Problems with Health Care Providers

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This isn't related to autism treatment exactly, but just to seeing doctors, psychiatrists, etc., in general. Do others find they've had problems with them in the past?

What I have found is that I find someone who is really good and works well with me...or there are some issues, that range from mild to needing to get another doctor, and often they progress over time.

I tend to be pretty strong-minded and independent, but also want to give them the benefit of the doubt for their professional status. So when they don't address my issues effectively I really have problems with them and feel let down. I'll find out they weren't giving me the best advice or treatment and often it's only through my suffering that I come to realize this. I think it's just others' incompetency that rubs me the wrong way...

One example was a psychiatrist who prescribed me a bunch of meds and then randomly decided to take me off of them without tapering down (particular the benzodiazepines which had really unpleasant side effects like no sleep for a few days). This had the added unfortunate effect of leading me to not trust him and not want to trust other psychiatrists and to come off my antipsychotic meds...and I ended up with another psychotic break within months.

Another psychiatrist didn't tell me about how the meds I was on lowered my seizure threshold, and then I had seizures when I drank too much alcohol. Then later on another psychiatric nurse practitioner totally dismissed my shy bladder syndrome as a real anxiety problem, saying it sounded "a bit inconvenient" but wouldn't acknowledge it as a disorder. Try telling that to someone who literally can't travel on an airplane or use an airport (without a catheter which at that time I hadn't even learned to use). He was also really stubborn about changing my meds to any degree without knowing much about me. It's a medical condition, buddy...and this is your profession, I mean c'mon! The next psychiatrist I saw had no problem seeing it for what it was and was happy to go through some med options with me.

Most recently (and still ongoing for a month now) is my current doctor who doesn't seem to know how to treat my UTI, that I got from an intermittent catheter. I read some online articles about UTIs that don't show up on urine culture analysis tests, and it's widely discussed that these tests are not accurate. I've also read that UTIs in males should be treated as complicated by default, and given a longer course of antibiotics. He has been really resistant to seeing the possibility for UTI given a negative culture, and hasn't even considered the possibility there's still an infection there despite my symptoms being pretty obvious. The story is an infection was detected through culture, was treated with antibiotics, but I still have a bunch of symptoms. My guess is that the infection was complicated and some of the bacteria was detected and taken care of and some was not. I can tell he's doing his best but he seems ignorant about the tests and didn't even suggest what I learned through cursory analysis of articles online about the ineffectiveness of the bacteria culture test (missing 20% of UTIs). I also had a hard time getting him to understand that my BMI is going to be higher than others' because I lift weights and am mostly muscle. Yeah there was extra fat there and that's fine, but it's like 20lbs extra of fat...he acted like I don't even work out at all and weigh 265 pounds due entirely from fat and should be treated like a very overweight person.

Surely I'm not alone in finding doctors can be incompetent, stubborn, rude, dismissive...of course they can also be many other really great things, but I'm just disappointed in some of them that they can't be held to higher standards...some of them seem really superior and insensitive with me and I'm getting sick of it...

I try not to view healthcare providers like benevolent & all-knowing people who are there to help me. (Like in the movies and TV.) No, I view them as people who are just there to do their jobs. Some of them are good at their jobs, some are not. Some are new at their jobs, some are not. And some jobs are just difficult. So I always start by considering who they are and what their jobs are. For example, I had a foot problem, and I saw a podiatrist for it. My podiatrist said she's mainly a foot surgeon, so I knew she was more likely to recommend surgery. I ended up going to a different podiatrist.

I treat every visit to every healthcare provider sort of like a job interview. How can we meet each other's needs and expectations? I start by presenting my problem, give them any details necessary, and ask them to tell me what my options are to treat or resolve my problem. I make sure to gather the pros and cons of each option. I ask them how each treatment works, and what its side effects or drawbacks are. I question them on everything. I am interviewing them for a job. Not in a rude or threatening way, more like a "that's interesting, can you tell me more about that?" sort of way. I just want to make the best choice for my treatment.

I try to imagine the possible results of each option, and whether they would be likely to satisfy my needs and desires. I try to poke holes in their suggestions and tell them right away if I think their suggestions don't meet my goals for treatment. I question why they want to try a certain treatment, and what evidence points them to choosing that treatment. (So I know they're not just picking something random they saw or read about recently, or something they are getting a kickback for.)

I ask if there are any other alternatives I should consider. I don't think of my doctors as being people who are bestowing a gift of treatment upon me. I regard them as people with whom I am negotiating the responsibility of providing the treatment I approve and consent to try. For example, if I give an auto mechanic consent to change my car's tire, they will be hearing about it right away if they either fail to change my tire, or if they do other work that I didn't consent to.

The other thing is I give my healthcare providers constant updates and feedback. I let them know exactly what I did when following their treatment instructions, and I tell them exactly what my experience was, and what my and results were. All the time, every time. If my treatment isn't getting me to where I need to be, I tell them. That means we either need to alter the treatment, or I need to see a different provider. They can't do their jobs if they don't know how the treatment is going.

This is often difficult. Sometimes I have to make a list of my concerns and questions, and make sure to bring the list with me to the appointment. Sometimes I have to keep a journal of my results. Sometimes I have to bring someone to the appointment with me, who will ask questions on my behalf, to advocate for my treatment. If you are a minority, you might want to try this.

Sometimes I get a bad one and need to switch to a different provider. And I'll be honest, and I'll say "my goals for treatment were XYZ, and I don't think we're making the progress I want to see." I just don't have the time or money to be let down by doctors more than once. If it's not working, I move on whenever possible.

If you are having trouble with UTI treatment, and if you are in the USA, you could also visit a Planned Parenthood for treatment. They treat UTIs and they treat both men and women.