How I Got Involved: so I won’t have to start over…again

By Sophie Heizer

When you have an invisible illness and already feel like shit, it’s difficult to convince other people of it. You need access to your health records and knowledge about how to talk about your illness to get the treatment you need. These resources, particularly because I moved countries twice, would have helped me reach a diagnosis earlier.

What’s wrong with me?

Any time someone asks what’s wrong with me, I jokingly ask if they’d like to see the spreadsheet. The truth is, we don’t exactly know what’s wrong with me yet. I don’t have access to the information that would be in that spreadsheet – yet.

What I do know is that I was diagnosed with Anorexia Nervosa in 2013. I have recovered and relapsed and recovered numerous times since then. Two members of my immediate family were diagnosed with anxiety disorders about three years ago. I regularly have anxiety attacks and, less frequently, panic attacks. I started experiencing crippling digestive issues in 2015 when I moved to Australia to study.

I was finally diagnosed with Generalized Anxiety Disorder (GAD) in 2020. My current doctor also suspects I have a stomach ulcer brought on by stress.

Barriers to health

I made reaching this diagnosis more difficult in a number of ways. I moved to Australia in 2015, and then back to Canada in 2019. I can’t always afford to do right by my health. I wasn’t aware that not everyone feels this constant, crushing anxiety. I was apprehensive, to say the least, of therapy and mindfulness. I still don’t know how to communicate all the ways in which I feel like shit. I don’t have all the answers.

In Australia, you can see an over-worked walk-in clinic doctor, or pay out-of-pocket to see a family doctor. In Canada, we wait longer than the international average to see doctors, to see specialists, and for emergency department visits. Therapy is expensive everywhere. Seeing doctors who rush you through a one-minute consult is disheartening.

Each time I moved or switched doctors or therapists, I had to start over. I had to try to explain to more doctors, therapists, and psychologists why I feel unwell and recount the traumatic events that might have caused it. Doing this drains you of a huge amount of energy and it’s viscerally unpleasant.

A personal health record could help in these situations. It means you have supporting information at your fingertips – you could literally just hand over your spreadsheet. Imagine how much time, money, and angst you’d save.

Catch up, Canada

Australia has a national personal health record system called My Health Record. Its rollout has been the subject of intense criticism, particularly for the switch to an opt-out model. I opted out by the deadline because of the various issues and returned to Canada in 2019 with no health records for the four and a half years I lived in Melbourne.

Canada still doesn’t have a national personal health record system. We’re behind many other countries on this front. We take pride in our world-class health care system, but it’s stuck in the 1990s – fax machines are still industry standard.

The co-op model for personal health records appeals to me because it removes some of these barriers. I need this service to not break the bank, be accessible on my phone, and come with me if I decide to move again. I want to control who has access to my information. I want this service to make my life better and easier so I can focus on helping other people.