Fed up: Food, fads and facts

After a long break from writing, I’m finally taking the time to go back to my favourite sport of coffee shop hopping. I have been focusing on myself and my career and my health, and now that things have settled I have the opportunity to return to my overly caffeinated weekends and enjoy some lovely me time with a cookie and a book in a strange place.

 

Walking through the Toronto Public Library, I came across a title: The Autoimmune Solution. I pulled it off the shelf and flipped through the grainy pages of a book that had so obviously travelled from kitchen to kitchen. The stale smell of spilt food lingered on its pages as I looked at the pictures of a meal that impossibly claims to cure you of all symptoms. The neighbouring books listed endless diets of how to eat and why to eat it – and I began to reflect on this unusual massive marketing scam.

Dieting has of course been an absolutely essential point of my career and illness. It’s undeniable that certain foods make you feel a certain way. But these books claim that every person consistently has the same reaction to all foods. For a long time I was a victim of these schemes, in fact, I had probably tried every single diet listed in that library until I realized that this is not how the body works. Especially a body that’s differently abled than the rest of the community. How could I be assured that a paleo diet will all of a sudden improve my illness? If my illness requires a tailored set of medication, should my diet not be tailored as well?

The most challenging part of this is the negativity that I receive from people. Everybody wants to label your diet: “Are you paleo? Are you vegan? You can’t say your plant-based if you’re willing to eat that.” And my all-time favourite: “Are you celiac? Will anything actually happen if you eat gluten? Or are you just one of those hipsters trying out a fad diet.” The criticism is endless. It has even gotten to the point that I avoid eating with people that don’t know me well for the fear that I’ll be judged on how I choose to eat.

Unfortunately, this fear is not unfounded as I’m sure many others with dietary restrictions have experienced. I’ve faced criticisms from vegetarians arguing that I’m not ‘a real vegetarian’, meat eaters saying that it’s a stupid choice not to eat meat, I’ve dealt with coworkers criticizing my food portions, friends criticizing my weight and strangers telling me to go eat something because I’m too skinny. All this and caring too much has led to food anxieties of all kinds.

I eat the foods that make me feel good regardless of whether it fits or doesn’t fit in the web of popular diets. And quite frankly what I choose to put in my body is a choice that shouldn’t be criticized or praised by anyone other than myself.

Ironically enough, I’m sitting in a little coffee shop having an almond milk latte beside a couple where boy is criticizing his partner for having a coffee with cream: “You’re not supposed to have cream” he said, to which she replied: “I’ll do what I want and I want”– you go, girl.

It seems like a simple statement – eat the foods that make you feel good, but it took me years to get to a point where I was aware enough that I could follow an untitled and individual diet. I had to clean my diet up from most food and gradually reintroduce things over the course of a few months to finally feel a difference. I’ve learned that I can consume gluten in small quantities, I should avoid dairy like the plague, rice should be consumed only on occasions and fruits are my best friend – except oranges…yuck. Though as like everything else in my life, my body is not stable. I need to change my diet regularly to keep up with myself, and I’m still learning how to do that. I’m learning that generalized diets like The Autoimmune Solution may have helped certain individuals, but it’s unfair to say that it will cure your illness because from my experience a lot of these diets can be more harmful than good.

 

A Canary in a Coal Mine

My mind wakes up with the sun. The beams of sunlight capture the dust in the air and my eyes melt the room into an oil painting as I inhale the fresh air of a new day. I begin to move my toes and fingers, stretching up to my knees and elbows to see how limited I am in movement this morning. I often feel my hips too stiff to move right away so I try to introduce small movements at a time as I try to bring my feet to the floor. I slowly stand and feel the pain escalate from my hips to my knees as I slowly make my way to the bathroom to sit in the burning hot water of my shower. I’ve found this to be the easiest way to wake my body. I can’t explain the science behind the healing effects of water – or perhaps it is just my version of a sugar pill. But, soon after, I can stand up and start to feel my joint awaken and become more limber with movement. Most pain will vanish within an hour, some will linger for weeks, but it’s completely unknown what will be the severity of my symptoms that day.

The issue with having an invisible illness is that while I am all too aware of the severity of my symptoms, there is no physical representation of my pain. When a person breaks there arm or slices their finger on a piece of paper, there is physical evidence of their suffering: we can understand what they are experiencing and offer support and sympathy. But with an invisible illness, we cannot display the severity of our pain except through verbal expression and to someone who has never had a similar experience, claiming that: ‘I’m being electicuted through my body’ is enough to suggest a psychological workup. There is no glaringly obvious physical problem, it is a continuous uphill battle to be heard, and sometimes, even receive proper treatment.

In my second year of university, I began to experience tingling in my fingers and toes. I dismissed it, after all, it was likely just an extended symptom of waking up. The symptoms grew more severe, my body would tense up at every slight movement, I became increasingly dizzy and I felt as if my body was continuously being electrocuted. I was taken to the hospital for emergency examination, and twenty-two hours later, I was sent home with the diagnosis of a migraine. I have experienced migraines in the past, and while I could not recognize this pain as similar, I figured I’d take pain medication and lie down in a dark room, and it would pass.

I returned to the hospital a couple weeks later. I explained that I had been unable to attend school, I couldn’t move without pain, the feeling of electrocution had become so severe that I had resorted to crawling to the bathroom and back to my bed. But, again the doctors dismissed me with a migraine and prescribed me a dose of morphine to aid the pain.

It shocks me how dismissive the doctors were acting and how quickly I could have become addicted to painkillers. I received no tests or procedure to try to diagnose my symptoms, instead, I was continuously told that the symptoms I was experiencing were not consistent with anything they recognized, therefore were impossible and they continuously sent me home.

At this point I was practically living with friends as I required around the clock care: I needed help feeding myself, bathing, and even getting to the bathroom. I was no longer attending classes and failing the majority as I could not obtain enough doctors notes excusing me from class. As time went on, my friends could only visit on rare occasions as they had other obligations and my mental health was quickly deteriorating. I wanted to enjoy the sunshine, I wanted to read my books and attend my courses and enjoy time with my friends but I was retrained in an anatomical prison.

After two months, my symptoms had become so severe that I was practically paralyzed in my bed. My sheets were unwashed, my hair had been permanently placed in a bun on the top of my head and my skin had become so dry and brittle that moving my fingers would be excruciating. I would call my mother crying, trying to comfort myself while trying not worry her too much (because apparently it was just a migraine). But, my voice must have revealed the extent of my suffering because I woke up the next morning to my mother, who had driven the five hours over night, to provide me with emergency care. She helped me to the car, and lay me down on the seat where I immediately burst into tears. I cried most of the way home.

She immediately brought me to our local hospital. As I was in such a terrible state I was unable to advocate for myself, she raged at the doctors and ensured I would not be leaving without a proper diagnosis. They admitted me to the urgent care unit and introduced me to various specialist. I was quickly directed to an MRI where they discovered that I had myelitis. The doctors explained to us that my spinal cord was severely inflamed in my upper spine and neck and that I would require immediate medical intervention. I was place on three days of I.V. Cortisone to reduce the immediate inflammation followed by six month of a high oral dose. I was then continuously followed up by a neurologist as my lupus had begun to affect my neurological system.

I was able to return to school within a week and by some miracle recovered my grades in four of my five courses. Things were ‘normal’ again, I would enjoy time with friends and spend days at the library and was finally able to walk. It’s shocking how many mundane tasks I had not appreciated until my ability to perform them vanished. Simple things like showering feels like the most soothing luxury to me now.

I still experience quite a few neurological symptoms of Lupus, I’ve struggled with sudden vision loss and sudden hearing loss neither of which have been treated to this day. I am continuously receiving the excuse that I am aging and that vision and hearing loss are a typical result of that. Perhaps this is how it feels have passed the age of 20. But, I continue to advocate for myself and I continue to rely on the support of those closest to me to help me through tough phases. I can’t imagine how difficult it must have been for those around me to advocate for nothing but my personal testimony but it very well may have been a blind faith that saved my life.

Photographed by Tavo Arana Photography

On Being Ill: The Art of Misdiagnosis

I was first diagnosed with Systemic Lupus Erythematosus (SLE) at the age of twelve. My mother sat next to me in the doctor’s office when we finally received the diagnosis. It was as if I had been drowning for years and my lungs had forgotten how much they loved the taste of air: I could finally breathe.

SLE is a disease that causes the body’s immune system to mistakenly attack healthy tissue. Symptoms can be so diverse that the disease is incredibly challenging to diagnose. While I can never be certain which symptoms related to my illness, I suffered from gastrointestinal issues, joint pains, unusual rashes, and neurological issues my entire childhood. I had seen more specialists than most people will see in their lifetime and underwent a variety of different procedures whereby most were inconclusive. I only had my symptoms which were oftentimes invisible to those around me.

And then, I was referred to a psychiatrist to evaluate my mental state: ‘she has pediatric depression’, they told my parents and claimed that I was creating injuries for attention but there was absolutely nothing physically wrong. A second psychiatrist stated I was psychosomatic, whereby a mental factor such as anxiety or depression causes a physical illness.

I was too naïve to be depressed and had never really concerned myself with any business that caused any kind of harm but I would convince myself that maybe I was ill. I didn’t want to simply reject the diagnosis of the psychiatrists, so I began to think that maybe I was so mentally ill, that I myself couldn’t even recognize it. It didn’t feel true, but the truth is often counterintuitive and so I had to believe that he was right.

As years passed by, my symptoms only increased in severity. By my eleventh year, I had already been receiving treatment for a stomach ulcer; I had to avidly avoid the sun as I would break into painful rashes all over my skin; my fingers and hands had swollen to triple their size at the joints, and my right elbow had locked and permanently folded. I would be dreading gym class as I would be pushed and tested on the level of pain I could only attempt to tolerate.

I can only continue to be thankful for my parents and the doctors who persisted in achieving my final diagnosis. It wasn’t until a blood test performed by my GI, had returned with a positive ANA that I was reassigned to a rheumatologist who had seen my symptoms before in other patients.

And for the first time, I wasn’t crazy.

Within a few days, I began to receive treatments to maintain my illness. My elbow was treated for rheumatoid arthritis with cortisol injections in my joint and my other symptoms began to vanish with the help of steroid creams and prednisone.

It’s striking to me now how difficult it was to be taken seriously, but in fact, 45% of patients who are eventually diagnosed with a recognized autoimmune disease are originally diagnosed with a psychological disorder. (Brea, 2017) Through the years, I have had doctors dismiss my disease claiming that SLE is a term that states: ‘we don’t know what you have’. I have had people claim that I am constantly seeking attention by claiming symptoms of this invisible illness.

I have been dismissed so often, that I no longer discuss my disease.

With this blog, I’m going to create a community to learn about invisible illness and how it can affect so many people on a day to day basis or else I want to reach out to those who suffer in silence for reasons such as this. While some posts will focus on being ill, I also look forward to sharing my modelling career and some of the incredible artists I have had the opportunity to work with.

Thank you so much for taking interest in my story!

Photographed by Tavo Arana Photography

References:

Brea, J. (Director & Producer). (2017) Unrest [Documentary]