of time as well. Even if I don’t necessarily agree with all of the author’s personal and professional opinions as deliberated throughout Your Patient Safety Survival Guide, I still respect and appreciate the author’s judgments on these topics as she does support her logic using mainstream facts and theories regarding these types of medications. I am also very much appreciative of Dr. Watson’s willingness to devise solutions to the problems in healthcare and patient safety rather than focusing on the inadequacies of the system alone. I really do believe that this book – and Dr. Watson’s research and safety initiatives for patient care – will prove beneficial for anyone engaging in any part of the medical system to some degree. More importantly, I would highly recommend this book to anyone managing a chronic or rare disease since we are among the most vulnerable population of victims exposed to potential medical mishaps as we are routinely asked to put our faith, trust, and livelihood in the hands of practitioners of medicine.

If you’d like to purchase a copy of Your Patient Safety Survival Guide: How to Protect Yourself and Others from Medical Errors, please visit one of the following online retailers:

https://www.amazon.com/Your-Patient-Safety-Survival-Guide/dp/1538102099

https://rowman.com/ISBN/9781538102091/Your-Patient-Safety-Survival-Guide-How-to-Protect-Yourself-and-Others-From-Medical-Errors

https://www.barnesandnoble.com/w/your-patient-safety-survival-guide-gretchen-lefever-watson/1126025512

https://play.google.com/store/books/details/Gretchen_LeFever_Watson_Your_Patient_Safety_Surviv?id=XQglDwAAQBAJ

References:

Brown, A., Demyan, A., & Agha, S. (2014). Research on Victimization Among People with Disabilities. Retrieved from https://www.nij.gov/topics/victims-victimization/Documents/violent-victimization-twg-2015-browne-demyan-agha.pdf.

Cleveland Clinic (2018). Hysterectomy: What You Need to Know. Retrieved from https://my.clevelandclinic.org/health/treatments/4852-hysterectomy-what-you-need-to-know.

Drugwatch (2018). Da Vinci Surgical System. Retrieved from https://www.drugwatch.com/davinci-surgery/

Good Reads (2016). Gretchen LeFever Watson. Retrieved from https://www.goodreads.com/author/show/15244917.Gretchen_Lefever_Watson.

Watson, G. L. (2017). Your Patient Safety Survival Guide: How to Protect Yourself and Others from Medical Errors (1st ed.). Lanham, MD: Rowman & Littlefield Publishers.

Wortman, M. (2017). Late-onset endometrial ablation failure. Case Reports in Women’s Health, 15, 11-28. https://doi.org/10.1016/j.crwh.2017.07.001.

https://www.pexels.com/photo/boy-child-clouds-kid-346796/

Childhood Abdominal Migraines

I recently got an opportunity to talk with a representative from the Diamond Headache Clinic and they have shared this awesome presentation on childhood migraines, including abdominal migraines that were actually one of the first diagnoses I considered when I first began looking for answers to explain some of the many gastrointestinal symptoms I had as a young child myself. I thought this presentation could be a really good resource to share here in case any of these symptoms can help anyone still looking for answers for their own symptoms.

Courtesy of https://www.diamondheadache.com/

Chronic Illness Put My Olympic Dreams On Hold. Here’s What It’s Like To Watch The Games In PyeongChang

Recently, Bustle Magazine asked me to write a follow-up article to 10 Ways Living With a Chronic Illness is Like Training for the Olympics that was published on The Mighty for the 2016 Summer Olympics. The new article, Chronic Illness Put My Olympic Dreams On Hold. Here’s What It’s Like to Watch the Olympic Games in PyeongChang, went live on the Bustle website today. Check it out and let me know what you think.

So, if you ever feel like giving up…

I wrote this post in response to a discussion that was going on in the Undiagnosed Warriors Support Group last night. I wanted to share it here because I thought that maybe it could help some of you. I know I haven’t posted all the findings/diagnoses like I’ve been promising,  but I really am working on it. I’m still struggling to put it all into the right words at the moment, even after all these months. As most people who have messaged me can attest to, I’ve had a lot going on lately. Nevertheless, I do hope that the following can at least give you a sense of where I’m coming from following my diagnosis:

“It’s so easy to fall back on those [negative] feelings because doctors and everyone else question our experiences. I can’t say what it’s like to be on the other side but, for a long time, I accepted an inaccurate psychological diagnosis, even though it never felt right to me. I even went to years and years of psychological counseling and therapy (including CBT, Biofeedback, Exposure Therapy, etc.), in addition to trying out different anti-depressant and anti-anxiety medications, but the meds only made me feel worse.

As I got sicker and sicker, the more the people in my life started to doubt both me and my illness. I honestly thought that I was going crazy; that perhaps I was actually ‘hallucinating’ my symptoms; or maybe making myself sick. After so many years of telling myself that what I was feeling was purely anxiety or some kind of subconscious eating disorder that I was possibly unaware of, I started to believe that the doctors probably got the diagnosis wrong. My psychologists at the time agreed that there was no way that a psychiatric diagnosis could explain all of the physical symptoms I was experiencing, especially now that my symptoms were clearly becoming more and more visible to everyone around me.

Even though I have a diagnosis now, I still find myself questioning myself – if that makes sense. Like, does it REALLY hurt as bad as I think it does? Or am I overreacting like the doctors said?

“It’s not in my head” – This is actually my own CT scan of the head/brain (Photo credit: Undiagnosed Warrior, 2016).

At the same time, I have also lived with approximately 20 different conditions (many of which are known to cause debilitating pain) for more than 25 years and yet, somehow, I managed to work a full-time job up until two years ago – all while going to school and staying active in sports and other clubs/activities/volunteer-work until I just couldn’t do it any longer. For most of my life, I had been taught to push through the pain; that pain was simply weakness leaving the body, and I had to keep fighting until every last ounce of the pain was gone.

Even now, I still push myself too hard sometimes because so many people have either called me lazy or crazy. It made me want to work that much harder just to prove them wrong.

Often, I find myself struggling with knowing when I need help. For instance, I never know when I should seek immediate medical attention because I’m so afraid that I’ll go to the hospital or something and be told that there’s nothing wrong with me or that my symptoms are not serious enough to justify an urgent appointment. Alternatively, I’ve also had multiple doctors tell me that I have the highest pain tolerance out of any of their patients. At least there’s that. If that’s true, though, then why do I feel so very weak and overdramatic when I tell people the truth about how in really feeling? Why am I in so much pain all of the time?

The worst of it happened just last week, when I had to prepare hundreds of pages of medal tests, lab reports, and clinical notes, along with an 11-page letter written letter, just so that I’d have enough “proof” to confirm that I was, in fact, physically stuck – and not with the kind of symptoms that are caused by a psychiatric illness either. Why did I do this, you ask? It was because one of my doctors accidentally wrote the following in my medical chart:

No joke. I was told that the only way I could have this changed or removed from my medical record was if I met the doctor face-to-face to discuss it further. It didn’t matter at all that the other specialists I’ve been seeing a lot longer all agreed that I had true “autonomic dysfunction” (or dysautonomia) based on objective autonomic testing, but they seriously wanted me to come into the office to confront the doctor in person. Ironically, my appointment was scheduled for the second last day of Dysautonomia Awareness Month – how perfect.

Although the somatoform diagnoses ended up being the result of a clerical error, I still felt pretty defensive and broken over the whole ordeal. I thought to myself, after all this – after all that I’ve been through and how hard I had to fight for a diagnosis; all the tests, all the doctors, and all the failed treatment and medications that have literally made me sick or have taken away years from my life – how dare anybody  [anybody meaning the doctor in this case] question my authenticity or call me a liar – how dare he do that to me! Obviously, this hurts me far more than I can express, I also knew I shouldn’t have been that angry over it either. I knew (and my other doctors knew) that this diagnosis wasn’t correct but I was angry nonetheless. I mean, I was really, really angry and spiteful about it. More importantly, I was hurt by the idea that I needed to “prove myself” once again. It’s so exhausting having to explain yourself over and over, while also feeling ignored at the same time.

I wish that I could say that this all gets better with time but I honestly don’t think that I’m in a “good enough” place to really make a fair judgment on this as of yet. All I can say to anyone reading this – or anyone still awaiting a diagnosis – is to learn how to trust your instincts and then follow it with your whole heart, particularly when it comes to your own health and the presentation of symptoms. Whether you’re dealing with physiological symptoms or psychological symptoms (or perhaps even both), please do yourself a favor and trust yourself because it’s these instincts that will ultimately guide you to where you need to go and how you need to get there. You can (and will) make it through this mess – that I can promise. It’ll just take everything you’ve got and you’ll have to fight twice as hard to simply get your doctors to listen.”

Gut instinct is really the key here because it is an adaptive, biological response in the body whose sole purpose is to keep us alive. It goes back to that whole automatic-autonomic response thing that we all have hidden deep inside us somewhere that ultimately drives a person’s will to survive. And, at the end of the day, isn’t that what life is all about? Learning how to survive, despite the danger?