How to get along with medical doctors?

Post Reply New Topic

I've never tried singing "Figaro" at a doctor yet , but since I became seriously ill in 1998 I've opened up as much as possible to medical professionals about my SPD and HFA issues. After all they're required to maintain confidentiality. As I mentioned above, it helps them build my care plan around making my visits less stressful for me, and hopefully less time consuming for them.

I have only just recently started telling my doctors that I have ASD. As I have collected more doctors over the years for my health problems, I have begun to notice just how much trouble I have communicating with doctors (especially since my health problems are beyond or on the edge of modern medicine...). I have found this to be particularly critical with my specialists because you don't get to see them for very long. Sometimes it is helpful. The first appointment with my rheumatologist was a little rough, but after that first one, she seems to have really come to "get me!" (maybe she did some homework on ASD...) My orthopedic surgeon on the other hand...I am completely unimpressed with him. He seems to understand that I have anxiety, but he mostly just brushes my concerns aside. He's a bit arrogant too. I saw 5 opthamologists before I settled on the 6th one, a pediatric opthamologist....best decision I ever made!! ! I had a condition that would result in blindness without treatment so I couldn't go without, but the other opthamologists were unwilling to consider just how sensitive I was to my allergens and would not get my medications compounded to be allergen free. The last one was willing to try it even though she didn't believe me. It worked. I was right, and I was able to get off meds for my eye completely! All that to say....Doctors REALLY need a little more training in WHAT ASD actually is!! !! !!

To simply put it, I hate doctors, just utterly hate them. Bane of my existence. I find they ignore almost every word I say and dismiss every concern I raise regardless if I approach them from a polite, helpless, assertive, or angry attitude or whether or not they know me from a hole in the ground. This has led to an unbelievable amount of years of my life lost spent suffering from health conditions that had they not been ignored, could have been treated long ago. I have found that doctor's have an incredible ability to ignore patients that exceed the average patient's ability to articulate themselves (probably even more so with with aspies), and the best way to bypass their ignoring abilities are to type out every concern in concise, well organized writing with Microsoft Word and hand it to them and ask them to read it.

Mind you, even if you keep it to 2 pages(which I like to), neatly typed, organized with headings and sub headings, as well as bold font for important points, they will often be too lazy to even read them properly on the first try. Quoting one doctor's excuse "it's long", which makes me wonder how they ever made it through med school if they can't read 2 neatly typed pages. I find if both pages are nearly equal in length I can judge if they actually read it by comparing the length of time they took to read the first page and the length of time they took to read the second page. I often have to ask them "did you actually read it?". Eventually after you get them to read what you wrote, I usually find they listen much more than had I just tried to convey my concerns verbally.

Doing this also allows them to keep a record of everything that is going on, and it stops them from being able to make excuses and claim that "you didn't tell them" one thing or another because it is clearly in writing. I can also keep track of how many times I have raised a specific issue and how many times they have dismissed or ignored me. I store a copy on my dropbox which I organize by date so that I can easily access any past appointment on my smartphone. Of course this doesn't log what their response is and you will still have to deal with liars who try and claim "oh well I never said that".

As for making the doctor aware of my ASD, I have yet to get my formal diagnosis, which should be ready this coming Monday. However I find making a doctor aware of an ASD diagnosis is unlikely to make an impact as most doctors don't have a clue about autism or what relevancy the diagnosis has to a patient's health or treatment even though they should. I had to explain to a doctor who asked me what the value of a diagnosis is beyond treatment, even though it should have been him explaining that to me, the patient.

I've had some difficulties with doctors, but unfortunately I have no choice to avoid them. I don't know why some people think that you have to be rude or offensive to have difficult interactions with them. I'm always polite, respectful & never get loud but things still tend go sideways for reasons I have trouble figuring out.

The last time, I needed tests so that I wouldn't end up losing disability benefits and end up homeless, but the doctor was fixated on my (non-existent) sex life. I mean, WTF? I had more important things to worry about. (And no, I didn't say that to the doctor.)

I've also found out that they never read notes. So, I just use the notes as a script. It's annoying, though, since my verbal ability is worse than my ability with written language.

As far as deferring to doctors, I can't recommend that as an absolute rule. I'd be homeless now if I had done that with a certain cardiologist (and I had no money for a second opinion). The ultimate truth is that no one is going to care about you as much as yourself, and people can be lazy and otherwise are fallable. So, sometimes you're going to need to push them (carefully, and not such as to impinge on their ego, of course -- I've gotten good at playing dumb).

Thanks for all the perspectives... It's eye-opening to realize this is a problem for so many of us, and it's not just me.

I'm still nervous about my 'consultation' next week... I was prepared to just get a physical, and not expect him to give me more than 5 minutes, but now it feels like I have to pass an interview, just to get the physical! Ahh!

Verbal communication is not my strong point, and I've tried the written approach in the past with terrible results. ("When women come in here with their lists, I know they're just lazy and looking for an excuse not to work.") So... It's going to suck, either way. But I'm determined to be brave, and face my fear, and just get through it as best I can.

If he doesn't like me, whatever. I've spent a lifetime learning to take care of myself through natural healing methods and home remedies, and otherwise surviving on Urgent Care or ER visits if I really need medical attention. I have no problem continuing that strategy for the rest of my life.

And strangely enough, I have no problem getting along with Urgent Care or ER docs, or hospital staff. They tend to like me, because I'm polite, and don't complain. But GPs are hell-bent on hating me, and trying to prove that I'm a giant faker, wasting their time with my imaginary problems. (Is this really a thing other people do, for fun?!)

Anyway, thanks everyone for commiserating, and I'm sorry you've all suffered as well. I'm trying to get into counseling to talk about this issue, and maybe my therapist will be able to help connect me with a good GP, and vouch that I'm not just seeking drugs and attention, and all I want is a freaking Primary Care Physician to give me a yearly physical and keep records of my medical history, like every other human being in this country is supposed to have.

Well, I have changed my mind about trying to see a GP.

I've been anxious about it 24/7 for the past two weeks, and despite my best efforts, I have not been able to figure out a strategy that has more than a 10% chance of success.

And the reason for this, plain and simple, is that 9 out of 10 doctors are arrogant jerks. So it comes down to a 90% chance of being treated like crap, and only a 10% chance that I might get lucky, and find a doctor who will listen to my concerns.

So, I'm going back to my tried-and-true strategy, of only seeking medical help in dire emergencies. I've survived for 15 years on Urgent Care, walk-in clinics, and ER visits, and I will continue to do so. I get along just fine with Urgent Care doctors, because they focus on the immediate problem at hand, and don't waste time arguing over the accuracy of my medical history. If I say I'm allergic to a certain medication, they believe me, without making an issue of it.

I will see a GP when the day comes when I absolutely have to, and it cannot be avoided. But I will not go voluntarily, just to 'face my fear', throw myself to the wolves, and see if I have any better luck than all the other times I've sought medical care, in my 43 years. It's really just a game of roulette, with a 10% success rate, and... why?!

I am blessed that my medical conditions are manageable through natural healing methods, and I don't need prescription medication. If I did, that would be a different story. And that day might come. But it is not now.

If I had better verbal communication skills, I might consider interviewing 10 doctors, and choosing the one who went into medicine with a genuine desire to help people, rather than just to make money and feel important. And maybe one day I will have the energy to do that (perhaps even by sending out written letters explaining my situation, and seeing who responds). But for the moment, it's not on my list of priorities.

It's been a learning experience though, facing this issue, and figuring out how I really feel. I started this thread by saying I had a "fear/hatred/paranoia" of doctors... And thanks to you guys, I've learned to see it for what it truly is: a justified scorn for people who are truly terrible at their jobs, rather than my own irrational paranoia, or something I did wrong. I'm realizing now that it's not me, it's them.

I will be canceling my appointment, and giving thanks for every day I manage to survive without the 'help' of doctors.

You've convinced yourself that one perspective is the whole truth. In fact, 90% of doctors are NOT jerks, but you can certainly make them act that way if you try hard enough.

I hope you're right about being able to treat yourself with natural medicine. If that worked for everyone, Steve Jobs would be here today.

In any case, a toast: To your health.

Ashariel, you apparently see no need for preventive health care. You'll wait until you have a large mass or a heart attack, and then go to an ER.

You aren't obligated to do any differently, but I feel obliged to say you have talked yourself into a position that is not in line with your best interests, medically. I think you have probably yielded to your pre-existing dread and selectively picked opinions that make that dread seem like the real state of the world out there, instead of just the real state of your inner world.

Maybe this is something you can work with a therapist on.

Thank you Bea, that makes absolute sense to me, and I agree with you. I do have severe anxiety issues that I need to work on, and I plan to do exactly that.

I would like to be able to get preventive care. But my reality is a 'lesser of two evils' situation, and at the moment, the risk of having an undiagnosed condition is one I'm willing to take. I am aware of the potential consequences of my choice.

Another thing I would add is that the "arrogant jerk" factor specifically has to do with GPs performing a routine checkup. In truth there's nothing seriously wrong with me, so when I claim to suffer from Lyme Disease and Asperger's (two notoriously questionable diagnoses) – 9 out of 10 doctors regard me with suspicion.

In cases where there actually was something wrong with me – such as when I had a cantaloupe-sized ovarian cyst, and had to get a hysterectomy – the doctors were fantastic, and we got along great.

My mom has experienced this exact same phenomena. After a lifetime of getting along well with her GPs, she developed mysterious aches and pains that were finally diagnosed as Fibromyalgia (another 'questionable' diagnosis that doctors are reluctant to believe). Since then, she has never been able to find a GP who will treat her with any level of respect or compassion. She's the same sweet, kind person she ever was, but the Fibromyalgia diagnosis has changed the way doctors treat her, forever.

I mention this because Asperger's is exactly that kind of diagnosis, which doctors regard with suspicion, and so many of us here are in the position of having ASD-related health problems, but it's challenging to find a doctor who will take our concerns seriously.

Okay. Here's a practical tip, when you feel ready to use it. Ask a Lyme specialist for the names of GPs who are accepting about it. For fibromyalgia, call the Rheumatology department of a large teaching hospital or medical center and ask for a couple names of good GPs for those suffering from fibromyalgia. And so on.

It stacks the cards in your favor.

Be well.

Bea, your tip is not the least bit 'practical', as it would require me to pay full price for doctors outside of my insurance plan. My reality is having to learn to navigate the health care system that is available to me, in my home city, by public transportation, since I have no car, can't drive anyway, and barely have the money for the co-pay and bus fare.

Furthermore, 'Lyme specialists' advocate theories that go against current CDC regulations, and doctors who follow their recommendations risk losing their licenses. No doctor on my insurance plan would ever go along with advice I received from a Lyme Disease specialist – even if there was one near my city, which there is not.

I have not once in this thread complained about my lack of medical care. I accept that my condition is basically untreatable, for people who are low-income and can't afford to see specialists who practice illegal fringe medicine.

I'm going to have to ask you to stop giving 'practical tips' about situations that you know nothing about.

When you're dealing with a doctor, you're still dealing with someone's personality. Credentialed or not, X years of experience or not, doctors will still respond partially based on their personalities, professional non-bias notwithstanding, because they're still people. With all appropriate respect, they are NOT perfect human specimens. They are simply humans who are credentialed in a given area.

I wish I had a good answer for you here. I do get intimidated by some doctors. I also have had the experience where the doctor wanted to be less helpful apparently due to my not just accepting an answer but asking follow-up questions, and had one doctor instruct me to stop consulting Doctor Google, which was pretty insulting, but then again, I don't know if he'd already had 11 patients this morning all of whom were deciding they "knew better"...KWIM? Maybe he was at the end of his rope and I was the straw that broke the camel's back. Maybe he previously took a patient's suggestions too seriously and the patient actually wound up sicker because of it. Maybe he was just a domineering pr*ck. Maybe his wife left him that morning. Maybe he got no sleep the night before. I mean I really don't know and never will and neither can you, or anybody.

Some doctors will react to you, as a person OTS, in certain ways no matter what you do, IMO. You're really not doing anything wrong, as far as I can see and from what you described. You're just being you. I can only say that I try to see behind the coat and realize that no matter the doctor's personality, s/he still is, just like me, only a person, an imperfect person.

I can relate on having no choice of doctors. We do have *some* choice, as far as picking our PCP, out of allowables (we've always been on an HMO, otherwise it's insanely expensive, I mean even the HMO is pricey enough). BUT switching our PCP because we didn't like him/her would mean switching ALL our other doctors as well - one son's neurologist, the other's psych (for ADHD), my endo and on and on. That would be hellacious and what if we ended up not liking the connected doctors in THEIR practice? So please know you're not alone in this.

I actually remember a time (yep, I'm old) when you'd go to your doctor, pay $25 in cash or check and be done with it all; you didn't even have to submit insurance for their records (it wasn't expected that everyone, or even most people, even HAD medical insurance). Or for a "specialist," maybe $40 or $50. You could just literally hand them a check and if you'd hated the appointment, you'd thumb through the Yellow Pages for a new doctor. And then again some doctors would just bill you and you could mail in the check the next month or whatever (yes, really). Insurance has been wonderful in some ways (because by the same token, doing things "the old way" meant that if you were going to require hundreds or thousands of dollars of treatment, that was on you as well), overly restrictive in others. I am glad more people CAN get insurance now in a whole variety of ways but it definitely comes with its downside, IMO.

I'm sorry I couldn't be very helpful, but I hope you know people can relate. Hang in there.