In December of 1996, when I was 37 years old, I started getting debilitating headaches. Gradually, I began losing my peripheral vision. My family doctor, whom I had been with since the late 1980s, sent me to specialists, but it took a while to figure out exactly what was going on.
Roughly 14 months after the headaches started, I had a CT scan that showed a mass in my forehead. Around the same time, my family doctor noticed I had the symptoms of Cushing’s disease, which is when your body produces too much cortisol because of a pituitary tumour. She explained that the disease was the result of a benign brain tumour—the cause of my headaches. Read more: Dispatches from Ontario’s broken health care system
Finding the right neurosurgeon to take on my case was complicated, but my family doctor was very supportive. The procedure, which took place in 1998, was a success. I ended up needing three more brain surgeries between 1999 and 2008 to remove more tumours. In 2015, I had an adrenalectomy to remove my adrenal glands, the organs that produce cortisol, the tumours’ food. Since the adrenalectomy, I no longer have Cushing’s disease, but I now have Addison’s disease, which is caused by inadequate cortisol. The steroid medication I take to treat it has led to severe osteoporosis. All of which is to say I have complex medical needs.
Last summer, I got bad news: my doctor was retiring, and the clinic where she worked was closing. I was devastated. She had guided me through the health care system for more than 30 years. The clinic referred patients to a doctor who was going to charge $5,000 per year to be rostered with him. I was living on $1,100 a month in disability payments at the time, so there was no way I could afford that.
I started looking for a new family doctor right away. I found one after about eight months, but we aren’t a good fit. She’s been dismissive of some of my concerns, and her clinic sends out newsletters advertising Botox injections, which makes me think they are more concerned with profit than quality of care. In the past, you could try out a doctor, and if the match was wrong you could find a different one. Now you are lucky to get anyone at all. I know having a family doctor I’m not happy with is better than not having one—especially because I need a physician to fill my prescriptions—but I plan to keep looking. I’m on wait lists all over the city. Two clinics have told me they won’t take me because they have a limited capacity for complex patients.
Navigating the health care system without a guide I trust is very hard. But I won’t let my health issues stop me from advocating for the kind of care we all deserve.
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