Navigating the health care system

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Hello all,

I'm looking for advice on how to stay sane while navigating the health care system.

Over the last six months I have been working with about 5-6 different professionals regarding a chronic health disorder and general life issues that come with being Autistic. Although I appreciate having so many people helping me with my issues I do still find it very overwhelming.

Today, I broke down in tears because my doctor did not notify me about some important tests that had to happen in order for me to receive medical treatment this week. Now I will have to wait for what would have a simple routine procedure because of someone's incompetence.

It feels like my full time job these days is following up with the doctors and different organizations that I work with to make sure they actually do what they say they are going to do.

I'm interested in hearing what everyone has to say about this topic.

CFL

I hear you. I already made a post about this before as well. It's hard to stay sane, I have to be honest, and it feels like total darkness sometimes. Especially if you don't have a lot of social support outside as well, as it is in my case.

When I am provoked, I lose patience and experience frustration where I become more direct, demanding and also questioning, as a last step I contact those who decide, managers or others who can influence from above so there is an external influence not only from me but others who can join in and push until they have to give in. Or at least do their job right. I don't know how it is in your country, but where I live, you can organize meetings where everyone is joined at the same time from different care units, ie in more complex cases and everyone gets to speak and have a clear goal. I have yet to test this but I know it exists and is used.

The only way to stay sane in this is to constantly repeat that you have rights to a dignified life with care just like everyone else, they are no more worthy than you and behind everything maybe something really bright awaits and it is worth the wait and the trouble to see what it is. But I sure know how this feels and it feels like a full time job for sure, becuase it is!

In my experience (UK and USA), if it's a matter of life and death they're quite good, but their performance is mixed if it's anything less serious than that. So for that kind of thing I use the old adage "if you want a job doing right, do it yourself" - or at least shadow their performance and do your own research as if they're going to drop the ball. It's hard work of course, like it always is when I don't simply trust authorities and passively leave it all to them, but they've made enough mistakes to make it important for me to take my life into my own hands to some extent. They're human, they make mistakes.

From my own experiences with the American healthcare system I can only say is good luck. The system is rigged, and not for our health or best interests. The modern healthcare system controlled by the insurance industry and thus is designed to maximize profits, not health. Chronically ill people are repeat customers and thus profitable; curing ill people is not.

There are ways to get around this problem, but that route typically requires access to enough finances to pay for your medical costs yourself in order to get out from under insurance company rules and limitations. I would also suggest working on building your own personal knowledge about your health issues, their possible origins, and what can be done to hopefully cure whatever you. There are often more than one cause, and thus more than one way to potentially cure yourself.

This is an amazing video that relates to this i think.

Key fact, Canadian Freedom Lover will be interacting with the Canadian healthcare system, which despite it's shortcomings is nowhere near the dumpster fire our American neighbours have to deal with.

At least so long as we don't vote in a guy who's running on dismantling our public healthcare system.