Ending The Stigma

This op-ed appeared in the Ottawa Citizen on January 28, 2014.

 

On Dec. 29, Christopher Peloso, the 40-year-old husband of former Ontario deputy premier George Smitherman, was reported missing.

“Freedom from depression has been elusive for Christopher,” Smitherman tweeted on the eve of the 29th. “We fear for his safety.”

A followup tweet issued just hours later linked to a brief statement which confirmed that Peloso had been found dead, noting (the family) would “find comfort somehow in knowing that he has found peace from the depression that has wreaked havoc on his mind.”

At Peloso’s memorial, Smitherman eulogized his late husband, telling those assembled in the Toronto community centre he would “not be afraid, in Christopher’s name, to tell his story and to tell our story … A man took his life because the pain in his brain was unrelenting.”

Smitherman addressed those who might be dealing with depression: “If you’re holding something back and you bring it out into public life, it is the first step and it is cathartic and it is powerful.”

To that end, Peloso’s father, Reno, spoke of his son, noting “Chris suffered from depression and committed suicide and there is no shame in that.”

Not only was this a powerful message to send during a period of such personal grief, but it was a remarkable, and incredibly necessary, break from the norm; of glossing over the heart of the tragic situation; of speaking in euphemisms and dancing around the issue that caused so much pain, such unrelenting anguish, that the only reprieve Peloso thought he could find was through death.

Though Peloso’s loved ones were widely lauded for their openness in discussing his lifelong battle with depression, the notion that suicide be addressed so matter-of-factly proved disquieting for many. Some feared that accepting Peloso’s final act without judgment somehow glorified it, that failing to attach shame or scorn to the suicide essentially validated, or worse, encouraged it.

These widely held, though unfounded, concerns demonstrate why it was necessary for Peloso’s family to address his illness — including its end — so candidly: to break the stigma about what it is to live with, or die from, mental illness, so that others might find the courage to seek help for their own demons, or, for those who have lost love ones in a similar manner, to leave behind the guilt or sense of having failed the deceased.

And breaking the silence, erasing the stigma, is what Bell’s Let’s Talk campaign on Jan. 28 is all about.

One in five Canadians will experience some form of mental illness in a given year. Yet a report from the Canadian Medical Association revealed that only half of Canadians would tell a friend if they had a family member with a mental illness, as compared to disclosing a family member’s diagnosis of cancer (72 per cent) or diabetes (68 per cent). But why is that? Like any ailment, mental illness manifests in a number of ways, and to varying degrees of severity. Not every cancer is treatable; broken bones don’t always heal correctly the first time. Some diabetics are able to manage through diet alone, while others require multiple shots of insulin, daily. That lack of understanding of what constitutes mental illness, especially when it presents as a chronic or severe condition, is what drives the stigma surrounding it. And the apprehension about openly discussing the more extreme cases of mental illness — those who self-harm, commit suicide, are plagued by intrusive, sometimes violent thoughts, are crippled by rituals or compulsions — only furthers the ignorance surrounding such conditions.

The same CMA report found nearly a third of Canadians reported being fearful of being around someone suffering from a mental illness; almost half believing people use the illness as an excuse for bad behaviour, and fewer than half reporting a desire or willingness to associate with a friend who was diagnosed with a mental illness.

How terribly sad. It should be noted, however, that such beliefs aren’t because people want to exclude or isolate those suffering from a mental illness. Only recently have people begun to buck the societal norm of only speaking of mental illness in whispers, of “othering” those who suffer. In many cases, people want to better understand; they are genuinely interested in learning more about what it means to live with a mental illness, about the challenges faced not only by those diagnosed, but how their experiences, in turn, affect the lives of those around them.

The problem is, they are unsure of what, or how, to ask.

They don’t want to intrude, are afraid of offending. So they instead make assumptions, quietly draw their own conclusions.

Which then leads to misconceptions, feeds into the fear, and further perpetuates the stigma. This is why Bell’s Lets Talk campaign is so important: It provides a platform for a genuine conversation between those living with mental illness and those who’ve never experienced it. Those afraid to ask questions can follow as people share their stories of living with the disease, silently gaining a better understanding of what it means to have a mental illness. Many who suffer in silence find strength in seeing others talk openly about their own struggles and, in turn, find the courage to open up, and if they haven’t already, seek help.

The family of Christopher Peloso understood the value in having a candid dialogue about the illness that plagued him, and ultimately claimed his life. They were, in essence, doing exactly what the Let’s Talk campaign aims to accomplish on a larger scale: To end the stigma surrounding mental illness, talk openly and honestly about all aspects of the disease, foster a better understanding about life with mental illness, and to encourage those who are suffering to reach out.

There is no shame in having a mental illness, and there’s no weakness in seeking help.

And there’s no better time than now to talk about it. So Let’s Talk, Canada.

 

Yes – Let’s Talk

Though dismissed by some as a cynical marketing ploy, Bell’s Let’s Talk campaign not only succeeded in raising $4.8 million for mental health initiatives, but also provided a forum for canadians to share their stories, reach out for help, and address the stigma associated with mental illness.

That conversation, seeing people I know and respect open up about either having/had issues with mental health, or knowing – and still loving – someone who does, was, to me, so much more valuable than monies raised.

Though mental illness itself can, and does, destroy lives, the stigma attached to those afflicted can be just as devastating.

For me, the stigma was nearly fatal.

My story is long and complicated, so I will do my best to include just the information necessary to understand my experience and explain how it relates to where I am today. I don’t mind going into greater detail and am more than happy to elaborate/answer questions people might have regarding my experience with mental/emotional illness, but I think it’s important to stay focused on the topic of stigma for the purpose of this post.

At the age of ten I was diagnosed with an anxiety disorder, and by eleven I was in the throes of depression, battling a severe eating disorder. I was hospitalized for 3 months for the anorexia at age twelve, and again for two months when I relapsed at fourteen — a relapse due, in part, to the added burden of OCD.

I’d been an incredibly talented competitive dancer (tap, jazz/contemporary, ballet) up to that point – also competing as a swimmer and in soccer in both my age group and the one above – but found the anxiety related to international travel demands made continuing on this path impossible. I continued with all non-competitive aspects of dance and scaled back my commitments in soccer and swimming, but the competitive void was soon filled with what had long been my passion, though had always played second fiddle to dance: gymnastics.

With the eating disorder conquered, my dietitian continued on as my sports nutritionist and closest confidant. She’d been by my side since I was eleven, and I trusted her.

My athletic career as a gymnast included some of the best years of my life. I was healthy, strong, and successful, and for the first time, I was comfortable being me. I liked myself. I loved that I could push harder than everyone else; I loved the battle between mind and body when engaged in intense conditioning regime, because I knew I could push my body to beat my mind, every time. I craved the exhaustion, loved the pain, and found a sense of accomplishment in the fact that, though I wasn’t the most advanced gymnast in the gym — I dedicated myself to the competition realm later than others, and though it wasn’t in my future a few of the girls I trained alongside went on to become Olympians, others to successful NCAA careers — I was the strongest, the most dedicated, the hardest working and fittest athlete there, and was recognized as such. I was held up as the epitome of physical and mental strength; Where others had to be pushed, I had to be told to slow down. Where others were urged to work harder, I had to be reminded – if not forced  – to rest, to take a break. To let myself relax.

And that felt incredible.

What didn’t feel quite as wonderful was what was happening physically, on the inside. I’d had digestive issues for some time, but always assumed it was due to the physical demands of my sport. After a few years of progressively worsening symptoms, however, the discomfort in my abdomen was replaced by as intense and chronic pain, and I was bleeding. A lot. Every time I landed I felt as if my intestines were being torn from my body.

I know I should have gone to the doctor at that point. Hell, I should have gone long before it got to that point, but I didn’t. I was afraid I’d be told to scale back training; that I’d have to stop competing. And, like any dedicated athlete, I had dreams to pursue, dammit!  I didn’t have time for a sabbatical.

When things really started to fall apart, they crumbled fast. I was losing weight at an alarming rate. What used to be an endless source of energy, my body had nothing left to give. My coaches, my family, my friends all assumed I’d begun to relapse back into an eating disorder, despite the fact I was eating, down to the last gram, the same diet I’d been following for years – the one set out by my personal dietician, who was herself at a loss to explain what was happening.

I’d expected my (relatively new) family doctor – let’s call her Dr. K – would be eager to start testing for whatever was going on, but she quickly chalked it up to an anorexia relapse. Why? Because that was the simplest explanation, and the history of anorexia apparently clouded every visit I’d ever had with her.

When I told her of my intestinal symptoms she brushed them off as psychosomatic; when I showed her the blood, she insisted it was menstrual (even though, as is typical of elite female athletes, I was amenorrheic).

One day, Dr. K decided she was going to admit me to the psych ward. I told her I’d go voluntarily on one condition: that she let me meet with a gastroenterologist while I was there.

She reluctantly agreed.

The GI doctor took one look at me, felt around my abdomen and ordered an immediate scope. Lo and behold, the colon was indeed bleeding, and there was some sort of abnormality – an ulcer? tumor? Chron’s? – in the ascending colon.

A biopsy was ordered but came back inconclusive (or so I was told by Dr. K) and the GI fellow left for a previously scheduled mission trip before I could speak with him again.

I was referred to the GI department in London, but Dr. K refused to send the GI report, so I was met, yet again, with skeptical eyes. The history of anorexia, and whatever had been written by Dr. K, told them all they needed, or rather, all they wanted to know.

I had a J-tube inserted to provide nourishment via machine, but when the weight still hadn’t returned, I was blamed for somehow sabotaging the effort. I soon developed a high fever, and a grotesque odour was emanating from the site of the tube. I had so little energy I couldn’t even make it to the car under my own power. I arrived at emerge in London where I was shuffled to a back room where I remained for hours, splayed out on a gurney, gasping for breath, as the doctor responsible for the tube’s insertion told me that he “will not remove a feeding tube from an anorexic; you are just trying to get out of eating.”

Having remained silent until that point, my mother demanded I be evaluated by someone who hadn’t seen my chart, who didn’t know of the eating disorder I’d battled, and let me stress once again, successfully overcome years ago. She got her wish, and the emerge physician quickly determined the J-tube was infected and I’d developed sepsis. The tube was immediately removed and I was put on a course of IV antibiotics and, after about a week in hospital, was sent home.

By now my family was quietly preparing for my death. My sisters had already written me off, as it was too painful to watch the daily deterioration of my health. As if the years watching their little sister fight through depression, anxiety and an eating disorder hadn’t already strained our relationship, witnessing this prolonged death march proved to be a breaking point. On more than one occasion one or the other would tell me she wished I’d just die already, because the situation, as it was, was tearing the family apart.

Throughout everything, I had never shied away from my mental and emotional struggles; our community was a small one and hiding any medical condition was simply not possible. So I embraced it, offered to talk about my experiences to help educate others, and always took full ownership of my illnesses. There was never shame or denial of the depression, anxiety, anorexia, or OCD. Perhaps it was because I was so young that people were understanding. I mean, who could blame a ten, eleven, twelve-year-old for such problems?

So it was that much more frustrating when, suddenly, I was being accused of lying; of being in denial of a problem I’d fully embraced and tackled in full view. I remember one of my final days in the gym being ignored by one of my coaches. He wouldn’t even look at me. When I approached him, he snapped “Come back and talk to me when you’ve gained five pounds!” and walked away.

That hurt so much. And was rich, considering the other girls all had daily weigh-ins to ensure their weight remained artificially low. To their credit, my coaches (up to that point) had been nothing but supportive. They were well aware of my eating disordered days and never discussed diet, body composition, or weight with me. Another girl in the gym was falling into bulimia at the same time my intestinal issues were too severe to mask, but when vomit was found around the toilet it was pinned on me. Even though I’d never been bulimic.

Anorexia and bulimia are two entirely different disorders.

Yet everyone, save for my dietician, my grandmother, and my mother, had decided I was causing this; that I had relapsed back into anorexia and for whatever reason refused to admit it this time around.

After two years of clinging to life, an opportunity for relocation presented itself; My mother was offered a move to Calgary, and she took it. Given the lack of medical help available to me in Ontario, I opted to move with her, knowing the alternative was nothing short of death.

I faced many of the same barriers when first seeking treatment in Calgary. I’d yet to find a family doctor, and the only medical information at hand was the inaccurate report from Dr. K. My mother implored me to enter into the Calgary eating disorders program. At the very least, she thought, I’d get access to a doctor who could then address what was really going on.

So I went.

I went for assessments, meetings, an orientation, etc., but I refused to play their games. I was told the only way they’d look into my intestinal issues is if I agreed to an intensive in-patient stay, complete with daily therapy for a problem I no longer had.

I wouldn’t do it.

The final meeting with the team at the eating disorders treatment centre included my mother, and I was offered the chance to ‘prove’ my non-anorexic status by eating a chocolate bar. I laughed at the Kit-Kat so smugly being passed my way, and told the lead therapist, in no uncertain terms, to go fuck herself.

That was a long drive home. My mother went to bed, disgusted with me, with the medical system, with the whole experience.

I spent the night sobbing, trying to decide the least painful way to end my life by morning.

It was shortly after that incident that I connected with the man who would take my case, who’d become my family doctor and advocate, and ultimately, who’d save my life.

Let’s call him Dr. J.

Dr. J was the first medical professional to take me at my word with regards to the past mental health issues being, indeed, in the past. Time would tell, he argued, whether or not I was being truthful.

He quickly realized, I was.

Dr. J made it his mission to solve the medical puzzle at hand. It wasn’t all smooth sailing, however, and there were a few more instances of being written off as “the anorexic in denial” without so much as a basic examination.

But thanks to his unwavering commitment to my case and a keen interest in a good medical mystery, Dr. J built a team of specialists and surgeons who dealt with me as if I’d never had a history of anorexia; who evaluated and treated me as they would any other patient who presented with these symptoms, but who didn’t have that scarlet letter stamped on their medical chart.

Due to the lack of proper diagnosis/treatment for such an extended time, the damage to the intestine was extensive. Recovery would not only be a long one, but it was unclear as to what extent recovery could occur.

I had a segment of my large intestine removed (only one segment because it wasn’t clear I’d be able to survive a more extensive surgery) and an intestinal prolapse repaired. What remained of the large intestine was left intact, but disconnected from the small intestine at the ileocecal valve.

For the first time since 2002, I was entirely free of pain.

I was 58 pounds at that point, and it was determined my small intestine had lost the ability to function. I devoured obscene amounts of food to no avail. I could – and did – eat anything and everything, but my gut simply could not digest or absorb nutrients.

An intensive intestinal rehabilitation program was proposed as a last-ditch effort to restore the small gut’s function before I’d be resigned to a life on TPN, and, in the end, it proved successful. 18 months of round-the-clock, high-volume, high-caloric intake, in addition to a steady stream of complete meal replacement drinks, allowed the lining of the small intestine to regenerate and the gut to regain function — though at a less-than-normal capacity.

Next step was tackling the endocrine deficiencies and dealing with the fallout from the period of chronic malnutrition.

My mother remortgaged the house and I took out a $30,000 medical loan, allowing for all medications required as well as one treatment not covered by medicare (long story).

So, after two years of fighting the stigma assigned to me based on a battle from childhood to find a doctor who’d look beyond, followed by proper investigations and diagnoses, two intestinal surgeries and six years of intestinal and endocrinological treatments, I find myself where I am today.

That, being the final stretch of the treatment plan, preparing for one final surgery and planning for life after the completion of treatment.

I can only imagine where I’d be right now had I received prompt medical attention; had the ulcerative colitis not been allowed to get to the point of severity it did. It’s somewhat comforting to know the medical professionals I’ve dealt are now using my case to teach new doctors how not to handle people with a history of mental illness.

It’s nice to think that, in the future, someone will be spared the barriers to treatment that nearly cost me my life.

At least, I hope they will.