The Cocoon

I am a 48-year-old female who has suffered from depression, acute anxiety, and an eating disorder most of my life. My mental disorder is distinct in that it is hyper-sensitive to death. This suggests that most of my anxiety stems from worries about my health, disease, and mortality. Now I know what you’re thinking. It is not so uncommon or unique. Well, what you don’t know is that although my anxiety stems from these things, I also suffer from iatrophobia and nosocomephobia—the intense fear of doctors, hospitals, and receiving treatment or care. Therefore, this means that I live with the fear and anxiety that there may be something wrong with me, but I am too afraid to seek out or get help.

For years, I’ve been avoiding regular check-ups and routine procedures simply because I had absolutely no faith in the medical professionals that were looking after my wellbeing. Each time I found the strength and courage to discuss my mental health and women’s reproductive concerns with my family doctor, all I ever heard was that if I just lost weight, that it would all go away. During appointments, my doctor would continuously shake her head at me, advising that I shouldn’t even bother with any weight-loss programs, because I was beyond help. Instead of encouraging me with different options to consider, the doctor suggested gastric sleeve surgery, because I wasn’t mentally capable of losing weight naturally. It was my doctor’s opinion that I didn’t have the strength to do it any other way.

There were several other conversations I tried to have with my doctor, which she also tried to blame on my weight problem. The most common one was about the drastic changes happening with my menstrual cycles. I was never sent to a gynecologist or had any tests done. Instead, she openly stated that if I wasn’t so fat, the pain I was constantly feeling would lessen. The only assistance I received were prescriptions for Naproxen and iron supplements and was sent on my way.

But my weight wasn’t the only thing that bothered my doctor, apparently my mental illness did not sit well either. The anxiety and panic I couldn’t help but feel around medical professionals upset her. It was all in my head and completely my fault, so I should just cut it out! She called it being very disrespectful and hurtful. It was difficult enough to deal with society’s stigma surrounding mental illness, but the fact that I was now having to face it in a doctor’s office too, was unbearable. I vividly remember times in the office where my doctor would come to the waiting room area, and apologize to the other patients, explaining with hand gestures why she had to spend more time with certain people because they had anxiety and panic issues. She was sorry for all the noise and time wasted, while signaling to the room that we were crazy.

Words can’t describe how those conversations with her made me feel. It was hard enough to muster up the gumption to go there in the first place, only to be treated like I wasn’t worth the same medical attention as a skinny patient, because of my weight. I understand now that I should have been stronger and advocated for myself harder. I should have insisted that I get tests done or be referred to a specialist, but I didn’t. I should have looked for another doctor. I should have done a lot of things, but I couldn’t because I was too afraid.

Unfortunately, this sort of behavior happens to a lot of people, by many doctors. There is a real bias around a patient’s weight determining how they’re treated in a doctor’s office. I must have heard a thousand stories this year alone; from others who’ve experienced the exact same thing I did – which made them shy away from seeking help in the future. Frankly, this treatment of human beings disgusts me. Where in the Hippocratic Oath does it state that a doctor will only treat the ill if they are thin? Where is it said that they have the right to determine who gets proper treatment based on how much a person weighs?

When COVID-19 hit the world, mine somehow became a little more peaceful. It meant that I didn’t have to put myself through any unnecessary punishment by having to go see my doctor.

In February of 2021, God and the universe collaborated without my knowledge, and forced me to face some unsurmountable things. After collapsing on the floor of my home one night, I was rushed to the hospital for treatment and what turned out to be an unbelievable diagnosis.

I was told that I had several large masses growing around my uterus and ovary area, that were very badly infected, which is why I collapsed. I also had a large ventral hernia (which I already knew about after self diagnosing myself a year prior) and had something called endometriosis, which is why my period cycles were so excruciatingly painful and heavy. All of which meant that I had to be admitted and seen by a specialist immediately. My worst fears were becoming reality. There I was, sick, in a hospital all alone because of COVID, and about to undergo some scary testing. Little did I know, that was only the beginning.

After a lengthy hospital stay, countless tests, blood transfusions, and a biopsy, I had my results. In July of 2021, I was diagnosed with endometrial cancer.

When they say that the first time you hear that word, your world falls apart, it is the understatement of the century. Your world doesn’t just fall apart, the earth opens beneath you and swallows you whole. After I heard the word cancer, everything else got distorted. I don’t remember hearing the rest of the conversation. I was numb. I think I almost fainted, but my mom ran over and grabbed me before it all went dark. The phone fell into my lap, and I felt as though I was paralyzed. I didn’t even cry at first, I was just in utter shock and disbelief. How could this be happening to me? That’s what most people say, I think. But it wasn’t farfetched.

Deep down, I had always feared that something was wrong, I just couldn’t bring myself to do anything about it. Now, I had no choice. It was real, and I just didn’t know how on earth I was ever going to get through this.

And so, it began. All the common slogans you typically hear on social media and in TV commercials were now being said by my loved ones to me. They told me that I could beat this, to say fuck you to cancer, and that the survival rate for the type of cancer I had was high and positive. But what do you do with all the fear in your heart? How do you get past the thoughts that maybe, you’re not going to make it, and will become a part of the other statistics – the ones that don’t make it?

I couldn’t talk about it. In the days to follow, I became very withdrawn and just wanted to disappear. It took me a month to wrap my brain around what was truly happening to me. To fully understand that I had a disease growing inside of me. That I had no control over anything that was about to happen. I had imagined scenarios like this in my head a million times in my life, but now that those fears were realized, they surpassed any thought I could have ever mustered up in my mind.

I have undergone 3 major surgeries in 2021, with my final one posing complications. After a day in recovery, my vitals became compromised. There were suddenly issues with my heart, lungs, and kidneys that were unexplained, and I found myself in the ICU, fearing for days that I wasn’t going to survive. It was like a scene from an ER movie. Doctors everywhere, working on me, talking out loud, trying to save me. There was even a phone call made to my brothers, just in case I didn’t make it through the night. But I did make it, and the ride continued. It was all so surreal.

I have so many memories of being in the hospital. Some great ones, but mostly ones that are still the cause of many of my nightmares to this day. I cannot drive through downtown Toronto without having flashbacks of that horrible night when I thought my life was going to end. Now adding PTSI to my ongoing list of mental health issues. I remember so vividly sitting all alone in my hospital room, staring out my 15th floor window for hours. Watching everyone scurry about the streets, trying to get somewhere. I sat there watching people living their lives in their condos and office buildings, being social with their friends and families. I remember thinking how happy and healthy they all looked, and how much I envied them. I often wondered if they ever thought about us – the patients that filled all the rooms, on all the floors, in St. Michael’s Hospital. That we were sick and alone. It’s a feeling that I never want to experience ever again.

The cancer forced me to have a full hysterectomy and I am now in surgical "forced" menopause. I will never have children. That is a realization that hurts beyond words. I wasn’t ever set on a decision to have kids before, but now that the choice has been made for me, it just feels so unfair. Cancer took away the choice of motherhood, and it also ripped away my womanhood. I fully understand that the surgery was important, and the hysterectomy was necessary to save my life, but it just feels like such a high price to pay. I wish I could have had another choice. What I really wish is that I could have had a doctor that I trusted, who cared enough about me to have possibly changed this outcome.

Besides the hysterectomy, I am now anemic. This was just one of the many side effects of the cancer medication I was on, that kept me in a state of daily menstruation for a period of 5 months, prior to my final surgery. To date, I am still fighting to get my hemoglobin, ferritin, and red blood cell levels back to normal. I struggle with hair loss, massive heart palpitations, extreme fatigue, dizziness, and bad headaches – not to mention an increased number of daily panic attacks. It’s been a long process, but I am getting through it.

Today, I am 9 months cancer free, and I hope I remain that way forever. Nothing in the world can ever prepare you for something like this. It changes you in so many ways – good and bad. You will never be the same again. Looking back now, I know that I can do hard things, and can face my fears with hope. But thankfully, I didn’t have to do it alone. I had an incredible support circle, and that made all the difference.

I have an abundance of things to be thankful for, and at the top of that list are the people who saved my life – God and my medical team. From the beginning, they gave me the courage, knowledge, and focus I needed to get better. The amount of love and support I got from this group was unlike anything I have ever felt before. They gave me confidence in medical professionals again. And although I was one of many patients, they always made me feel cared for and important. My feelings mattered; my fears were valid. The love, respect, and appreciation I have for this group cannot be defined by words. I am so grateful for all that they’ve done and continue to do for me.

My life before and after cancer has been difficult, and I have required some assistance dealing with everything that I’ve been through. Thankfully, I was introduced to an incredible team of social workers, who helped me navigate through the trauma. I am so grateful for my weekly sessions, and for the new support groups that I am now a part of. We have all become a family, and we are all storytellers. I think it’s important to listen to and share stories of your journey with others. It has helped me take back control where I thought there couldn’t possibly be any. It all starts with the first step. Today, I deal with everything that comes one moment at a time. I try not to worry so much about the future anymore, because it’s not promised to any of us. Instead, I fill my days with being happy in the present and go on from there.

I wanted to share my experience in the hopes that it will inspire other women to stand up for themselves, regardless of their fears. Your feelings matter and your fears count. It’s important to find a doctor who advocates for mental health and is open to doing whatever it takes to make you comfortable enough to see them and get the help you need. That regardless of the number that appears on the scale, you are worthy and deserving of the best health care. So, I urge you to interview all your medical professionals, until you find the right fit for you. This is what I have done, and it’s made all the difference. It is so important to have a positive, nurturing medical environment, where you can feel safe letting your guard down with your doctor. This is your life, and you can find people to help you live it as healthily as possible.

The poor treatment of patients and stigma surrounding women’s health happens every day and it needs to stop. It is for this reason that I share my story with all of you today, because there is a desperate need to raise awareness around the stigma of women's health. There are many women out there today, who will not get the help they need simply because they are too afraid to see a doctor and get help. The fear of judgement, being misunderstood and poor-quality patient care is a very real thing in our world today- and it must change. Our healthcare system, in the areas of women's health and reproductive health, I believe, is in desperate need of significant adjustment and reform. Increased awareness, support, and funding for new programs in these areas are vital to promoting women's well-being around the world. I hope that my story will light the way for other women to follow and give them the courage they need to advocate for the care they deserve.

More and more women today shy away from speaking to their doctors about their mental health and issues surrounding their reproductive systems. It is vital that women feel comfortable speaking up about issues surrounding anxiety, depression, and their periods. They shouldn’t be told that what they feel is all in their head, or to just "suck it up" when it comes to the pain and inconsistency of their cycles. We also need to insist on yearly PAP tests. Contrary to what doctors tell you, they are necessary, and you are well within your right to request more than one if you believe that something is wrong.

If you suffer from Nosocomephobia or Iatrophobia, know that you are not alone. There is help. Look for a good therapist or social worker that can help you cope with these types of anxieties and traumas.

My journey is far from over, but this chapter of it is. You see, when you're diagnosed with this life-altering, life-sucking disease, it is hard for anyone to determine if it's ever gone forever. So, you have to live with the trauma of what once was, and what will be. Many try to tell you not to think about it, to think positively, and manifest it into extinction for good, but it's not that simple. Only people who've been through cancer can truly ever know what it's like (pre, midst and post). The fear is always there, and I know now that it's only natural to have some fear surrounding this.

But today by God’s grace, I am seeing it from a new perspective. In some strange way, I was healed both inside and out, through that fear. It’s funny how life has a way of taking the ugliest thing that could ever happen to you and morph it into the most beautiful version of you there ever was.

Those of us who have gone through cancer know that you will never be the same again. You just can't be the same person as before, but it doesn’t mean that new version of you is lessor than the one you were. The new me is weirdly grateful to the disgusting monster that invaded my life. I know now that it gave me the opportunity (and the courage) to finally live.

One of the most important things I have learned very recently is that whenever you are suffering don’t ask God why you’re suffering, instead, ask God where he is taking you in that suffering.

I was diagnosed a year ago today, so it was only fitting that I published my story on the anniversary of the most horrific day of my life. I still cannot believe how much I have been through, but I know one thing for certain - God was with me the entire time! He orchestrated my collapse in 2020, and set the wheels in motion for this entire journey. Although fear was present, faith and love took precedence over everything. He taught me so much over the past 2-years. Lessons that I will never forget! I know now that life is a true gift, and that with faith anything is possible. He took my fear and showed me that even amongst the darkness, there is always light. There is so much to be thankful for and I am blessed to still be here to re-direct my life in the manner that I've always wanted to live it in.

I know that everyone looks at faith and their beliefs in their own way. My way was his way. There were things along this journey that were so unexplainable to others, but were made so clear to me. Moments transpired that were only meant for my eyes, ears, and soul to witness. What I do know is that the word "miracle" was said an abundance of times throughout this ordeal, by many, to explain all the things that surrounded my treatment and recovery. To me, it was no coincidence that of all the hospitals, specialists and treatment centers out there, I was lead to St. Michael's. It was God's plan for that moment in my life.

I’d like to dedicate this article to Dr. Andrea Simpson, gynecologic surgeon at St. Michael’s Hospital, in Toronto, Canada, and her entire team of professionals who gave me back my life. It is because of this team that I now have the courage to advocate for my health. Throughout my entire journey, they showed me daily what true patient care should look like. They renewed my faith in doctors, and because of that, I will never again settle for anything less than what they gave me. Their care and concern for me was nothing short of magical, and I could not have made it through this journey without them. I wish that I never had to hear the word cancer in my lifetime, but since it was to be a part of my destiny, I am so grateful that at least I had this group of medical professionals right there by my side, the entire time. Each day, they gave me hope, positivity, and the strength to fight for my health.

I wouldn’t be here if it wasn’t for them.

This is for all of you, my angels at St. Michael’s.

Gynecology Team:

Dr. Andrea Simpson

Dr. Elizabeth Miazga

Dr. Emma Skolnik

Dr. Azra Shivji

Dr. Sarah Freeman

ICU Team of Nurses:

Carol-Anne Fraser

Natoya Thompson

Jasmine Pullon

Social Work and Trauma Care:

Nicole Schroeder

Jenna Mackenzie