Communication Fail (doctors)

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Ugh.
Does anyone else find it impossible to communicate with doctors?
Yes I have weird health, but today, I was at a new practice for a completely standard reason - I have an earache / tinnitus I've never had before, and my headaches are much worse than usual and I don't like taking ibuprofen. I figure I have an ear infection. Not difficult.
But I get in there almost completely incapable of communicating this. I said "I have a problem with my ear" and then started to try and say it was mildly painful but the ringing was the real problem - but he seemed to talk over me, move around, come at me with one of those light-on-scope things to stick in there, then tell me it was probably just congestion causing altitude pressure and to try a decongestant for a few days and some drops to clear any ear wax - and basically swept me out the door.
I had no time to bring up any of the surrounding issues, and even I know if a patient presents with ringing and pain in ears, unusually severe headaches and hyperacusis, further questions about recent exposure to noise damage or any head injuries should have been asked.
I left without any kind of satisfaction - I'm already reasonably certain this is not wax (which he would have known if he had asked me about my history with ear issues) and I change altitude all the time for work (which he also didn't ask about) and it's never caused tinnitus before.
I already know I'm going to have to go back in three days, as he suggested if not resolved, and try to communicate again that the problem is ongoing.
Why are doctors so hard to communicate with? This isn't serious - just very uncomfortable for someone with misophonia - but those symptoms could have indicated something serious, and he obviously just wanted to get rid of me. Just blow me off with a decongestant to get me out of the office. I fail at communication so obviously, I fail.
I thought of actually writing it all down and just handing it to them next time I have to see a doctor, and not even trying to say a word. I hate speech.
Experiences?

I think that's partly why it's important to be able to see the same doctor most of the time (or at least a doctor who has access to your medical history).

I haven't had that much experience with random doctors, but even when seeing the same doctor, one usually has to work through all the common stuff before you can get to the less common stuff. I'm not really sure how one could get past the first step when seeing a different doctor every time.

When I was at college, I went to the clinic near campus because I was pretty sure I had strep throat. Now, granted my usual symptoms of this are not what most people's are - I start out with an earache, low-grade fever, nausea/vomiting, and my head usually hurts more than my throat. But I told the doctor I saw that I was pretty sure I had strep throat, and she took my temperature, took a quick look at my throat, said it was probably viral, and sent me on my way. Yeah, a few days later, I was back in because my temperature shot up over 103 overnight. Interesting how much more seriously they took me then And I was right all along - they took a culture, and I did have strep throat.

I get this every time I mention my intermittent breathing issues, too - the doctor listens to my lungs, says they sound fine (yeah, and I'm not having any trouble breathing at the time, either), and moves on. Granted, I have a tendency to downplay things, and I'm terrible at trying to explain or describe things, but it's still very frustrating.

Write it down in dot points.
I use my iPad or phone.
You can ask them to print out what they've recorded about you too.
I didn't know that until recently.

Like someone else said, if you have a regular doctor it's easier.

light-on-scope - "otoscope"

From my experience - doctors in general are very practical people. You start with the most common problem and rule out stuff from there go on down. I'm assuming you look like any regular adult. They're not expecting you to have pathologically impaired communication skills. They're expecting you to volunteer all possible relevant information to the best of your judgement, especially in this time of WebMD and Youtube where people come in with a list of diagnoses. Yes, they should take a proper history, but it's just facts of life that people are less efficient in practice than they are in paper. The doctor who actually goes through a thorough history-taking session each time out is such an anomaly...

It's possible that you have a legit ear issue unrelated to ASD, but most of the investigations can't be done at a GP's anyway, so he'd have to rule out stuff and then send you on for an CT, MRI, blood panels, audiometry workup... none of which you'd really jump on for someone who has a mildly painful ringing ear that looks normal on otoscopy. If you don't present it with urgency, ringing in your ears isn't an urgent complaint. And what is he going to do about a mildly painful ringing ear and some headaches? He doesn't have some new age therapy for tinnitus and headaches. How are you going to treat hyperacusis even? If it's sudden, sometimes you can use steroid therapy, but really the main thing might be were they expose you to noise at a certain frequency to desensitize you or something like that, which I really do believe you'd have to go to a specialist clinic to do.

He'd have to rule out common stuff that he can't fix and then refer you to them.

Even if you go in to a specialist - they're looking for something visible on examination or for you to suggest something that's a red flag, like hearing loss, blood, pain...

Think of it as going to a mechanic. You can't just park the car there and say it makes a noise sometimes. You can, but you're just going to get a tune-up more likely than not. If you want a full diagnostic work-up, you have to make it sound like a full diagnostic work-up might be needed.

Not to play devil's advocate, tho. Doctor's should be more efficient. But as a patient, it's also your responsibility to present your complaint. I don't want to sound patronizing, but if you have trouble with this, it's okay to carry someone with you, like a parent or confidant or partner who can be a middle-man for you and relay your concerns. You might be embarrassed but if you can't say what's wrong, that's the next best option. Writing down the complaint is good two, but any good doctor would have additional questions to ask to any information you give him unless you're writing down the diagnosis for him.

A mechanic can always jump in your car and drive it for some miles and figure it out for himself if push comes to shove, but unless you're an infant, stroke patient or senile, they expect you to be able to do this for yourself. ASD is not a thing people generally make accommodations for, so you're going to have to take charge one way or the other or end up herded through familiar channels for them. Like a sort of default assessment.

If you do go back to see him, just by returning he'll understand, "Okay, this is bad enough for a person to come here twice and it's not wax congestion, let me broaden my differential diagnoses to include..." and he'll ask you more significant questions and expect you to provide more clarifying information.

Don't assume expert intuition and foresight on the behalf of these people. In the case of ASD, you owe it to yourself to go in prepped and ready, because we're probably the most easily shunted and wrongly sorted batch of people under the sun. It's a very frustrating and agonizing adventure if you just let them direct you according to how they sort out the normal people.

I don't think it's just communication issues. I've nearly lost my life twice because of not being taken seriously by doctors. The first time I had quit smoking for a year but had a lingering and worsening cough and went to my doctor for it. He took lung x-rays and told me there was no problem, it was probably just an aftereffect of smoking. A year later I ended up in isolation in the hospital with tuberculosis that had spread to my intestinal cavity, with a one-in-six chance of surviving. I even had a doctor tell me to consider having the total parenteral nutrition turned off that was keeping me alive - to let myself die. When one of the doctors looked at the x-rays my primary care doctor had taken before, he showed me that there were two clear spots of TB on them - my original doctor apparently never even looked at the x-rays. The new doctor mentioned negligent malpractice, but I was so desperately ill I couldn't think of a lawsuit. Another time I kept seeing a doctor because I couldn't keep my body temperature up despite keeping my house at 85 F, the hair had fallen off of my arms and legs, I became cognitively impaired despite drinking huge amounts of coffee - he just kept asking me to come back if it didn't get better. I remember sitting at home basically waiting to die. Eventually I started losing consciousness while driving and ended up in the emergency room - they did some simple blood tests and found that my thyroid level was so low that I should have been comatose. In both cases I was clear about my condition to the doctor and they failed to act responsibly with diagnostic tests. I had a friend once who was a nurse and she had some real horror stories of her own to tell about doctors' sloppiness. And if you don't look classically sickly, especially if you're autistic and don't show the emotional desperation the doctor may expect, it's easy to get dismissed. Doctors are human and can feel uncomfortable around autistics as well. I'm fortunate to have a great doctor now who is serious about looking into conditions that I have. I like the suggestion about writing down symptoms and issues - I do that myself because I can easily forget something relevant in the doctor's office.

I've written lists for medical appointments before, but once I get in there several things prevent me from using my notes -- sometimes I'm forced to put all my stuff in a chair across the room, they always make me take my sunglasses off & those rooms are too bright (I can't see well in bright light & it gives me a head & eye ache), the things I have written are not answers to their questions & I don't know how to give them information they didn't ask for (there are multiple people in the clinic that asks me questions & it gets confusing when I was talking to 1 person, they leave & another person comes into the room -- then have to repeat myself sometimes.

I hate medical appointments & will avoid them -- I have 2 teeth that need to be pulled (discovered Jan 2017), but haven't yet been desperate enough to make the appointment. Don't do well with anyone in my personal space.

I don't think I look or behave "normal" enough for it to be assumed there isn't something off about me. And weirdly, I did try to tell him what the problem was, as I noted when I got in there and said "I have a problem with my ear," but what started the whole thing going sideways was he wasn't even listening to me. That was basically all I could say before he started talking over me, quickly looking in my ear, and then walking away making assumptions that were not correct without bothering to ask. If he was starting at the mild end of a process of elimination, he could have communicated that. He could also have listened to what the problem was to begin with.
I didn't mean a full medical history should be taken every appointment, but severe headaches and problems with hearing could be something else worthy of asking, especially as I was a new patient to the whole practice.

It isn't an urgent complaint - I noted that I don't think it's a hugely serious issue or anything, but I am very sensitive to noise and this ringing is uncomfortable, and could be an indication of an infection or something that I have to have cleared up. Also ear-related problems, left untreated, can end up damaging a person's hearing. Just because the issue isn't life-threatening doesn't mean the patient doesn't want it resolved. What is he going to do about it? What about diagnose and treat it? There are treatments that can be applied to both, had he made an accurate diagnosis. If the tinnitus is due to an ear infection for example, and he correctly diagnosed that, antibiotic drops would likely treat the problem. He's a doctor. I expect him to diagnose and treat whatever is wrong with my ear. That's hardly new age. It's medicine, which is his job. If he believes I may have a further problem and should see an ENT or audiologist, that's fine, refer away.
Ironically because he was so dismissive and useless and hard to communicate with the first time, and I have now added dizziness to the list of ear-related symptoms, but if I do go back and go through this process again, it won't be with him.

Me too, and that's part of the problem. I don't trust them anymore. I've had specialists and surgeons discriminate and grossly misdiagnose me, which had me in chronic pain for years. It was only my own research (somehow, while on morphine) that ended up curing my illness. If I had trusted that they were capable and knew more about medicine than I did, or let them fob me off, I'd be dead. No question.

The last time I went for a general checkup, the guy didn't even look in all the holes in my head. I think he was preoccupied, and felt no incentive to do more than was necessary to collect his fee. It happens a lot. I've also been sent to another hospital with less time left than an ambulance would need to make a rigid appointment time. That ruined the whole treatment.

I totally relate to this in my recent life.

In my case, and in my country, I put it down to the NHS funding being severely cut. In my country I feel like doctors now really do want to "sweep you out the door" with the bare minimum of care and avoiding referrals, in order to save money spent from the system.

For the last several years I've been experiencing severe pain across my left chest, left shoulder, radiating down the left arm and up the left neck, in sporadic phases off and on.

When I first experienced this, it went on for a few days and, knowing that these can be heart attack symptoms, and coming off of hearing that a similar-age friend had these pains for a few days and when he finally went to a hospital, they informed him it was a heart attack, I decided to go too.

Eight hours later in the ER/Accident and Emergency, they had done lung tests, heart tests, and said that because they couldn't find anything, it was probably just some kind of musculo-skeletal "tearing and inflammation" and told me to go home and take store-bought ibuprofen.

And that was it. They didn't even look into WHY I had "tearing and inflammation."

I also later saw on my report they gave me, that the heart tests did in fact find an electrical problem on one side of my heart. I had to look it up on the net! And when I looked it up, apparently if you have this problem, it's fine unles the other side of the heart develops it too -- and then you are instantly dead.

Great. So they didn't even tell me "We don't know what your muscle thing is but oh yeah, we did find out you have this heart thing that could kill you if the other side goes wonky too."

Two years later, I've been having this musculo-skeletal pain fade, then come back again, then go away after a few weeks, then come back again, then last for a few MONTHS, then fade away again --- so I go to the local general practitioner I'm registered at but have never gone to before, and they don't actually know me.

She sees the ER visit notes, confirms my heart seems fine, and sends me away with just a stronger pain killer prescription. I spend a lot of money on those pills and they don't even work the way the ibuprofen did.

And years later again, I'm still getting these bouts of severe pain. I don't even have the heart to go back to that doctor. I feel like TWICE I've been fobbed-off and told to go home and take painkillers. Twice a doctor has not even had the intellectual curiosity to say "Wait a minute, what is actually CAUSING this whole thing? Lets get you to a specialist, lets take some blood, lets do this, lets do that."

Nobody has even wondered WHY am I having this pain for years now? I've even had changes in lifestyle and work situation yet the same pain comes back in the same places, so it doesn't seem to be a stress injury or it would have altered with the changes in my activities. NOBODY in the medical profession has cared to look into what the hell this is. They have just told me to medicate the pain.

I'm not a hypochondriac, in fact, I'm the person who resists bothering doctors, and it takes a LOT to get me to go to one. But this pain was so bad I did try twice to get help. And I'm a person who never goes to a doctor. It was even the first time I'd met anyone at the practice I'd signed up for years before.

I'm very disappointed in the lack of care I've received. I'm not an attention seeker, I'm not a hypochondriac, I'm the opposite, I never bother the doctor for no good reason or for trivialities, and they should see that in my records, yet they were dismissive of me.

I also have several other symptoms going on, though most of my life I've never had anything wrong with me. But I feel too disheartened to even bother going back with that laundry list of stuff that is also going on with me.

I do think there is something wrong. I do think I have some kind of physical condition and it needs to be diagnosed and treated, but I feel like I haven't been taken seriously.

I've written down stuff for doctors. Particularly for new ones who I don't know. Seems to work for me.

In the USA, I think it helps a great deal to have private insurance. And a real problem if you are on medicaid (SSI) because they don't get much money from that.