Resilience and Self-Advocacy for Patients with Chronic Illness

This is a presentation I gave at Mount Sinai Hospital in Toronto at an educational event which provides peer support for individuals with Crohn's disease and ulcerative colitis.

I speak about the emotional dimensions of chronic illness, and IBD in particular, which are often overlooked when medical care is considered and can greatly interfere with our inner resilience. After delving into the psychological issues often faced by patients, I provide tools and techniques to increase resilience in the face of these obstacles. I then go on to give some tips that have helped me advocate for myself and other patients within the healthcare system.

How Are You? The Most Meaningless Question in the World, and Why it Matters

Photo by Randy Tarampi on Unsplash

It feels like a silly question to ask these days. There’s societal breakdown happening on all levels; systemic cracks in our healthcare, economic and political systems deepening while on the personal level more of us are struggling physically, mentally, emotionally and spiritually. Everyone can feel it.

And yet, we continue to check in with ourselves and one another, posing the question when we greet each other. How are you? And then both parties sheepishly look at each other, not quite sure how to respond. Do we have the words to accurately describe the feelings that churn through our beings throughout these difficult and chaotic days we are living through?

I have always thought of myself as a person who is in touch with her emotions. I thought I hated this question, because it didn’t seem to mean anything; or more accurately, it’s meaning felt more determined by the person inquiring and the social context than the inquiry itself.

But the truth was, I became nervous and confused when people asked me how I was doing, because I didn’t really know the answer. I realized this when I noticed that I resisted the question even more if a true answer was required. For example, if you are in a therapist’s office or with a close friend, they want to know the truth. The more genuine the question seemed, the more flustered and nervous I became. I was at a loss for words, and typically quickly would try to get the conversation back to them.

This was because in my mind, the most important and relevant question was not how am I doing, but ‘how do you think I am doing?

What that meant was, it didn’t really matter if I was in a hospital bed or in the midst of a depressive episode. I always had a smile plastered to my face, and I was always okay. I didn’t really know how I was feeling, and I was rewarded for complying to societal standards of me. Throughout most of my life, that was the definition of success. The problem was, I couldn’t keep it up and I felt like nobody really knew me, so I was completely isolated and terrified behind that big smile plastered on my face.

The truth was, I really was not okay. But I was so out of touch with my emotional state that I continued to go on with my life as normal - alternating between periods of busy-ness during the day with periods of distraction to numb me from my uncomfortable internal state.

I didn’t understand why life felt unbearable, because people around me told me I was okay, and I wanted to believe them. It seemed to me that society placed in utmost importance our physical appearance and level of productivity and status. I was on my way to success in both areas. How I was doing to others seemed well. That was the only question I really understood how to ask.

Meanwhile, my body was telling me something with increasing urgency: we are not okay! I did not listen. I couldn’t listen, because my body was interfering with my goals and it had to be silenced. I kept smiling and carried on. Deep down I knew I could not carry on like this, but I held on to this illusion that the doctors would fix me up again, like they always had before. That my body was against me in every way: it didn’t look the way I wanted it to, and it didn’t perform the way I wanted it to. It was hurting, and it didn’t stop; I was increasingly turning against my very being and resented myself deeply. Performance was living at that time, and my body would not perform the way my mind commanded. I was at a standstill, slowly drowning in the quicksand of my life. Still smiling.

The reasons that I did not know a) how I was actually feeling and b) how to address my basic needs are not due to a personal failing of mine. I was simply following the directions of what society told me to do, and had never learned differently: that how I truly felt mattered.

Our current systems are set up to prepare us to connect with ourselves and our emotional landscape on the most basic level. In a school setting, how we are doing is determined by our behaviour and grades. In a healthcare setting, how we are doing is determined by tests that doctors perform. How we feel, in the meantime, is seem as much less relevant. This is a true tragedy. In an age of social media where image is everything, this situation seems to be increasingly worsening. And so are mental health and chronic illness rates.

After many years and long journey, I have learned that there is no expert or external marker that can determine for me how I am doing and how to meet my needs. I practice cultivating a compassionate sense of how I am truly doing through meditation, yoga practice and other somatic tools of self-inquiry. Slowly, this question is becoming more important to me than how you believe I am doing. This felt immensely selfish at first, but I have come to understand that it is when each of us is primarily responsible for meeting our own needs that we can effectively care for others and contribute to society in a meaningful way.

It seems to me that more people than ever are facing the dilemma that they do not know how they are doing when the role is removed and the mask comes off. Facing this reality head-on is immensely difficult, but ultimately incredibly fulfilling and healing.

It begins simply, by sitting still, turning off the distractions, and asking yourself: “how am I doing?” and then allowing whatever comes up, no matter how uncomfortable. Place your hands over your heart through this process and remember that you are capable of sitting with any emotion. That you deserve to be heard by the most important person in your life - you. If you are looking for personal guidance on this journey, please reach out! We can discover together how you are doing. No, really.

Cultivating Self Love Through Mindfulness

The relationship that you have with yourself is the longest and most important relationship you will have in your life.

What is the quality of your relationship with yourself?

Today's practice includes easeful and restorative yoga postures done on your back and a relaxing breathwork exercise. Through connecting to our body + breath, we explore how to cultivate a more compassionate and loving relationship with one's self. Most of us are feeling a bit unsettled & restless during this time of self-isolation.

My aim is that these simple movement & mindfulness techniques will bring you to a deeper sense of clarity & ease.

Beginner-friendly ~ great for anyone who has been interested in practising more mindful ways of living and trying out yoga, meditation or mindfulness practices. This session is all seated/laying down to ease us in.

Grab a cup of tea, get comfy, turn off your phone and join me!

Mindful Meditation & Yin Yoga for Acceptance

What are you resisting in your life?

Meeting ourselves and others with a sense of acceptance allows us to move forward with increased clarity and wisdom.

Today's practice explores the theme of acceptance through a seated meditation and easeful yoga postures done on your back with the aid of a strap that target the hamstrings and hips.

Most of us are feeling a bit unsettled & restless during this time of self-isolation. My aim is to provide you with simple movement & mindfulness techniques that will bring you to a deeper sense of clarity & ease.

Beginner-friendly ~ great for anyone who has been interested in practising more mindful ways of living and trying out yoga, meditation or mindfulness practices. This session is all seated/laying down to ease us in.

Grab a cup of tea, get comfy, turn off your phone and join me!

Learning to Live: A Tribute to Ahimsa Yoga Centre

Lokah Samastah Sukhino Bhavantu ~ May All Beings Together Find Happiness.

 🜁 ~ 🜂 ~ 🜃  ~🜄

Five years ago, I walked up the stairs and through the doors of Ahimsa Yoga Centre for the first time. I could never have imagined how that fateful encounter would change my life forever. I had a feeling Ahimsa was special right away, based on the open, welcoming and laid-back feeling the yoga studio evoked. There was a friendly and engaging conversation occurring by the front desk as my cousins and I asked if we could register for a class. We were greeted with an overflowing amount of warmth and kindness by the staff, teachers and fellow students. It felt like everyone was genuinely happy that we were there. I have never wanted to leave ever since.

I had just moved into a bachelor apartment a few blocks away from the yoga studio and was entering the second half of my 20’s at this time. Having just completed my studies, I was finding the transition from academics to “real life” difficult, to say the least. I had everything I needed to enter adulthood, or so it seemed. I was on the cusp of ‘‘success’’ from an outsider’s view: a loving family, boyfriend and Master’s degree under my belt, I seemed ready to take on the world. But the truth was very different: chronic physical and mental health issues were plaguing me daily. Unprocessed medical trauma that had been buried since my childhood was leaking out as a poison into all areas of my life. It left me terrified of my body. Mistrusting of my body. Hating my body. Needing a constant escape from my body.

I had been able to survive up to that point by ignoring my body and existing within the confines of my mind. In many ways, living merely in your head is rewarded in our society. I could sit for hours and write an essay or study for a test, followed by numbing out through watching mindless reality television. I could ignore the physical pain I was often experiencing and the constant state of terror I felt coursing through me. I could fuel my chronic anxiety into “productivity”. I was a “good girl”, and I was burned out. I was dying on the inside while smiling on the outside.

It is through our felt experience that we become in touch with the present moment. It is only in the present moment that we experience the pleasures of life: sexuality, creativity, laughter, joy, connection, love. I knew I wanted to experience these things, but had forgotten how to long ago. We do not learn how to live in a classroom or doctor’s office.

I needed teachers, and I found them at Ahimsa. I returned daily for years and practised feeling safe and connected to my body in the warm company of others doing the same. There was a level of care and compassion consistently felt at that studio. You could visibly see it in the way we all lingered before and after class. We all wanted to be there - to continue the conversation, to be together, to soak up the energy we had cultivated for as long as we could before venturing back into the rest of our lives.

At Ahimsa, I learned how much more we are than the roles we play. I sat on my mat beside esteemed academics, restauranteurs, business-people, actors… but we were all the same. Stripped of our titles and technology for a few sacred moments each day, we sweated and breathed and moved towards our personal intentions supported and held by the members of this inclusive modern tribe.

Human beings are simple in many ways: we want to be seen, to be understood, and to belong. As soon as I entered Ahimsa Yoga Centre, I felt an indescribable sense of belonging I had never felt before. Over the last five years, I was fortunate enough to assume many positions at the studio. I worked in the Energy Exchange program, I graduated from the Yogayama Yoga Teacher Training Program, I began teaching yoga at the studio and coordinated the Yogayama program for a time.

My time at the studio and in these various roles allowed me to learn skills and make connections that will last a lifetime, from friendships to creative collaborations that have given me the confidence to redefine what success looks like and live authentically according to my own values.

It was also within this space that a true miracle occurred: I slowly began to inhabit my body. I learned how to live at Ahimsa. I laughed, I cried, I conversed with others for hours about philosophy and the strange & beautiful human condition. I flirted, I danced, I embraced. I made friends that will last a lifetime. I felt pleasure and pain. I was seen and heard and loved for exactly who I was. I saw and heard and loved others in return. A messy metamorphosis was taking place: I crawled, toddled, walked, and finally, danced my way into adulthood. We were alive together.

 🜁 ~ 🜂 ~ 🜃  ~🜄

To my teachers : Thank you. I hope to continue to learn from you for the years to come. Thank you for providing a safe space for me to learn to love myself. Thank you for providing endless hours of inspiration through the love with which you imbue your teachings. I aspire to offer my students a fraction of what you have gifted me.

To JP and Michelle Tamblyn-Sabo: Thank you. Thank you for creating and sustaining this sacred space with your blood, sweat, tears and magic. Thank you for the integrity that guided your leadership as you provided us with the support we needed to heal ourselves. Thank you for being my mentor, guide, teacher, shaman, guru and boss. Thank you for believing in me when I did not believe in myself. Thank you, most of all, for being my friend.

To the Ahimsa tribe: I see you, I hear you, I belong with you. May we continue to experience precious moments of life together, in whatever form they come, for the years to come.

Love always,

Montana

The Loneliness Generation: A Spiritual Crisis

I have two potentially uncomfortable questions for you:

1. Are you lonely?

2. Did this feeling of loneliness begin with the COVID-19 epidemic?

If you answered 1) yes and 2) no, you are not alone. Researchers have long known that loneliness is growing in society, particular among the millennial generation, which I am certainly a member of. In fact, those of us between 24-35 years of age have been deemed “the loneliness generation” according to statistics from the U.S. and around the world. Loneliness isn’t the only unfortunate trend that was already increasing among all segments of society prior to the epidemic. As we came ‘roaring’ into the 2020’s, rates of mental illness, chronic illness, addictions, burnout, deaths of despair and suicide have been growing.

You may think that grouping loneliness with these more dire conditions seems unreasonable, but loneliness is incredibly detrimental for us both mentally and physically - never mind the fact that it is incredibly painful.

Despite this stark reality, I wonder how many of us are ‘diagnosed’ with loneliness as a cause or symptom of our distress when we go for doctor’s check-ups. The truth is that loneliness can manifest as depression, or even inflammation, but does not often get addressed within our current Western model of healthcare. This is changing: doctors in Britain have begun prescribing social interactions for their patients, and my hope is that this wonderful trend spreads as we continue to talk openly and address these massive issues facing us in our current global society.

But it still doesn’t get to the root issue: why are we so damn lonely?

Well, experts of different fields have their own explanations for why us millennials are the “loneliness and burnout generation”, and these causes are attributed to various systemic issues facing society, from economics to technology. They analyze statistics and come up with various findings, which all contain elements of truth and reveal part of the picture. However, largely these academic findings are based in an old paradigm where the mind and body are separated, and spirit has been surgically removed from the conversation.

Loneliness is a manifestation of our spiritual crisis.

What seems to be at the heart of the loneliness and mental health epidemic in my opinion is a crisis of the spirit, which has manifested in a number of societal and personal ills. What I mean by spirituality is the quest for meaning beyond our material desires. The spiritual crisis stems from the fact that for the last few hundred years, for various reasons, we have lost communities of like-minded individuals supporting one another and working together to grapple with both survival and the big and unanswerable questions of life:

Who am I?

What do I value?

What is this whole life thing?

What does it all mean, and how do I live a life of meaning?

In the vacuum of dedicated spiritual communities, our economic systems filled the void to become the basis for our ethics, values and purpose in life. When the pursuit of happiness through economic means is the only basis for what it means to live a good life, we pursue a life full of promise which always feels somewhat empty. In a world where God is dead, our insatiable desire to consume has crept in to become the central goal of our lives. So, here we are. A generation that is well aware that money does not buy happiness, but still living within an old paradigm, which preaches the gospel of consumerism:

Buy more, do more, be better, be more attractive, be younger, be fitter, be healthier, buy a car, buy a nicer car, be more productive, buy more, go on more vacations, look better, be happier, buy more, go out more, do more, look better, smile more for more pictures, get more plastic surgery, do more crunches, post more, be smarter, be happier, buy a house, buy a bigger house, get more followers, consume more, scroll more, buy more.

This is the invisible ethos of our culture, and we have spent our childhood, teenage years and young adulthood absorbing the message loud and clear. What does this have to do with loneliness? Well, the result of living by the values of serving our economic system is that if I need more, then I can justify taking from you. Despite what previous generations believed, we know that the world does not have infinite resources, In fact, we are pretty close to reaching the limit of the planet. In a world where resources are quickly dwindling, we have been taught that we must look out only for ourselves in order to survive. This scarcity and survival mentality exists throughout every modern society. If anything, it actually becomes more acute in communities that are higher in socio-economic status. The more you have, the more you feel you need - at the expense of your neighbours. 

We all want to do incredible things and have our parents and community feel proud of our achievements. Many of our grandparents and parents worked incredibly hard to provide us with opportunities, and there may be a sense of guilt and obligation to prove our sense of worth to ourselves and others. But in pursuit of these material or status-driven goals (often in the absence of others goals) we begin to see others as either superior or inferior to us, based on whatever factors we use to determine success. We are constantly judging others, and assume they are judging us too. In this hyper competitive and superficial atmosphere, we are completely alone. 

So we work hard to prove our worth. But many of us don’t feel worthy at all, and these feelings of unworthiness manifest in deep loneliness and isolation. We want to belong and feel connected, so we chase after the things that we believe will give us a sense of connection and meaning: get the job, get the house, get the pension - everything we have been taught to desire. We post about our beautiful lives on social media in order to prove to others that we are “making it”. We are trying to prove to others that we belong, but deep down, we aren’t so sure, and always feel that we are falling short. This is a lonely place to find yourself.

Herein lies the paradox: we could be around people all day, whether colleagues, family or friends, and yet still feel completely alone. It’s as though we are simply wearing one mask after another, not knowing who we truly are behind the performance of these various roles we play. Where is a place we can go to speak truthfully, discuss the big questions of life and understand ourselves and our values? Where can we truly be honest with ourselves and others without judgement? Without these spaces, we tend to experience this pervasive sense of loneliness that continues to naw at our souls.  

Despite the grim picture I have just painted, I am very optimistic for the future of my generation and generations to come. It is when we face a crisis (hello 2020!) that we are forced to face the facts that the old paradigm is simply not working anymore. The new paradigm arising is one which includes the spiritual dimension and values each member of the human collective as inherently worthy, simply as they are.

Like most ills of the 21st century, loneliness cannot be alleviated through a prescription. We treat loneliness through authentic connection, and we can only truly connect with others when we have established a loving relationship with ourselves.

This is the true aim of all the work that I do as a holistic healer. Let’s create this space together.

Photo by Anthony Tran on Unsplash

Mindfulness for Kids

Children are masters of mindfulness, which ultimately is the ability to be present.

They simply need the opportunity to practice this skill in engaging ways, which is what this class will provide!

Together, we practice various meditation techniques specifically adapted for children, such as: assessing our internal weather report, mindful breathing and mindful movement.

Mindfulness is greatly beneficial for children and adults alike, and research shows it helps to decrease stress and anxiety, increase attention, improve interpersonal relationships and strengthen compassion. Of course, fun and laughter is always included.

Yoga Adventure for Kids ~ Under the Sea

This yoga class designed for kids aged 3+ aims to keep children flowing and breathing as they invoke their creative spirit.

We will go through postures that provide an opportunity for kids to use their imagination to embark on a deep sea adventure. They will also enjoy the benefits of stretching and moving with breath, such as: improved balance, flexibility, focus, connection, health and well-being.

Body Resilience: Gentle Practices for Uncertain Times

Breathing and Mindful Movement to Find Balance

What makes you feel balanced in your life?

Today's practice explores this question through a breathing exercise, some seated yoga postures and ending with a restorative meditation.

Most of us are feeling a bit unsettled & restless during this time of self-isolation. My aim is to provide you with simple movement & mindfulness techniques that will bring you to a deeper sense of clarity & ease.

Beginner-friendly ~ great for anyone who has been interested in practising more mindful ways of living and trying out yoga, meditation or mindfulness practices. This session is all seated to ease us in.

Grab a cup of tea, get comfy, turn off your phone and join me!

Mindful Breathing & Yoga to Cope with Chaos

Most of us are feeling a bit unsettled & restless during this time of self-isolation. My aim is to provide you with simple movement & mindfulness techniques that will bring you to a deeper sense of clarity & ease.

Beginner-friendly ~ great for anyone who has been interested in practising more mindful ways of living and trying out yoga, meditation or mindfulness practices.

This session is all seated to ease us in. Grab a cup of tea, get comfy, turn off your phone and join me!

What Every Patient Needs to Know ~ The Emotional Impact of Chronic Illness

A panel discussion with myself and fellow chronic illness advocates Rasheed Clarke and Jenna Rines.

In this clip I answer the following questions:

- Were mental health challenges something that you dealt with before you were diagnosed with inflammatory bowel disease, or did they come with the onset of your symptoms?

- When did you notice that your mental health was taking a hit?

In this clip, Rasheed, Jenna and I discuss what can be done when someone with a mental health issue is not being taken seriously by the healthcare system and the importance of patient self-advocacy.

In this clip, Rasheed, Jenna and I discuss the mind body connection and how it relates to living with inflammatory bowel disease. We speak about the difficulty of separating the emotional and physical impacts of chronic illness, barriers in communication with medical professionals and how to practice self care in the midst of the 'vicious cycle' of illness.

In this clip, Rasheed, Jenna and I discuss the immense difficulties chronic and mental health patients face when trying to speak out about their experiences. We talk about how stigma, shame, guilt and isolation keeps patients silent. We then discuss how caregivers and medical professionals can best support us, and the importance of active listening.

In this clip, Rasheed, Jenna and I discuss the best ways for caregivers and medical professionals to lend support to those suffering from chronic and mental health challenges, the benefits of active listening skills and the value of patient advocates. We also speak about the overlooked vital role of the caregiver, and why it is so important for caregivers to seek support.

Jelly Belly

When I was seven years old, I was diagnosed with acute lymphoblastic leukaemia. I was on chemotherapy for three years, from the ages of seven to ten years old. I should note here that I am incredibly fortunate. I was treated at one of the best children’s hospitals in the entire world. This diagnosis would have been a death sentence not too long ago.

Prednisone 

One of the drugs that was part of my chemotherapy treatment is called prednisone. Prednisone  is a synthetic corticosteroid. Corticosteroids have many effects on the body, but they are most often used for their potential anti-inflammatory effects, particularly in those diseases and conditions in which the immune system plays an important role.

Here is a list of a few of the many side effects and adverse effects of this (life-saving) drug:

• Depression

• Insomnia

• Mood swings

• Weight gain / ‘moon face’

• High blood pressure

• Muscle weakness

• Nausea / vomiting

• Impaired wound healing

• Ulcers

• Diabetes

• Osteoporosis

• Increased frequency and severity of infections

• Retardation of growth in children 

I was a young girl who was regularly taking a medication that made me unable to sleep, experience intense and frequent uncontrollable mood swings, and seemed to suppress my ability to feel full. I do not recall receiving any guidance or support in overcoming the emotional, psychological and spiritual challenges that this drug caused me over the years of my treatment.

Jelly Belly

Prednisone was only one of the medications used in my treatment plan to target the cancer cells. There was a little room I would go into where I would get what my family infamously called ‘the back needle’. I don’t need to go into detail about all the locations I received needles for you to get the idea that this process was difficult and scary. But the worst part for me was when they asked me to go on the scale.

My weight and height had to be tracked zealously. The nurses and doctors would make it abundantly clear: my height was too low and my weight was too high. I believed that I was to blame. In fact, there was a female oncologist at this hospital who had given me the nickname Jelly Belly. She probably thought it was funny and harmless. I felt an intense amount of self-disgust. I felt ashamed. I was so afraid. I couldn’t control my sadness or my grief or my fear. My life was spiralling out of control, and I believed that I had received the message loud and clear: if I lost weight, I would be good. I have always been a perfectionist with a deep desire to please those around me. I wanted to be a ‘good student’ at the hospital, and receive the message that I was finally an average height and weight. I was failing them, and I had to do better. I could not control my height, but there was something that I could control. I had to lose weight.

When Healthcare Leads to Suffering

When I look back on this story, it becomes abundantly clear how I developed an eating disorder by the age of eleven. I began carrying around a calorie book with me everywhere I went. I knew how many calories were in everything. The goal was to eat as few of them as possible. 

At that point, the cancer treatment had ended. The long-lasting psychological toll it took was never addressed, as far as I can recall. When the emotional and mental health aspects of illness are not addressed, this can lead to immense suffering:

• Childhood cancer survivors are at a significantly higher risk of a severe mental health event requiring an emergency department visit or hospitalization

• PTSD affects a subset of young adult cancer survivors. These survivors experience more psychological problems in general

Here’s the thing about trauma: those who experience trauma do not allow themselves to forget. We re-traumatize ourselves over and over again. I was ten years old and my goal was zero calories per day. I was a hard-working perfectionist, and I became incredibly proficient at starving myself.

The Quality of Life

The Diagnosis

The month leading up to my diagnosis of ulcerative colitis was not pretty. I was seventeen years old and had just returned home from visiting my grandparents in Florida over the Christmas holiday. I began experiencing intense abdominal cramping that became increasingly painful. I found myself running to the washroom more and more times each day. I was quickly losing energy. I couldn’t seem to find the strength to get out of bed, and the only other place I would frequent was the washroom. I began just staying in the washroom, since it became too difficult to travel back and forth from my bed. I tried to tell myself and everyone around me that I was fine, but I could no longer deny that something was seriously wrong. When I saw blood in my stool, that was the last straw, and I went to the hospital emergency room. 

When I finally received the diagnosis, I was relieved. I did not care what was causing my symptoms, I just needed them to end. The medical professionals discovered that the lining of my colon was inflamed and ulcerated. I was treated with a high dose of intravenous steroids, which quickly worked to repair the damage. I could finally breathe again. As I began to feel better, it was as though I was waking up after a natural disaster that had shaken me to my core. I had to assess the damage and understand this new world around me that was fundamentally different than the one I inhabited just a few weeks earlier. 

I now had a chronic illness. 

An insidious invisible disease that has no cure. I was given medication and told to take it each day, from now on. If only it had been that easy. I did not know what this diagnosis meant for me or my life. I was hungry for knowledge. I wanted to learn everything I could about inflammatory bowel disease and what was in store for me. I did not receive any answers to my questions. My fear and hopelessness quickly increased. 

That was how I found myself reading a medical pamphlet in the doctor’s office waiting room that stated that although one’s quantity of life is not affected by inflammatory bowel disease, the quality of a person’s life is decreased by this disease. Reading that statement honesty broke me. I don’t know how else to describe it. I could not stop thinking about it. I had been desperate for information about how my life would be affected by ulcerative colitis, and what I had learned was that it would be worse. 

There was no reassurance offered. No comfort or support during this dark time. Just the cold hard facts - my life as I knew it had come to an end.

Healthcare increases suffering when the ‘care’ is left out. 

Medical professionals in the modern western world are well equipped for the biomedical aspects of care, but the challenges of understanding and responding appropriately to the psychological, social and cultural dimensions of illness and health need to be addressed. Healthcare increases suffering when the emotional impacts of illness and disease are ignored. Healthcare increases suffering when the way that a patient receives devastating news is not considered important. Our bodies and minds are not separate, so why does our medical system treat us as though they are? 

Human beings can endure unimaginable hardship. But we need each other for support and guidance. We need to believe that others care about us and our welfare. We need to feel that there is hope in the darkness. That we are not alone. With this simple thing, we are unstoppable.

Navigating the System to Get the Most out of Your Health Care

This article was written by Dr. Deborah Mechanic, doctor of chiropractic and acupuncture provider. It was first featured in The Canadian Jewish News

What should patients do when their doctors have differing opinions and they feel like nobody is listening to them? It’s a problem that is being reported more commonly lately.

Over the past several years, there has been a shift in how health care is run. Family doctors have become the linchpin in a system where imaging or specialists are recruited for a variety of investigations, depending on symptoms. Health care has become a fine orchestra of specialized medicine, composed carefully, with the general practitioner (GP) as the conductor. Often, patients can feel lost in the system, or don’t know who the right specialist is for their concerns.

Their task becomes even more harrowing in more insidious conditions, such as oncology, concussions, headaches and organ disturbances. Patients often want to seek a second opinion, more information or an explanation, and find themselves at a loss for where to go. This is where the grey area begins. What happens to patients who don’t fit a black-and-white mould of what we expect a condition to be?

Montana Skurka, a Toronto-based patient advocate, deals with this problem every day. A patient herself at a young age, Skurka has unique experience to offer from both a professional and patient perspective. “The fast pace and isolating nature of modern society can be quite detrimental to our emotional, psychological and spiritual well-being. Our current health-care system was built to manage acute medical conditions and emergencies. An increasingly fragmented and specialized system is not equipped to view us holistically or guide us towards a life of wellness,” says Skurka.

In fact, in a report published by a group of patient advocates, in 2017, patient values were highlighted as an important aspect of care. The report recommended that patient values be included in every framework for evidence-based medicine. In actuality, patient values sit right at the core of evidence-based medicine, which is built on three tenets: best research evidence, clinician experiences and patient values.

Skurka notes that as more Canadians have become patients, death due to chronic diseases has increased at a rate of 14 per cent per year, and suicide rates are currently at 4,000 per year, or about 11 per day, on average. As well, she notes that three out of five Canadians above the age of 20 suffer from a chronic illness, while four out of every five Canadians are at risk for a chronic illness.

Research databases are filled with peer-reviewed literature highlighting the importance of patient perception on surgical outcomes, but it’s not far-fetched to apply this to conservative interventions. Chronic illness has quickly risen in our health-care system. Applying this research may indicate that patients advocating for their care and values is a strong predictor for successful treatment.

“It can be difficult for those who are not living with an invisible and chronic illness to comprehend the extent to which it can interfere with a person’s life and sense of self. It is common for patients to report that their loved ones and doctors do not adequately understand or validate their experiences,” says Skurka.

This takes a toll on mental illness as well. Skurka believes that another fundamental aspect of patient advocacy is “educating others on the mind-body connection and their own innate power to care for themselves.” Her practice involves encouraging equality between physical and mental illness and understanding that health and well-being cannot be neatly divided into these two categories. “There are significant resources dedicated to understanding and treating pain. However, pain and suffering are not the same thing. When our health-care system focuses on treating pain and ignores the suffering of patients, this can have devastating results.”

What can patients do to overcome this? The answer, as with most health dilemmas, lies in education. Education in health situations creates confidence, including the confidence to ask questions and have one’s voice heard. Building a relationship with a health-care professional that you know and trust is a great way to create a space where you can ask these questions and get the knowledge to have your voice heard.

The Expert

When I was seven years old, I was diagnosed with acute lymphoblastic leukaemia, a blood cancer that is the leading cause of cancer deaths in children. I am immensely fortunate to have been born in a city that has one of the best children’s hospitals in the world, and I received top-notch care by a large team of medical professionals. In a strange way, I look back at the years I spent undergoing chemotherapy with something akin to fondness; I was too young to grasp the severity of the situation and I had full faith in the experts who were fixing me.

Everyone was so kind, from Posey the Clown, to the nurses who became my friends, to the team of oncologists who allowed a hint of kindness to shine through their veil of intimidation. I was confident they all knew what they were doing. I knew they had everything under control because I was in a hospital, a place where experts (identified by their white coats and self-assurance) healed sick patients (identified by the balding heads of children and uncertainty of their guardians).

Two decades later as I reflect on that experience, I have realized that I learned from a very young age that I should not be trusted to take care of myself. After all, I was my own worst enemy. My bone marrow was making too many immature white blood cells, and I needed experts to repair the destruction my body had inflicted upon itself. To some extent, we all learn this lesson early on: parents know best, teachers know best, the government knows best… and some of us internalize this message more than others.

When one goes through a trauma such as childhood cancer, there is an understandable concern with treating the disease and tracking the side effects of the treatment. For instance, my height and weight were tracked zealously- I learned from an early age to fear the dreaded scale, but that is a different story- and I was followed for many years after treatment was completed to ensure that I was not displaying symptoms that would indicate relapse of the cancer.

There was much less of a concern regarding how the experience had effected my mental well-being. This seems perfectly reasonable to me. I probably wasn’t displaying any obvious symptoms of distress, and these were professionals who specialized in blood-related cancers, not psychology. Furthermore, who isn’t going to be affected negatively by this jarring experience at the tender age of seven? Perhaps I had been immersed in the world of mortality, death and suffering a little bit younger than what was expected, but surely once I left the confines of the hospital I would rejoin the ranks of innocent children and be on my merry way?

I had learned from a young age that I was the source of all problems, and that experts were the source of all solutions. It was not long after I completed chemotherapy that I began feeling completely and utterly out of control. This sense of intense anxiety manifested in many forms as time went on, and I continued to search for an expert who could fix me. Each time this failed, I grew more desperate. I have a sneaking suspicion that many people can relate to this experience in one form or another.

We live in a society of the expert. We look to experts to fix all our problems: our health, computers, fitness, business, family issues… and each of these individuals certainly occupy an important place in our modern culture. Progress and expertise have resulted in millions of people living longer and more comfortable lives. The form of leukaemia I was diagnosed with at seven was a death sentence until quite recently; it is now treated in children with a great success rate.

However, the proficiency and skill of an expert has its limits. It is only through mindfulness meditation and yoga that I have truly learned that I am the expert of myself. It seems so simple, but it took me two decades of searching for the perfect expert to realize that it was me. At first this seemed completely preposterous- I was the source of all my suffering and pain- I was clearly the enemy, not the saviour.

But after a few weeks of meditating, I began to learn how to inhabit moments, rather than constantly searching for distraction. I began to loosen the grip of control I held tight, and ironically, that led to a sense of greater peace and security. Meditation and yoga have taught me that my mind and body are infinitely wise; if I just tune in to the right channel, I can understand the lessons they are trying to bestow upon me. I will never again falsely believe that there is someone or something external to myself that can make me feel whole.

How I Learned to Stop Craving Control

I have always had a fascination with adrenaline junkies in the way I imagine an alien would be fascinated with the human race.

My mind is constantly taking me on a mental roller coaster throughout each and every day.

The thought that someone would seek stress inducing thrills is something I simply cannot relate to. A list of activities that I avoid due to the “buzz” they offer includes: drugs, theme parks, sad and/or scary movies.

The world is filled with so much danger, sadness and pain—why do some seek it out?

Rather than trying to understand the thoughts and feelings of others, I really should turn my pondering inwards. What all of these activities in which I avoid have in common is they require giving up a sense of control. Why do I crave control so intensely? I think many of us who have overcome difficult experiences in our lifetimes grasp for the reins of our lives in order to avoid pain.

Personally, I have gone through traumatic health related crises that enlightened me at a young age to the fact that danger lurks around every corner. I became keenly aware that, as human beings, we are incredibly fragile. I learned that I was a target and had to protect myself from any potential hazard and risk.

So I tried to gain control over myself and my surroundings. However, the more I’ve attempted to manage and oversee the elements of my life, the more out of control I have felt. This is because the world is completely indifferent to my demands. What I would like to happen in my interactions with others never seems to come to fruition.

Moreover, my own mind and body similarly do not heed to my commands. This feels like the ultimate form of betrayal. For some reason, trying to force myself to feel a certain way never quite works, and in the process I become my own adversary.

I turned to mindfulness when I was tired of the constant internal battle for control between me and the universe. It had become abundantly clear I was losing the war, and my mental and physical health were suffering as a result. A central tenet of mindfulness involves letting go of perceptions of what we think our life should be.

It is about taking our experiences as they come, moment by moment, in a non-judgmental way. In practicing mindfulness through meditation and yoga, I have begun the process of loosening the reins on control.

I have officially handed in my resignation for the position of authoritarian dictator of the Kingdom of My Life—after all, I was never very good at ruling it anyway. In the quest to control my life in order to avoid pain, I was inflicting a level of anguish upon myself that was cruel and unnecessary.

Who knows, maybe I will try bungee jumping now? On second thought, I think I’ll stick to ground-based activities. 

This blog post was originally published on Elephant Journal

Ben's Story: Dependence from Prescribed Opioid Use

This story emerged from research I presented at the Canadian Collaborative Mental Health Care Conference and was written as a guest blog post for the Addiction Assessment Psychotherapy Referral in Community of Toronto (AAPRICOT).

Each person who has faced addiction is an individual with unique life experiences and challenges that led them to seek solace in their substance of choice. We often hear about the devastation caused by addiction and dependence in the news with startling statistics. Behind these statistics are the personal stories of courageous individuals fighting battles we don’t always see.
 
Often these stories begin with pain. Many people live with chronic pain for a number of reasons. One group of people who face this complex issue are the 250 000 Canadians living with Inflammatory Bowel Disease (IBD). Crohn’s disease and ulcerative colitis, the two main forms of IBD, are autoimmune diseases that cause the body to attack itself and leads to inflammation of the gastrointestinal tract.
 
Abdominal pain is a common symptom of Crohn’s and colitis and is caused by intestinal inflammation, partial blockages and gut distention. There is no cure, no known cause, and little public understanding of the pain with which IBD patients must face on a frequent basis. Since there are so few options for the effective relief of this pain, many individuals with IBD are prescribed various forms of opioids while experiencing a flare-up of disease activity.
 
Ben’s story illustrates how this difficulty affects people’s lives. Ben is a Canadian in his thirties who has been living with ulcerative colitis since he was sixteen years old. As he has gotten older, the symptoms of his disease have increased in severity. Last year, Ben was very sick with a flare-up and was in unrelenting pain. He was losing weight at a rapid pace and was losing a dangerous amount of blood. Eventually, Ben was rushed to the Emergency Room where he was put on a high concentration of the injectable form of dilaudid, an opioid analgesic used to treat severe pain. He was relieved that the pain had finally began to subside.
 
Ben was quickly admitted to the hospital, and remained hospitalized for three weeks. For the entirety of his stay at the hospital he received an injection of dilaudid every three hours, whether day or night. Ben was not told about the risk of addiction, or given any information about the side effects of the medication that he had chosen to take to relieve his pain. By the third week, Ben had developed a physiological dependence on the opioids he was taking without being educated or made aware this would happen. He was never provided with any alternatives to this situation, and therefore was not able to make an informed choice about his treatment plan.
 
In order to leave the hospital, Ben made the decision to stop this pain relieving medication ‘cold turkey’ and quickly began experiencing excruciating symptoms of withdrawal. He experienced full body shaking, debilitating nausea, profuse sweating and an overall terrible feeling for about 24 hours. Ben developed Post Traumatic Stress Disorder (PTSD) from this hospitalization experience, and suffers from PTSD symptoms to this day. Ben has not received any support from his medical team for the psychological ramifications of this ordeal.
 
Despite the fact that this experience has left him with lasting trauma, Ben considers himself lucky. He is currently taking a biologic medication that is controlling the symptoms of his IBD and is no longer taking opioids for pain relief. Ben knows that many patients like himself are prescribed opioids and are never able to overcome the dependence, tolerance and addiction that is subsequently developed. He is now aware of the fact that opioid use, even taken as prescribed, can lead to dependency and various problems for individuals.  For individuals vulnerable to addiction who are prescribed opioids for chronic pain, the risk of addiction increases.
 
Ben is not alone; his story reflects a general trend. Research has found that among patients with IBD, opioid prescriptions tripled during a recent 20-year period. Unsurprisingly, heavy use of strong opioids among this patient group was a significant predictor of all-cause mortality. Another alarming study noted that Opioid Use Disorder (OUD) - related diagnoses are increasing among IBD patients. At one of the clinics studied, chronic use of opioid medications used by IBD patients to manage abdominal pain was “alarmingly high”.
 
What do we do for patients who live with pain? How do we treat them without fostering dependency and addiction? This is a grave issue that we must contend with in order to effectively address the opioid epidemic. Patients and healthcare professionals must work together to overcome these challenges. It is imperative that patients are provided with all of the relevant information regarding their treatment options, and that we begin to expand the options available for relieving pain. Connection is the cure. 
 

References: 
 
Burr, Nicholas E., et al. “Increasing Prescription of Opiates and Mortality in Patients With Inflammatory Bowel Diseases in England.” Clinical Gastroenterology and Hepatology, vol. 16, no. 4, 2018, doi:10.1016/j.cgh.2017.10.022.
 
Cohen-Mekelburg, Shirley, et al. “The Impact of Opioid Epidemic Trends on Hospitalised Inflammatory Bowel Disease Patients.” Journal of Crohn's and Colitis, 2018, doi:10.1093/ecco-jcc/jjy062.
 
Susman, Ed. “Chronic Opioid Use High Among IBD Patients.” Medpage Today, MedpageToday, 20 Jan. 2018, www.medpagetoday.com/meetingcoverage/ccc/70645.