I Feel Discouraged by the Healthcare System
As some of you may know, I’ve been applying for long-term disability for over 3 years now. I’ve applied twice (with another application currently on the way) and been denied twice already. I can’t work and haven’t been able to for the past 3 years. I have little source of income and am completely reliant on my parents for financial support.
Lately, I’ve been feeling extremely down and hopeless with my medical situation. I’m about to turn 25, and in Ontario, that means I will no longer be covered by the government for my healthcare plan. I’m going to be on my own for the first time in my life. I’ve applied for government support for insurance coverage and I’m waiting to hear back from them. If I don’t get it, I don’t really know what I will do.
When I first got diagnosed, I felt extremely grateful for my team of doctors. I felt like they had my best interest in mind and I couldn’t have been happier. Over the years though, my opinion has started to change on them.
My family doctor is still pretty great. She helps me when I need her, especially when it comes to mental health stuff. She helps me find the right drugs for me and always listens to me for what I would like to do. My rheumatologist, on the other hand, has become a different story.
I have asked my rheumatologist twice now to help with my application for disability. The first time, he told me “you won’t get it for AS. You just won’t”. So I went to my family doctor and she was more than happy to help me apply. I didn’t get accepted, and when talking to my AS support group, they all told me I need to apply with my rheumatologist’s help, or else I won’t get it.
That’s when I went to him again. He told me again that I wouldn’t get disability if I applied with AS. He told me to try only applying with depression because I would be more likely to get it then. I took that information back to my family doctor, and she still wanted to apply with AS as well as depression, so that’s what we did. I didn’t get accepted for a second time.
What happened next
This is where I really started to feel discouraged about my rheumatologist. I decided I would ask one more time for his help applying for disability. I would tell him how much I need this if I ever want to move out of my parent’s house and start a life of my own. With COVID-19 going on, I wasn’t able to talk to him in person, so I called his office.
I spoke to the receptionist and told her I needed to speak to my doctor for only a few minutes, and she told me that he was away but she would leave a message and he would get back to them. I didn’t hear anything after a week, so I called again.
When I called, she told me she remembered me calling and that he hadn’t replied to her yet. I thought that was weird because it had been a week and I only needed to talk to him for 5 minutes at the most.
I let another week go by, and that’s when my mom decided to call because I just didn’t want to deal with him anymore. The receptionist put me on a waiting list and told her that I needed an appointment booked if I wanted to speak to him at all (which was not the case in the past). I called the next day and told her I just needed a minute of his time, not a full appointment. She got annoyed with me and told me this is the way it works now, and hung up.
How I feel
I’ve been extremely frustrated with my rheumatologist and his office. It feels like my life and well-being doesn’t exactly matter to him, even enough to try applying for disability. I’m not sure where to go from here, but I’m sure I’ll be posting an update in the near future.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?