Mental Health and Self-Care for Cancer Advocates

Each of us becomes involved in cancer advocacy because we are deeply personally affected by the devastating impact of cancer.

How can we do our work effectively, while simultaneously caring for ourselves as we navigate triggers and intense emotions?

This workshop offers a variety of tips and tools to support ourselves and one another’s self-care and mental health. It includes education on trauma and the nervous system, gentle yoga, mindful breathing, journaling and group discussion on themes explored.

This workshop was presented at the Health EMatters Conference for cancer advocates, held October 27-29th 2022 in Toronto, Canada.

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Chronic Illness and Mental Health: Breaking the Vicious Cycle

When we face a chronic illness, it does not just affect the specific body part in isolation.

Oftentimes, we face a myriad of physical, mental, emotional and social challenges, and our Western healthcare system lacks the resources to guide us through this challenging time.

This is why it is so important for us to educate ourselves and learn how to break the vicious cycle, feeling empowered in our own care.

In this presentation, I outline my personal story and share tools and resources to help you navigate your way to health and wellness.

Thank you for listening, and I would love to hear from you!

Moving Beyond the Patient Identity: My Journey with Chronic & Mental Health Challenges

I had the opportunity recently to speak with medical professionals across Canada about what it is like to live with a chronic illness, specifically Inflammatory Bowel Disease. I began facing serious health crises when I was a young child, and they continued in different forms throughout my teens and twenties. Throughout this time, I have greatly struggled not only with painful symptoms and sometimes even more painful treatments - but also the emotional, mental and spiritual toll of living as a patient.

I am on an ongoing journey to heal these wounds and grow out of my former identity as a passive victim of circumstances. Here is my message for healthcare providers and patients alike, to become allies and empowered in our own care.

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.

 

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

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:

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.