The Martlet

I couldn’t believe it had taken more than a year to reach such a simple conclusion.

My illness, known to the medical community as a type of anaemia — Vitamin B12 deficiency — has an elusive list of symptoms. And I have only recently settled into a routine that lets me function like a human being. But one little vitamin, that can be found in any health-food store, caused me years of strife. There are two reasons for this: the first is my own journey to understand this affliction. The second is that I was misdiagnosed.

Diagnosis pressure

With the sheer number of diseases and deficiencies (and the often similarity between symptoms), it’s impossible to accurately measure how many people are misdiagnosed per year.

According to Canadian Medical Association President Brian Day five million Canadians do not have access to a family doctor. Day said in 2008 that Canada now ranks 26th out of 28 countries in doctors per population.

“Adding to the pressure,” he said, “is the fact that 4,000 doctors are about to retire.”

As a result anything minor enough to be treated at home is grounds for a short talk and a “call me in the morning” smile before you’re ushered out of the office — often with very little actual information passed between the patient and the doctor.

In 2005, my mother ended up in hospital because her doctor assumed that her abdominal pain was stomach-based. It turned out to be kidney stones. I called the ambulance at five o’clock in the morning from my mother’s bedside phone while she groaned and clutched my hand until her knuckles were white.

That experience was a warning for what was to come.

How it started

In early 2007, I was in my last year of high school. I had elected to undertake the rigorous International Baccalaureate program and found it to be far more taxing than I expected. I was under a lot of self-imposed pressure to do well in the program with unrealistic expectations of myself that simply couldn’t be met.

The constant anxiety began to take a toll on my health. I couldn’t sleep well, I couldn’t keep my dinner down long enough to absorb any nutrients, and I was experiencing increasingly-severe abdominal pain. The doctor I was seeing at the time informed me that these symptoms were the result of the self-induced stress. I told myself that if I could just push through to graduation that I would be free of the stress and ensuing health problems. I graduated alongside my friends in June 2007 and watched with anticipation as the summer rolled out before me.

The stress left me. The health problems didn’t.

A growing problem

My doctor never requested blood or urine tests for me, even after I left high school. By this time my mother had suspicions that my deteriorating health was due to more than just stress.

We performed small experiments in attempts to self-diagnose and discovered that I was lactose intolerant. I cut dairy out of my diet for a week and felt better. My parents started bringing home lactose-free milk. They did everything they could to help in the absence of a proper diagnosis — but it was hard to be grateful when I hurt so much.

Between my father and my girlfriend’s support the transition to university life came smoothly. They helped me through the move and in establishing myself. With a new home, new school and new opportunities, I was prepared to start over. There was only one problem — I couldn’t stay awake.

I dragged myself from bed to class and back again with no energy and was sleeping 12 to 16 hours a day. Attributing the fatigue to increasing abdominal pain brought on by bad cafeteria food, I fought to stay on top of my schoolwork. Studies fell by the wayside and I began to wonder if I lacked the academic discipline to continue. In October of my first term I sought professional therapy.

My therapist successfully helped me to view my emotions objectively. Unburdening myself to him brought me incredible relief; however, I did not think to ask him about my physical problems. This type of healing was for my mind — and I assumed my body would follow.

By November I was sick enough that it was visible to those around me. I still slept profusely and abdominal pains struck after every meal. Having cited stress as the cause in the past, I began to fear for my life. I distrusted doctors, predicting they would only attribute it to stress again. I couldn’t eat without getting violently ill and I feared that I would end up in hospital. I can’t remember much of my first university term. My illness consumes that time in a haze of darkness and pain.

If you’re healthy, thank a nurse

Finally, sometime in December of 2007, I spent the weekend with my girlfriend’s family. I arrived after a long bus ride and collapsed on the couch to doze for an hour. When I woke up Wendy was leaning over the back of the couch, watching me.

“You’re sick, kid,” she said.

I poured out the whole story. She listened with all the sympathy of a mother, but also with the critical ear of a nurse. Wendy is a phlebotomist. She takes blood for a living. Her experience as a nurse is what saved me.

“It sounds like some kind of anaemia,” she said. “Probably an iron deficiency.”

She told me to go back to my doctor and request a certain form that would allow her to legally take my blood. She said not to take no for an answer. Bolstered by her support, I went to my therapist and demanded to see one of his associates in practical medicine. I was fed-up and determined not to have my affliction dismissed as stress again.

It was incredible how quickly things progressed after the shift in attitude. My therapist listened patiently and got me a consultation that same day. I received the required form took it to Wendy and had her draw my blood. She sent it off with a specific request that the results be returned to her directly. I didn’t even have to visit the lab.

Waiting for the results is a state of nervous agony. What if it was something terrible? I have a wicked fear of cancer and other terminal things and (as irrational as it seemed) my fatigue left me with the terror that I would one day fall asleep and never wake again. Every minor bad feeling could mean a relapse and more hours lost to pain.

Before long we got the results. Once we knew what it was, I went back to the doctor and was advised to get some pills from the drug store. If I took 500 mg of B12 once a day with food, it should start repairing my body’s depleted stock. I bought the biggest bottle of pills I could find and tried not to collapse with relief. My hope for a normal life returned.

Looking ahead

Now that I am on the road to recovery, I feel both thankful and frustrated. I know my body’s warning signs very well, having spent a lot of time training myself to listen to them. But my former doctor dismissed my symptoms even though I knew it was something more than stress.

I worry for those with more serious complications. Self-diagnosis is becoming more prominent due to the wealth of information on the Internet, yet doctors repeatedly claim that there is no substitute for a proper consultation with a physician. In truth there isn’t, but, considering the difficulty of getting a proper consultation, it should come as no surprise when patients attempt to do it themselves.

“Really, it’s about empowering the patient,” says Sara Wegwitz, a registered Outreach nurse with the Jack Petersen Health Services at UVic. “Patients are the experts on their bodies and we’re the experts on biology. We encourage patients to record their symptoms so that the health care professional can then help them navigate through to diagnosis.”

But Wegwitz and I are in agreement: the problem is larger than individual clinics can handle. What is needed is a cultural shift.

“It’s interesting that we put funding toward health care and we’re still getting sicker,” Wegwitz says. “I’ve read that only one percent of [Canadian] health care funding goes toward prevention. As a society, it’s like we’ve given up the responsibility for our own health.”

Wegwitz reinforces the idea that being healthy is not as difficult as being sick.

“Even a 15-minute walk per day is doable,” she says. “Once you realise how easy it is, you’re already taking small steps on the way to wellness.”

One of those steps is to “be in the driver’s seat,” as Wegwitz says. Do your own thorough research and listen to your body. Learn to understand its signals so that you can document them and bring them forward to give your doctor something to work with. If we all do this, it will speed up the diagnosis process. “But, do not treat yourself,” Wegwitz says. “Doing so is extremely dangerous.”

“There’s a lot of misinformation on the Internet,” Wegwitz says. “It tends to create a lot of unneeded anxiety and tension in the patient; they think they have something serious when they don’t.”

Wegwitz says it’s best to be sure of your sources — Health Services website has a list of approved sites. And consultation with a physician is always best when you’re unsure. You can work with your doctor so that he or she is not beleaguered and you can still get the treatment you need to heal and return to your life.

On the mend

I am mending. I have enough energy to get through a full day and the pain only comes when I’m overtired or I’ve eaten something that doesn’t agree with me. I am so incredibly grateful to my therapist and my new doctors for their patience and prompt action, to my parents for helping and supporting me, my girlfriend for taking care of me while I recover and to Wendy, without whom I would probably still be ill. I am thankful that my illness didn’t turn out to be something worse. Some are not as lucky as I, and I pray that they find a support system to help them through it.

I am 20 years old and I was looking at a future spent indoors, unable to experience everything the world has to offer for fear of being away from the bathroom. I no longer have that fear. I can write, work and do more than just live day-to-day. My life is mine again.