The stigma effect: how mental illness and size interfered with my cancer diagnosis
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 I am 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 and hospitals, and of receiving treatment or care. 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 help.
For years, I’ve been avoiding regular check-ups and routine procedures simply because I had no faith in the medical professionals who were looking after my wellbeing. Each time I found the courage to discuss my mental health and women’s reproductive concerns with my family doctor, all I heard was that if I just lost weight, it would all go away.
My doctor would shake her head at me, advising that I shouldn’t even bother with weight-loss programs because I was beyond help. Instead of encouraging me to consider different options, 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.
When I spoke about other health concerns, my doctor blamed them on my weight problem. The most common one was the drastic changes happening with my menstrual cycles. I was never sent to a gynaecologist or had any tests done. Instead, she stated that if I wasn’t so fat, the pain I was constantly feeling would lessen. Instead, she prescribed medication (Naproxen and iron) and sent me 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 felt 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 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 was unbearable. I vividly remember times in the office where my doctor would come to the waiting room area and apologize to her other patients, explaining with hand gestures why she had to spend more time with certain people because of their crazy anxiety and panic issues. She was sorry for all the noise and wasted time that this caused.
Words can’t describe how those conversations with her made me feel. It was hard enough to muster the gumption to go there in the first place, only to be treated like I wasn’t worth the same medical attention as a patient who was skinny and mentally healthy. 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, my doctor’s behaviour is common. There is a real bias where a patient’s weight determines how they’re treated in a doctor’s office. Where in the Hippocratic Oath does it state that a doctor will only treat the ill if they are thin? That a doctor has the right to determine who gets proper treatment based on how much a person weighs.
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 periods were so excruciatingly painful and heavy. I had to be admitted immediately. After a lengthy hospital stay, countless tests, 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 the “c” 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. Everything else got distorted after I heard the word cancer. I don’t remember hearing the rest of the conversation. I felt numb and almost fainted, but my mom ran over and grabbed me before it all went dark.
The phone fell into my lap, and I was paralyzed with fear. Shock and disbelief set in almost instantly. 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 to me by my loved ones. 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 who don’t make it?
I couldn’t talk about it. In the days to follow, I became withdrawn and just wanted to disappear. I spent days crying, asking God why this was happening to me. It took me a month to wrap my brain around the fact that I had a disease growing inside of me and that I had no control over anything that was about to happen. I had often imagined scenarios like this, but now that those fears were realized, they surpassed any thought I could have ever mustered up in my mind.
I had three major surgeries in 2021, with the final one posing complications. After a day in recovery, there were suddenly unexplained issues with my heart, lungs, and kidneys, 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.
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. I now add Post-Traumatic Stress Injury (PTSI) to my ongoing list of mental health issues.
(PTSI is the alternate name – Post-Traumatic Stress Injury – that refers to the same set of symptoms as PTSD. According to one definition, “the main differences are the conceptualization of what caused the symptoms. PTSD refers to a disorder, while PTSI refers to a biological injury.”)
I remember vividly sitting all alone in my hospital room, staring out my 15th floor window. For hours, I watched everyone scurry about the streets. 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 who filled all the rooms, on all the floors, in St. Michael’s Hospital, who were sick and alone. It’s a feeling that I never want to experience 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 feels so unfair. Cancer took away the choice of motherhood, and it also ripped away my womanhood. I fully understand that 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.
Today, I am 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 ways you couldn’t even imagine – good and bad. Looking back now, I know I can do hard things and face my fears with hope. My life before and after cancer has been a difficult one, but with the love and support of my loved ones, my medical team, and my therapy support group circle, I know that I don’t ever again have to fear going through anything alone!
The poor treatment of patients and the stigma surrounding women’s health happens every day, and it needs to stop. It is for this reason that I share my story today, because there is a desperate need to raise awareness around the stigma of women’s health. There are many women today who will not get the help they need simply because they are too afraid to see a doctor. The fear of judgement and of being misunderstood and poor-quality patient care is a very real thing in our world today — and it must change.
In the areas of women’s health and reproductive health, our healthcare system, I believe, is in desperate need of significant reform. Increased awareness, support, and funding for new programs in these areas are vital to promoting women’s well-being, not just in Canada but 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.
I dedicate this article to Dr. Andrea Simpson, gynaecologic 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. They renewed my faith in doctors, and because of that, I will never again settle for anything less than what they gave me. I could not have made it through this journey without them. I wish I never had to hear the word “cancer” in my lifetime, but since it was to be a part of my destiny, I am grateful that at least I had this group of medical professionals 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 weren’t for them.
If you enjoyed this post check out Women’s mental health awareness.