Wednesday, November 16, 2022

Exploring Men's Mental Health - Movember

Movember is an annual event that occurs during the month of November to raise awareness for men's health issues. Encompassing such as prostate cancer to mental health. Whether you are growing a moustache this November or not, it is equally important to recognize men's health concerns that are often unspoken of in regular conversation. Specially we want to focus on the current conversations around men's mental health. 

Mental health is a complex topic and often one attached with significant stigma. Men's mental health has significantly struggled in the past due to stigma and societal expectations, but we are seeing it slowly come to the forefront in recent times. Awareness and action is a joint effort so, regardless of facial hair and gender, this Movember is a time to reflect on how we all can understand our own mental health and be of assistance to those around us. 

We want to share a very special story to emphasize the importance of Movember and Men's mental health this month. Adrian Teare is a passionate advocate for men's mental health and offers his insight and support to everyone going through any ups or downs in life. We encourage you to reflect on the following concepts discussed by Adrian and recognize your support systems, because YOU are not alone!

.........

"I have participated in Movember in some form or another for the past several years. Originally, I just wanted an excuse to put my masculinity to the test by growing facial hair, which I quickly discovered was a fruitless venture. But over the years I began to delve more into the significance of this month of men’s health awareness, particularly as I began to find myself drawn to shining light on men’s mental health. 

Mental health has seen a significant increase in attention over the past several years and has entered the public discourse in a meaningful and productive way. I have been so encouraged by this as a young man and am myself a proud benefactor of a variety of mental health services which have vastly improved my quality of life. However, this is not the case for everyone. While on my psychiatry rotation, I encountered two different gentlemen who were admitted due to suicidal ideation and attempts. I was astonished that this was their first encounter with mental health services. It had reached the point where they no longer felt they could continue to live before they finally accessed services. Furthermore, both of them expressed to me several times how embarrassed they were to find themselves in this position. They described seeking help for their mental health as making them feel weak. This broke my heart because this is such a common theme when it comes to men’s mental health. I have encountered countless other young men who refuse to access mental health services because they believe it is an admission of weakness. I know, because I was one of these young men for a long time. 

So much of this comes back to how masculinity has been defined in our society. Men have historically had an unwritten expectation to put on an impenetrable armour each and every day and never show any signs of weakness or vulnerability. Be the stoic provider who never cries, never shows fear, and absolutely never asks for help. While this may have been a survival technique historically, we are now past the era of needing to rely on such tactics. Yet despite this, it is mentality that persists for so many men. 

Anyone who grew up playing competitive sports, or spent time in a high school gym locker room, will have early core memories of toughness and machismo being the currency by which the world of men operated. To show a softer and more vulnerable side was deemed less desirable and so the best option was to put up a faรงade, which reflected what their surroundings had told them it looked like to “be a man”. As someone who grew up in this culture and never felt traditionally “masculine” I am acutely aware of how much shame can exist around being sensitive and emotional in the world of men. As a result, when I began to first experience my own challenges with mental health, my fellow men were the last people I considered turning to. This is a huge barrier to many men receiving the help they need. We just don’t talk to each other about this stuff as much as we should. I have had some beautiful experiences in recent years where I’ve shared my own struggles with mental health to a male friend and I’ve seen a look of relief flood across their face as they come to the realization that they are not alone. Sometimes the best support is to know that you’re not alone, that others have made it through this and are willing to help them do the same. 

I always found it fascinating that even myself, a man who is quite in touch with his emotions and has become much more comfortable with vulnerability about my mental health, had an incredibly difficult time asking for help when I needed it. I resisted counselling for years because I was embarrassed to admit to a professional that I actually had problems that I couldn’t manage alone. I resisted starting medication for even longer, despite the fact that I was learning about the very real benefits of these medications in school and would have recommended them to a friend or family member in a heartbeat. In my mind, I still felt like taking medication was “giving up” or admitting “weakness” in some way. When I began to finally start taking medication, I noticed myself hiding it from people. That is how deep the stigma runs. I felt an inexplicable shame around my challenges with mental health, a shame that I would have continued to struggle with in silence and alone had I not been pushed to seek help by some incredible people in my life. 

That is the true tragedy of men’s mental health, so many are struggling in silence and many don’t have the people that I had to push and support them. It has been well documented in countless studies that men are far more likely to complete suicide than women. The gentlemen I saw in the inpatient psych ward were the lucky few who were saved from an untimely death by emergency mental health services. It should never get to this point. Your first encounter with mental health support services should never be the emergency room or the psych ward. If we find ourselves reacting to crises like this so frequently, it is a sign that something is not right with mental health care and the support we are currently offering the men in our society. More importantly, something is not right with the way our society has built in gender norms and stereotypes which make so many men resistant to seek help. 

Folks that have discussed this topic with me before know I could talk about this ad nauseum, because it has become such an area of passion for me. There are single conversations I have had over the course of my life that I can point to as life altering for myself, and if I can be that conversation for one of my fellow men struggling with their mental health then that is more than enough reason for me to keep talking about this every time I am presented with an opportunity. Words can save lives. 

So this month, if you’re growing a moustache for Movember, let that moustache be a conversation starter. If someone asks you why you are growing, take that opportunity to share with them the importance of men’s mental health.

The more this conversation permeates into our society, the more we will move towards a place where the shame and embarrassment that plagues so many men when it comes to seeking help will fade away. On a personal note, if any of my male friends, peers, colleauges, etc have a chance to read this, please know that if you need to talk I am always more than happy to listen to what you have to say and share insights from my own personal experiences, for whatever those are worth. You are not alone!

Adrian Teare - Phone: 306-380-0697 Email:akt801@gmail.com"

..........

Take a moment at sometime this month to look back at your strengths, your accomplishments, your support systems, your emotions and times of feeling low. How did you deal with the ups and downs?Look around you, you are not alone. Please reach out to your supporters, counsellors, us at InvincibleWeAre or Adrian Teare, because we want to listen to you and be there for you in your low moments and your happy ones. 

~ D&R

Wednesday, November 2, 2022

Painting My Pain - Chronic Pain Awareness Week

Chronic pain, as the word implies, is a constant, never-ending experience. November marks the beginning of chronic pain awareness week and InvincibleWeAre is proud to hop on the awareness train to spread chronic pain awareness, resources, and stories to you all. 

What is pain? It is an unpleasant sensory and emotional experience associated with potential tissue damage. We all feel pain, it is a protective mechanism. The pain experience depends on an individuals situation. 

Chronic pain is not related to tissue damage. It's like a car alarm going off without a definitive reason. Similar to a car alarm, chronic pain can be distressing! it occurs when a sensitized nervous system sends pain signals, even though all the blood work and imaging is normal.

What is this connection between the brain and pain? Neuroplasticity is the ability of the brain to recognize and rewire. This allows us to master skills, for example learning to play a sport or piano. Repeated practice allows the brain to rewire itself. However, a super sensitive nervous system repetitively sends pain signals to the brain. This continuous repetition creates a pathway for pain signals to reach the brain with more ease. This is known as maladaptive neuroplastic change. LIke a bad habit, this maladaptive change can be addressed. 

Why is chronic pain important to learn about? Many, Many, Many people around the world struggle with chronic pain, and most of them silently. 

  • 8 Million people in Canada live with chronic pain
  • 1 in 5 Children struggle from chronic pain leading to missed school and activities
Chronic pain is disproportionately represented in people with lower socioeconomic status, those living with mental health conditions, those working in trades or veterans who have experienced trauma, people with disabilities, and women. 

Chronic pain is a real and ongoing battle. It may not seem like a tangible concept to some, but knowing that it exists and can be distressing is an important step to understanding the millions of people around us to struggle with chronic pain on a daily basis. 


Painting by Pain by RA

"A crushing weight of loneliness sits on my shoulder, I long to share my pain, but words go amiss.

I decide to paint my pain

I find the fiercest of red to paint the center of the canvas, with uncontrolled strokes, the center of the canvas begins to radiate the burning sensation that consumes me.

I am drawn to the brightest and most blinding silver, without a second thought linear strokes are made harshly and randomly to the canvas. I can sense the shooting pains that can make a grown person wince.

With a dash of purple to the edges of the canvas, the bruising and numbness caused by my pain are displayed. 

To complete the painting, a splash of black is added for the agonizing loneliness my pain has caused.

Today I painted my pain.

I found myself avoiding yellow, blue, green. All the colors of joy and a possible beautiful day in the meadow scenery. 

Today I painted my pain. 

I felt a great relief"


Helpful resources:
                                                                                   
                                                                                ~InvincibleWeAre, D&R

Tuesday, October 25, 2022

Mission Invincible: Meet the Editors



Alone we can accomplish so little, with a partner we can accomplish so much and with a team our  accomplishments are boundless.  

Without our editorial team our InvincibleWeAre initiative is incomplete. 

So today we would like to introduce a few of our very dedicated and motivated new editors to the team. While we cannot introduce all of them here today, we recognize the behind-the-scenes efforts our editors have put into every post you will read in the future. Simply put, they are the much needed heart to our mission. Below we present to you a few anonymous introductions from the editors themselves and what keeps them motivated!

..........

"After a summer of qualitative research on patients’ illness experiences, I knew I wanted to find an outlet to continue amplifying patient voices. When I heard that the InvincibleWeAre team was looking for volunteer editors, I had to join the team!" ~R.S

"Throughout my professional and personal life, I have learned that teamwork in a healthcare setting is crucial, and that the most important part of that team is always the patient. Every time I meet a patient, I make an effort to understand them as a whole person, and to advocate for their care to be tailored to their individual needs, preferences, and values. Patients are so much more than the sum of their medical conditions. After hearing about the InvincibleWeAre team reinforcing the importance of patient-centered care by creating a space for patients to share their stories, I knew that this was a team I wanted to be a part of. In addition to believing in the principles of this group, I am also happy to be able to learn from these patient voices by reading their stories as an editor!" ~M.S.

"I joined the InvincibleWeAre team to listen to, learn from, and help amplify patient voices. It is fascinating to me how everyone – strangers, passers-by, patients in hospital lobby waiting rooms or beds – has a story that is as complex and vivid to them as mine is to me. And as a future healthcare provider, I realize that eliciting patient narratives is requisite for practicing individualized, compassionate, and holistic medicine, and beyond that, for connecting with patients, one human to another. I am grateful to the patients willing to share their stories – their experiences, their triumphs, and their pain – and hope that InvincibleWeAre makes them feel seen and heard. Undoubtedly, their voices are a source of strength for those with similar stories and insight for care providers on the other side of the hospital bed." ~N.D.

..........

Together with this growing InvincibleWeAre team we are eager to keep you engaged with more anonymous personal stories and reflective pieces.

Wednesday, October 5, 2022

Nothing Can Stop Me: Type 2 Diabetes Mellitus

You must remember our previous story on Type 1 Diabetes Mellitus - this next anonymous submission is a story about Type 2 Diabetes Mellitus. While these two conditions share similarities in the pathophysiology, they are two vastly different entities with regards to patients' lived experiences. 

Type 2 Diabetes is caused by complex interactions between genetic and environmental factors. Similar to Type 1, this disease have everything to do with that pesky little molecule, insulin. Insulin is a key player in managing our blood sugar levels in a narrow range. A few extra molecules of sugar, in the form of glucose in the blood can be catastrophic for an individual, so insulin plays a very critical role. Without insulin, imagine the body like a ticking bomb, where just one extra molecule of sugar and life's on the line. In Type 2 Diabetes Mellitus, cells in the body become "insulin resistant" meaning they are no longer able to respond to insulin in order to remove sugars from the blood stream. Without any effective method to remove circulating sugars from the bloodstream, every meal adds to the sugar levels. This has dramatic effects on every system in the body, including those involved with the kidney, brain and heart. Staying healthy becomes a daily task almost comparable to needing to think about taking every breath rather tan breathing automatically. 

..........

"I immigrated to Canada at a time when everything was going well back home, but we wanted a new opportunity. Before setting foot in Canada, I had not imagined the emotional, physical, and family stresses of being a new immigrant. At that time I was vaguely aware of my diagnosis of high blood pressure and diabetes. However, with the burden of work and adjusting to a new country, my health was the least of my priorities. I would work 20 hour days to make ends meet. With a hectic schedule, regular exercise was a struggle. My health began to deteriorate. 

One year after immigrating I was officially diagnosed with diabetes and started on medications. With work stress still looming above my head, earning for my family was my top priority and my body was the lowest on my list. So once again, health took a backseat. On top of this, the medications I had been prescribed were just not suited for my body. They were making me gain weight; nothing I would do could bring the numbers on the weigh scale lower. 

With my BMI creeping above 35 and added thyroid and cholesterol complications, I was recommended to get gastric sleeve surgery. Oh, it made the difference I was looking for but only for about 2 years. During this time, moving to a new place and starting a new job brought me back to the beginning with increased work stress and little time to maintain the good habits I had managed to develop over the last few years. 

With as many diagnoses as I have and with no end in sight, because that's what Diabetes does to you, it is inevitable that these conditions can push you down physically and mentally into some darkroom. But I am thankful and so grateful for my biggest tool in the toolbox that has kept me strong mentally through all these winding roads of life. After all "a strong mind can carry a weak body, but only having a strong body cannot carry a weak mind". The Art of Living Stress Management program provided me with the perfect combination of meditation and yoga to get above the negativities that were keeping me pinned down. With the Sudarshan Kriya my mind was no longer in constant fear of what next disease my diabetes would make me prone to. 

I truly believe that building inner strength and having faith that there is a higher power taking care of you is so important to overcoming obstacles with a smile. Meditation offered me that boost of inner strength that I was longing for but could not find anywhere else. 

I know whatever has happened in the past cannot be changed. It was bound to happen with all the factors at play in life, but I know I can improve the future. I have started to find balance and have raised physical health higher on my priority list. Scheduling ongoing pickle-ball games, going for walks, and being considerate of my diet have all become more important for me. Above all, after experiencing the side effects of medications, I took my health in my own hands and searched out alternative ways for healthy recovery. I believe that while medication has it's strengths, it is not the end-all be-all. Without lifestyle, mental wellness and nutritional changes it is impossible to obtain true recovery one would aim for. Medications just cannot help you unless you first help yourself!! That has become my motto, and over the years I have read through various research articles, visited homeopathic and Ayurvedic doctors, all in an attempt to understand myself and how my body works.

When people see all the conditions I have they ask "How do you smile?"; "It's not impossible" I say. 

                                                                                    - Anonymous

Tuesday, September 20, 2022

Constant and Continuous: Chronic Back Pain

It is all too often that we may underestimate the symptoms associated with chronic conditions, especially when acutely symptomatic individuals seem to be in more distress. This week we aim to shed light on chronic pain which is all too often overlooked. 

Chronic Pain: Several factors can affect an individuals feeling and perception of pain including physical and psychological factors. Chronic pain is known to arise from various stressors to the body including trauma, infections, or autoimmune conditions. With ongoing chronic pain, significant impacts on the quality of life can be experienced by individuals usually at the expense of their own enjoyment and ability to function. Chronic pain is not something to underestimate as merely a "feeling". Several neurological changes in the body cause the body to become more and more sensitive to an ongoing pain stimulus. And often the progression of this sensitivity never recovers with individuals finding themselves combating the pain for the rest of their life. 

..........

"As an adult in their early 30s, I wake up feeling like I have been hit by 80 years of life. I am exaggerating, but some days it truly feels like so. 

In my late teens I was part of a car crash. Everyone in the car, including myself, survived. However, that day on the cold pavement I lost my "normal" youth. I broke several bones including a couple of vertebrae. The bones healed, the bruises faded, and eventually one day I looked "normal". But, I had changed. I had chronic pain in my back. 

My dream had been to travel the world in my twenties. I wanted to explore this planet we call home, go on back packing trips across Europe, relax on a beach in a tropical country and visit historical sites globally. With this accident, the recovery and back pain, this dream became bleak. 

After my recovery I visited my family doctor, numerous ERs, and urgent cares, but honestly I found no relief with medications, chiropractors or massage. At one point, I started to realize that my consistent visits to ER might come off as drug seeking even though that is not my intention. 

I spent numerous months on a wait list to see a physiotherapist that wouldn't cause me to go bankrupt, as I was barely working. Once I started the exercises, I found that relief I was looking for. I feel that I truly needed motivation to keep up my exercises and fight the demon within me that kept yelling "stop trying, what is the point". I do feel broken some days and that life is unfair. I was a healthy person with no illness, I rarely went to see a doctor but this accident changed my life by taking away my good health that I used to flaunt. 

Today, I feel better but there are days when the pain is bothersome. At this point I have decided to make my peace with "chronic back pain". I am a healthy individual. This pain can not stop me from continuing to live the life that i dreamed of for myself."

                                                                            - Anonymous


Tuesday, September 6, 2022

Sweet to the touch: Type 1 Diabetes

You must have heard of diabetes. Its incidence and prevalence is increasing in North America. But did you know there are two very distinct types of diabetes. Type ONE diabetes mellitus and Type TWO diabetes mellitus. Our story today is from an individual that has conquering the highs and lows of a type one diabetes mellitus diagnosis. 

Type I diabetes mellitus is a chronic condition in which the body mounts an attack against itself. The pancreas is the prime victim where destruction of the insulin-producing cells in the pancreas cause the body to have difficulties with automatically managing blood glucose levels. Insulin is a key player in managing the amount of sugar molecules present in the blood after meals, and when this player is MIA, external precautions are needed to prevent blood sugars from going into the DANGER zones. Type 1 diabetes is usually diagnosed in early childhood. The diagnosis brings with it increased risks for several neurological, heart, kidney and eye complications down the road along with a dependence on insulin therapy and strict monitoring of everything you eat. We can only imagine the discipline and strength one must need to tackle this beast of a diagnosis.

..........


"I was 13 years old when I was diagnosed with Type I Diabetes. After that life was a whirlwind of diabetes education, numerous follow ups and INSULIN. I want to take this opportunity to focus on how my experience with this diagnosis has been and my point of view on living with diabetes. 

As a teenager with diabetes, I was angry and scared. Angry that I got diabetes; angry that I couldn't be a "normal" teenager; angry at my fate. Alongside all the anger, I was petrified of what this disease could do to me. I have seen family members on dialysis because diabetes ruined their kidneys, I have seen my grandma deal with diabetes related nerve injury and I have seen her hospitalized for too low and too high blood sugar levels. I woke up most mornings anxious how my day will go, will I remember to take my insulin, will I eat enough, did my mom calculate the sugars in my meals for the day. It felt as if diabetes and blood-sugar levels were the center of my life. I prayed for a miracle to wake up one day and be healthy and that all this was just a terrible dream. 

Although I was headed towards a hollow place of self pity and loathing, my family and diabetes nurse prevented me from becoming a diabetic grinch. My nurse advocated for me to receive an insulin pump so I no longer had to worry about giving myself the insulin injection. My family started doing daily dinners that were friendly to the diabetic diet for my sake. I don't know if my dad truly enjoyed his meals but the smile on his face during dinner gave me so much comfort and took away some of my anxiety in that moment. 

As I got older, I created a routine for myself that helped me manage my diabetes and live my life. However, a change in life occurred when I started university. I stayed at home and drove to campus daily, I decided not to move cities or provinces for post secondary to maintain my support system. With that, I did not realize that there would be changes. I made new friends and no I did not disclose my health issues to them. I watched my friends eat out carefree and I wanted to fit in so I went out too. I stared at menus and noticed vegan, vegetarian, gluten free options but I had no idea what on the menu was diabetic person friendly. So simply put I ate the tiniest bit of salads while my friends devoured their pizzas or burgers or pastas. I did not want them to know I had diabetes which is why I never bothered to ask about the nutrition values or calculate the carbs in a potential meal. I know to some this may seem so minute, but to me it was a reminder that I am different because of my disease.

Now as an adult (-ish?), I reflect back and realized how much at first I allowed my diagnosis to take over my life. As I grew to understand diabetes I became more in control of my life. How you may ask? Well understanding what is diabetes helped me understand the purpose of my management plan and this definitely reduced my anxiety surrounding my treatment and helped me realize that with good control I have low chance of those scary hospitalizations. I obviously would not be able to achieve this huge milestone without the supports that I have gained during this journey. 

The one main take away I want to get across is that, YOU are in control of your body, you diagnosis or whatever the circumstance. At times you definitely might not feel this to be the case, but with support and change in perspective and a little tweaking of your definition of quality of life, it is possible to regain that control!

Now my diabetes does not control me, I control it!"

                                                                                                    -Anonymous


Resources:

1. https://www.jdrf.ca/

2. https://www.diabetes.ca/about-diabetes/type-1

Tuesday, August 30, 2022

The Difference of Emotions: Our Biases and Depression

Depression is an isolating pain. A pain affecting the soul, a pain that consumes all hope and leaks away pleasure and ambition. Individuals impacted by it have described the experience as: "Most closely connected to drowning or suffocating- but those images are off mark"- Styron and "The word depression is a wimp of a word for such a beastly experience."

First let's define some terms! Emotions are short lived, intense and triggered experiences whereas mood is a global feeling that colours an individual's perception. Mood can influence emotions. It is vital to know that there is a stark difference between a person who is depressed about something and a person who is globally depressed!

So why is it that the word "depression" in mainstream media and common conversation is overused to describe "just feeling low" and what is the harm of this? 

We express our emotions through a wide variety of words. The statement "I am sad" was not an uncommon way to speak about such emotions; but with the evolving years the term "sad", similar to "happy", has begun to lose its true place. It has become a common word, a word that doesn't seem to encompass the entire experience of sadness. And rightfully so, our experiences are all different. But here, we start incorporating stronger phrases, phrases such as "I am depressed". Following the flow of things, it hasn't taken long for the phrase and everything associated with it to become more and more status quo. Feeling depressed is all of a sudden a normal, transient feeling. One that anyone can "get over". This way of thinking is harmful because it washes away the experience of a person feeling truly depressed and invalidates their mental health condition. This stigma hinders the ability to seek help and effectively recover. 

Depression disorders are real, organic conditions of the psyche of a person. There are many things that can hinder with the levels of the neurotransmitter serotonin in the brain. Thus depression mood disorder is beyond the expression of the emotion sadness as a reasonable reaction to an event in life. The inflicted persons are truly in pain and suffering. This is not a mood that one can just "get over". The cause is complex and the path to recovery is not straightforward. If anything, the path is full of painful hurdles that need to be overcome and at any point the person can stagnate or start reverting if not closely monitored.


https://www.boredpanda.com/depression-through-art/?utm_source=google&utm_medium=organic&utm_campaign=organic
Illustration by Robert Carter, depicting what depression feels like. Many patients have described a feeling of entrapment and inability to ignore the internal cues. These internal cues can become so distressing that they become a risk factor for life. 


Depression disorders in medicine are diagnosed using the DSM-V criteria. This criteria tries to capture the experience of depression outside of stressors, substance use and medical conditions. The term used is "Major Depressive Episode" to describe a two week incident of non-stop symptoms and "Major Depressive Disorder"  if continuous episodes and the doctors have ruled out other psychiatric illnesses. So as you can see, there is a process to diagnosing depression disorder. It is not as simple as labeling a low emotion especially one secondary to life stressors as depressed. 

Opening our eyes to our own biases and perspectives is even more important today, where mental health is a true crisis. We can only empathize with individuals struggling with mental health by taking a moment to recognize the importance of individual experiences and stopping ourselves from labeling emotions as "nothing to worry about" or transient. Every emotion matters and being reflective of your own or others' accounts of emotion can truly go a long way in today's day. 

                                                                                        ~ D & R

Thursday, August 18, 2022

Army Activate, the Battle of Allergens: Eosinophilic Esophagitis

This week we bring you a story from another strong and resilient individual. The condition brought to the spotlight is one that is barely covered in medical school lectures, but it has one of the most complex management plans. 

Eosinophilic Esophagitis (EoE) is a chronic inflammatory condition in which the esophagus becomes sensitive to a wide variety of allergens. When in contact with such allergens the eosinophils, a type of white blood cell (the immune system's first-line army), begin to infiltrate the esophagus resulting in an immune response and inflammation. Eosinophils are normally not present in the esophagus so the presence of these cells on endoscopy almost guarantees this diagnosis. When the esophagus is inflamed it is highly irritable and leads to significant narrowing, making it difficult to swallow food, causing reflux, and possibly spreading the irritation to the surrounding structures.  

.......

"I was a picky eater as a child. There seemed to be something about the taste or texture of certain foods that didn't sit quite right with me. It was always the same story. We would sit down for dinner and my mom would be determined to make sure I ate. Being a picky eater was just not an option. Five-year-old me would have never imagined how events would unfold years later. By the time I was in high school, I had lost 60 pounds and could hardly eat a slice of bread without choking on it. They said I had a swollen thyroid and bad gut health, but no one could answer my question; WHY? I thought perhaps I was sensitive to certain foods and slowly home cooked meals became my go-to. 

But things were in for another twist. Moving away for university brought with it many challenges, including more cafeteria food and less home food. The processed foods and cross-contamination of ingredients took a toll on me every time. I found myself drifting to coffee, salads, or unhealthy alternatives for comfort. And once again, I was searching for a reason for my symptoms. Could it be the braces this time?

Not too long after, I had my first episode of vomiting, hyperventilating, and passing out. And after that, the trips to the ER became regular. It was becoming difficult to explain the situation to my family without worrying them. I continued to try to find answers, and while there were many answers I didn't know which one was correct. Was it allergies, was it the stress of being a student (a diagnosis I was usually given in the ER), or something else?

I am thankful for my family doctor who got the ball rolling by ordering my first endoscopy. The procedure was unexpectedly awful. Both the adult and pediatric endoscopes were unable to go down my inflamed esophagus, an otherwise highly unlikely complication. From what was visible, they told me I had close to 200 eosinophils in my esophagus. Thus the diagnosis was made, eosinophilic esophagitis, a diagnosis that is rarely seen in my age group. Endoscopies became more frequent, I was given medications with several side effects, and I started an elimination diet with not much relief of symptoms. Allergy tests indicated that I had allergies to a lot of environmental agents, but often these tests can be indeterminant for many with EOE. And so, I was let go without further follow-up and referred to an allergist. 

Several months in with recurrent symptoms, I came across a research article by a professor at my university. She advocated for me to receive an endoscopy to confirm the diagnosis for targeted management. If I had not seen her that day my esophagus would have been so swollen I would have needed an NG tube. The very thought of being unable to eat was terrifying. I was started on esophageal dilatations every 8 weeks with the goal of bringing my esophagus from 5mm to 15-20mm. My roommate became a big part of my recovery during a mentally tasking 1.5 years of dilatation procedures. 

Two weeks ago I swallowed a pill for the first time in 8 years. I CRIED. The idea of swallowing something without having to chew it and not having reflux was life-changing. It may be a little thing for others, but for me, this was the biggest accomplishment and a much-needed reassurance. 

Being followed by the doctor I have now, who does research on EOE, was a boon. You can see when someone has a passion for something and hers was to help people not just by managing symptoms but by stopping them altogether. I have never had a doctor meet me after every procedure and explain how the events unfolded. She took what I wanted to do in life, where I was living, and made it all work miraculously. 

Since my diagnosis, I have seen the support of my family, friends, and physicians grow. I have been able to join focus groups and read up on EOE to be my own health advocate. It means the world to me to have such supportive and understanding people who have been there through each stage of this journey. I am proud of myself for surpassing the mental challenges that I constantly encountered over the last few years. It was not an easy or predictable journey, and neither will it be going forward, but I feel strong knowing how I had risen above the challenges and knowing that I am surrounded by so many people who care."

.......

                                                                                    - Anonymous

Wednesday, August 10, 2022

The Circuit of Strength

Invincibleweare


When we take a look around everything seems to work in networks, in groups, in pairs. The light bulb has a long circuit behind its brightness. The trees have many roots that help nourish and keep the trunk standing strong. Similarly in humans, nothing strengthens us more than the presence of supportive loved and cherished people. As a human with a search for social interaction, this network can be an asset and the pillar for strength at times of need. 

Living with chronic illness is difficult, especially because there is rarely an end in sight. The diagnosis is usually something that must be lived with and "endured". Now in such a situation you can endure it with pain and torment or take the wheel and guide yourself to a path that you would like to see yourself on. Here we talk about some methods in developing a "circuit of strength" that have shown to be helpful. 

Disclaimer: the advice provided here is not a replacement for professional help/ advice from physicians, nurses, counsellors or allied health care providers.  


Engaged coping: Building your team!

Erin Skinner, a psychologist from the USA defines coping as a collection of purposeful, volitional efforts that are directed at the regulation of aspects of the self and the environment under stress" (1). In simple terms, coping is how an individual reacts to stress. There are both good and bad coping habits. We will focus on the good coping method of seeking help and taking lead of your health. Countless research articles and even personal experiences have shown time and again  the importance of a support system in dealing with stressors. If anything research has shown that disengaging or passive coping (i.e. avoiding or denying the stressors) leads to poor outcomes (2). 

This entails:
Reaching out to family or friends that you trust. For example, with a diagnosis of diabetes including family and friends may help with controlling diet and improving exercise to manage blood sugar levels. Why walk the path alone, when there is someone willing to walk it with you in a supportive way!!
Creating dialogue with your doctors to lay out expectations and hopes. This way realistic goals can be set and placement of a safety net accomplished. The latter will create a better watch on medications and changes to health.  This is an example of where being proactive is better than reactive!

Vulnerability and determining the nature of stressors

Chronic illness presents a wide array of threats and emotional demand. So a key step is to determine what stressors are present and of them which are the most distressing (3). This can help specialists such as counsellors create a specific plan to address these stressors. Remember stressors can be from physical symptoms of diagnosis but also the emotional aspect of prognosis, how to fit in society with an illness and fear of recurrence. Here vulnerability is not synonymous with "weakness" but rather a state of openness to our illness/situation such that ability is formed to accept help!

Invest in yourself!

A significant part of managing most chronic illness involves lifestyle and behavior changes in diet, exercise, sleep and mindfulness (4). At times these modifications can feel taxing, but investing this time for your holistic wellbeing will help you gain the sense you are in control and reduce anxiety. The time spent on yourself will also improve physical well being. This large payout of improved quality of life is worth the time and energy!


These are just a few ways to help create a well tuned circuit of support and thus strength in facing chronic illness. 

***Feel free to share methods that have worked for you in the comments!***

๐Ÿ’ฎ๐Ÿ’ฎ๐Ÿ’ฎ๐Ÿ’ฎ๐Ÿ’ฎ๐Ÿ’ฎ๐Ÿ’ฎ๐Ÿ’ฎ๐Ÿ’ฎ๐Ÿ’ฎ

For all those families, friends, colleagues, and mentors who have stood by us with a supportive shoulder; We cannot thank you enough for your contributions that  turned a negative thought process into a positive one. In reflecting on our experiences, we wanted to share a poem dedicated to all the people that play a supportive role:

Far too many times I have felt alone
But you have been there for me
Far too many times I stood below
But you pulled me up from within

Never too far, never too slow
A network is what you have been
A network of strength, courage, and joy
One that brings a new perspective in

Alone I am not, for this network I have
Nothing can take it away
The strength, courage, joy, and love
I hope to share with another one day
-DB




                                                                                                            -InvincibleWeAre

References:
1. Skinner EA, Zimmer-Gembeck MJ. The development of coping. Annu Rev Psychol.
    2007;58:119-44. doi: 10.1146/annurev.psych.58.110405.085705. PMID: 16903804.
2. Compas BE, Jaser SS, Dunn MJ, Rodriguez EM. Coping with chronic illness in
    childhood and adolescence. Annu Rev Clin Psychol. 2012;8:455-80. doi:
    10.1146/annurev-clinpsy-032511-143108. Epub 2011 Dec 20. PMID: 22224836;
    PMCID: PMC3319320.
3. Tobin, D.L., Holroyd, K.A., Reynolds, R.V. et al. The hierarchical factor structure of the
    coping strategies inventory. Cogn Ther Res 13, 343–361 (1989).
    https://doi.org/10.1007/BF01173478
4. https://www.health.harvard.edu/staying-healthy/10-steps-for-coping-with-a-chronic
    condition

Tuesday, August 2, 2022

Bardet Biedl Syndrome, I don't think you have heard of me: Rare genetic disorders


In the 1920s, most of UK was recovering from the World War I but two doctors were occupied studying two families with unique features and persisting obesity. Those doctors were Bardet and Beidl. They noted that these two respective families had members with obesity, polydactyly (more than 5 digits per hand or feet), and retinitis pigmentosa (this isn't a spell but rather an unfortunate cluster of processes that lead to loss of the cells that "see" light and color and thus lead to vision loss slowly). 

.......
"I am grateful for this opportunity to voice my experience as a person with Bardet Biedl syndrome. Let me start from the beginning. My parents were new immigrants to Canada when they were expecting me. I have heard from my parents and siblings how doctors would say "I'm sorry your baby has a genetic disorder" or "Your child will not live to see past the age of 16 years." At some point I am sure my family felt hopeless especially when they saw their 6 year old child unable to speak or walk and by this age having already experienced numerous seizures and countless hospitalizations.  

To my geneticist, I was a child born with a ciliopathic rare genetic disorder and all they could offer were stats and reassurance. My presentation was so rare that even resources were scarce. However, from the support I got from my school teachers, language and speech specialist, neurologist, plastic surgeon and pediatrician, I felt invincible! Living in the amazing country that Canada is, I was provided with "shields" to protect me and help me face the world. 

Today, I am in a life skills program at high school and I have lived past the expiration date of 16 years that the doctors recited. I am able to do most normal functions even though it took me a lot longer to gain those skills. I do have the unfortunate barrier of "night blindness" and living in a province where it gets dark after 5pm for 6-7 months this can be challenging. Sometimes I do get sad seeing my siblings and peers getting drivers licenses and I am not allowed to drive. However, the Canadian Blind Society not only took me for training session but also equipped me with the resources I need when out after dark. 

I love mountains. Usually I feel like a mountain, standing strong against the violent of winds. Of course mountains signify the ups and downs that everyone faces in their lives!

I have felt alone, I have felt scared and I have in painful tears asked my creator why he made me like this. Honestly, it is hard but I have come to terms with my disease and I know I am unique. I bring a perspective to this fast paced world that we all fit in and life isn't a race. I am not broken nor am I last. 
Reflecting back on my life, my sister thought of a poem that I wanted to share with you.


I am rare, not less.
I stand out from the crowd,
Sometimes it hurts when people stare, I must confess

I shine through the layers of struggle even if it appears like a mess
It's a lonely journey but I am proud
Proud that I created an address.

An identity of being rare, resilient and no less
I am grateful for this life and I say this loud,
I am rare, not less. 

I am hopeful this short read was informative and hope you learned something new about a rare genetic disorder that has no cure or treatment. If you would like to learn more about Bardet Biedl and rare genetic disorders, please see the links below."
.......

Helpful Resources From the Anonymous StoryTeller: 
https://www.frontiersin.org/articles/10.3389/fped.2018.00023/full

https://rarediseases.org/for-patients-and-families/information-resources/rare-disease-information/


                                                                                              - Anonymous

Tuesday, July 26, 2022

No Stone Too Tough, No Mind Too Weak: Gallbladder Disease


You may or may not have come across the topic of gallstones online, in conversations, or through personal experience. Before we share another personal story let us tell you a little about gallbladder disease. 

Background on Gallbladder diseases: Place your hand on the right side of your abdomen above your last few ribs. Your gallbladder, a small pear shaped organ in close proximity to the liver, lives just underneath where the palm of your hand is positioned. The gallbladder is responsible for storing and releasing stored bile salts every time you eat a meal with fats. This means everything from french fries, to eggs, to cheese, to lentils, will get the gallbladder working to different extents. Gallbladder disease encompasses a wide variety of conditions related to the gallbladder including biliary colic and acute cholecystitis. Often the villian in such conditions is a stone, also known as a gallstone, that blocks the passage of contents out of the gallbladder. In such situations, the blocked gallbladder is contracting but unable to empty itself, leading to inflammation and scarring. Symptoms of an acute cholecystitis often result in sudden and ongoing pain mainly on the right side of the abdomen, with more pain when palpated. Nausea, vomiting, and abdominal discomfort can also be accompanying symptoms, among many others. Many people, including yourself, may currently have a gallstone, but while many do not even noticed the presence of their stone, in a few individuals this stone can cause frequent and severe symptoms and pain.  

"Symptoms creeped up on me like an uninvited guest. Nausea, vomiting, intense abdominal and epigastric pain. In fall of 2020, I had my first gallbladder attack, not knowing what it was at that time. It started in the evening and lasted until early next morning. I laid there in bed, holding my body in a tight ball, crying, fearing that I was perhaps having a heart attack. It's a tendency to think the worst when you don't have answers, right? Since then, every second or third night the symptoms would return. I was frightened to think that something could be wrong with me. 

Several months and several doctor appointments later, I was still being prescribed medications for gastric reflux and anti-spasmodics. I am no advocate of doctor shopping, but I was fortunate to have two separate family physicians from different provinces (one from my permanent residence and the other a temporary one during school). It took almost 13 months for an ultrasound to be ordered to investigate my symptoms. It always shocks me how several failed medications and months later, gastric reflux continued to be the top cause of concern. It was as if no one was listening to my story and blaming my symptoms merely on my diet and hormones. I couldn't be more grateful to my current family doctor who offered me the space to speak about my symptoms and to offer my opinions on the diagnosis from what I had researched. I believe that as a patient we must do our research and be in charge of our health and offer this insight to a knowledgable physician who can direct our thoughts towards an appropriate diagnosis.

I had learnt about gallstones at that time. In the books, it looked like a "not too bad" disease. A small stone can't do much after all right? I was sure I did not have gallstones but something worse. I definitely had underestimated the condition based on the words. 

I had my first ultrasound in November 2021, a positive scan for acute cholecystitis. I was having another gallbladder attack but a milder one this time. "Go to emergency if it gets worse" they told me. You hear the word 'emergency' and suddenly there is a gush of adrenaline. "Is this really that bad, what is going to happen?". Going from thinking of a gallstone as 'nothing to worry about' to this, felt like one big punch. And indeed, a few days later I went to emergency, having a gallbladder attack. As I sat there on the triage bed I was tearing up. The nurse came to ask me about my pain. Seeing me teary she asked if the pain was really bad, and yes it was a 9/10, but the tears were of fear. I was extremely terrified where the day would lead me. 'Is today going to be the day for the surgery?'

Now, 9 months after my diagnosis, I have been offered surgery for gallbladder removal (the fear kicks in again and being alone in the city doesn't help decrease the nerves to take up that surgical option). Luckily my surgeon is phenomenal and has been very accepting of my wish to control my symptoms non-invasively until the need arises to do otherwise. I feel proud looking at how far I have come on this journey from daily nausea, vomiting, and intense pain all night, to more infrequent episodes. 

There are days when I would rapidly search for an answer so I could point to the one mistake I made that led to this condition. I was looking to blame myself, when in fact there may be nothing to blame at all. I thought disease meant you did something wrong, but disease is just another one of destiny's obstacles to test your strength.

My experience with gallbladder disease has taught me a few very important lessons. This would differ between people, but most importantly dietary adjustments has been a big part for me since my diagnosis. It took 3 months for me to test foods and suffer through gallbladder attacks in order to realize my trigger foods. I still love a good slice of cheesy pizza, but realizing when I can eat it and when it may be a trigger requires weeks of self-reflection. Physical and mental health have also been a priority for me. Believe it or not, a good 1 hour workout and a 30 minute meditation has gone a long way in decreasing my symptoms but also making me stronger. Cortisol, the stress hormone, can really add gas to the fire, so there could be nothing better than making meditation my best friend. Recently, I have had immense success with medicinal amounts of turmeric. I do caution that it could increase your symptoms, but for me it has really helped reduce the underlying abdominal discomfort that is caused by the inflammation. Above all, good family support has helped me get through all these months since the first symptoms.

The biggest thing to remember is to not give up. Change takes time, whether that is your nutritional habits or incorporating physical and mental health into your daily routine. Do your research because nothing is better than being in charge of your own health, and seeking advice from a medical professional can only make your efforts from fruitful. 

I continue to infrequently have gallbladder attacks, but with a stronger mind and dedicated reflections for future change I have passed each attack with ease. Not a person on the street could know that I had a gallbladder attack last night, because I have learnt to live with it like everyone else."


                                                                                        - Anonymous

Schmidt Syndrome: An Uphill Battle Against Myself

I was maybe 18 years old when my mom passed away. She would often complain of being tired and say she is tanning by sitting indoors. This wa...