Dealing with medical professionals

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I don't know if I'm posting in the right section or not, but I found out last week that I'm seriously ill.

I saw my GP in December and she booked me in for a blood test as she hadn't seen me for years. Because there were abnormalities, my doctor arranged for me to see a specialist, and I was told that I'd have to travel to a hospital out of town. This filled me with dread because I'm unable to use public transport so I had to get taxis which were very expensive.

The consultant I saw had an appalling bedside manner and was quite rude and blunt. When I told him I had Aspergers, he just looked away and nodded and didn't make any effort to put me at ease or ask me if I was comfortable. He then fired questions at me and told me that he didn't know if my condition could be managed, and that I'd likely need to have a biopsy, which could possibly have fatal consequences! Although I'm glad I know what I've got to face, I wish that the bad news had been delivered in a kinder, more sensitive way. There were a lot of things that he didn't explain properly either, and he used lots of medical jargon which I found confusing. I was in shock, and when he asked me if I had any questions, I just said no because my mind went blank.

A older relative came with me, and although she's usually assertive and able to ask questions, because she's very hard of hearing she didn't have a clue what he said. She did ask him to speak up but he refused and moved further away. I really needed someone to speak up for me at that time but at least she was there for me.

I'm wondering if this kind of experience is typical for people on the spectrum?

Unfortunately I've got to see that doctor again in several weeks but I don't want to. Am I allowed to request to see someone else and will it affect how I'm treated if I do?

Also, does anyone know where I can get a support worker or an advocate? Will they be able to attend appointments with me? I've contacted various mental health organisations via email but they all say that they can't help.

I'm not sure if your experience is typical for all autistics, but it is very familiar to me. I recently had to take taxis to a couple of doctor appointments out of town, which aren't cheap. My sensory issues make it difficult to drive long distances on unfamiliar routes, and I have a hard time navigating public transportation because of the complexity of bus schedules and all the route transfers. I anxiously obsessed about those trips and appointments for weeks ahead of time. I've had incredibly bad experiences with doctors, nearly dying because one didn't look at the lung x-rays he had taken which showed tuberculosis after I told him I had a long-persistent cough. He just didn't take my complaint seriously enough to even look. A year later when the disease had greatly progressed I had another doctor walk in and bluntly tell me to seriously think about having the machine that was keeping me alive turned off because my chances of survival were very poor. Fortunately that time I had a friend present who told me not to listen to that doctor. I nearly went into a coma after another doctor failed to test my thyroid level after I repeatedly saw him for what turned out to be the classical symptoms of thyroid failure - it's a very inexpensive and common test. I don't think he took me seriously about the severity of the symptoms I was having - due to my autism I somehow don't verbally signal the importance of issues on occasion.
I learned two things that help me cope with that kind of treatment from doctors. One is to learn how to talk to doctors on their own terms. I carefully research conditions, their causes and treatments in depth in advance of speaking to them. Over the decades I've learned the terminology they use and I speak to them like a detached fellow observer looking at my case and they reciprocate with lots of technical information and insights. Being detached as opposed to emotional prevents the cold reaction that many doctors use to shield and insulate themselves from patients' "neediness". The change in their demeanor when I approach them this way is like night versus day. Many doctors (and veterinarians) actually become friendly and chatty and technical and will provide all sorts of information that they otherwise are reluctant to speak when approached like this. Doctors will often conceal information if they are afraid the patient will inappropriately/uselessly seize upon it in desperation or ignorance - it is something they have to deal with on occasion. So I stay analytical with doctors and vets. Of course I can get surprised with a new condition that I haven't researched, but I can always fall back on standard questions about etiology and mechanisms, presenting symptoms, progression, etc. Generally I will write out a list of questions ahead of an appointment, or lists of important information (like medications I've been on) because I can go blank in the office.
The other big lesson I learned was to find a primary care doctor who understands my variety of health problems and with whom I can communicate - who knows I'm autistic and takes the time to communicate details of medical issues (rather than just telling me to take a medication or have a procedure). She has an "integrative" practice, meaning she considers nutrition, genetics and allergies, lifestyle and psychological issues (like stress) in addition to the purely medical. When I see a specialist, I make sure to get the diagnostic results and diagnoses released to her so that I can subsequently discuss them with her and get a full understanding. I feel better knowing that she has the big picture and that she'll alert me to things that are urgent. I'm in the US - I don't know if the English health system has primary care doctors or integrative medical practices. I'm not sure letting nature take its course works too well - I tend to do that because of aversion to doctors, but with the TB and thyroid failure I had I got extremely sick trying to wait the conditions out. I've come to accept the fact that I will need relatively frequent visits to the doctor and medical facilities - in fact it's turned out to be a positive thing because I get better-than-average prompt attention for other conditions that happen to develop.

Thanks for your reply.

I've only been seeing my primary care doctor (GP) since last December and she's excellent. She is knowledgeable about all of my conditions, and always takes the time to listen and explains herself very well. I'll be seeing her soon so I'll definitely look into her receiving my diagnostic results and going through them with her.

I've been researching my condition since December, and knew what the outcome would be before I got my diagnosis so although I've been mentally preparing myself, it is still a lot to absorb. If I'd had the confidence, I would have been able to discuss my illness with him because I do know quite a lot about it - just not a lot of the technical terms. I'll do my best to educate myself more though, and try to find the courage to ask questions rather than just sitting there and only speaking when spoken to! I think that give and take is important, and although I agree that the patient should do as much research as possible, the doctor should also make more of an effort to be concise, and use layman's terms whenever possible.

Another mistake I made is not writing things down. My mind always goes blank when I'm put on the spot, so I'll make sure I do that next time.

A bit over a year ago, I had a simple fracture of my thumb. Getting treatment was far more distressing than the injury. I was simply a necessary inconvenience in the billing process, but the schedule was driving me mad from lack of sleep. I don't trust blood tests, either. I recently had one that didn't pick up on an infection my dentist could easily see.
Sometimes switching hospitals can help, and sometimes you just get shunned as someone with opinions. The ideal outcome for many "physicians" is to turn people into vegetables needing expensive drugs. They have been brainwashed by the drug companies, and fed false data for decades.

Some medical practices are truly like "patient mills", assigning the best-guess diagnosis and then prescribing medication, often with little follow-up.

In my own case, with decent doctors who listen, I've found that writing down things like symptoms and questions really helps. I don't think in words and often I have trouble processing new information while at the same time translating between thoughts and speech. And sometimes my short-term memory just suddenly empties, so having things written down helps me not to forget things I think are important. I've read that life expectancy for people with autism and other neurodevelopmental conditions is significantly less than that of the general population, even when a healthy lifestyle is followed. From my own experience and from what I've heard from other autistics on WrongPlanet there is some sort of silent signaling that NTs do automatically that solicit the attention they need from others but which we lack. It's not uncommon to tell a doctor or professional something really important but have them act as if they hadn't heard or just outright ignore it. Maybe it has to do with eye contact, tone of voice, body language, facial expression or something similar. We seem to communicate directly and literally and this can lack some sort of emphasis or indirect signaling that denotes a request for attention that NTs instinctually use. To use a metaphor, even when trying our best, we can directly point out a serious health condition, but get ignored as if we're looking at the ground, hunched over, speaking in a whisper in a monotone voice with our hair hanging down over our eyes...

This thread in the Women's forum addresses barriers to good health care for AS women, you may find something of use to you there also:


viewtopic.php?t=286363

^Thank you.

I'm sorry you are unwell and I hope you get the help you want but I don't deal with medical professionals and I have a hard time using the term 'professional' to describe them because I think the majority are anything but. I honestly would rather die than go to a Dr. They have caused me major problems in the past and I refuse to let them do so again. That may sound extreme but it's how it is. I came to this position when I was hospitalized a few years ago. It was a horrific experience and the reason I was in hospital was because of medical treatment going horribly wrong. If Dr's hadn't got involved in my life I would be much better off. Lesson learnt, never again.
I'm meant to see an endocrinologist but I don't. The one I was seeing was incredibly rude and treated me like a toddler. Being educated on the subject was of no use what so ever. Even when he was wrong, he didn't apologize, just brushed it off and was irritated that I wasn't happy to blindly accept any rubbish he said. I've had that problem with Dr's before. Being educated is not viewed positively by the ones I've met.
I have a 'living will' just so that if I ever find myself unable to tell Dr's to F' off again, ie being in a coma, I don't need to. It's all written down and legal. Nil medical intervention, nil life support. My Husband knows to hand it over if I accidentally wind up in a Hospital. As I said, I would rather die than have Dr's involved again.
I hope your experience isn't as traumatic as mine. Good luck.

Maybe that doctor doesn't really know anything about ASD and thus has no concept of what accommodations he might have to make for you. Even if he knew about ASD, he still wouldn't know what your particular symptoms are and thus couldn't guess a perfect way to communicate with you. It also sounds like he didn't really care, anyways. He probably just communicates very bluntly & directly and that's that. Personally, I'm okay with that type of communication from a doctor - especially if they're correct and/or a specialist who's knowledge & expertise I need.

The fact that you went into shock and didn't really hear whatever else he had to say and then responded that you didn't have any questions etc isn't necessarily an ASD thing. It's a human thing. People react that way when being told news of a possible terminal illness. It's extremely common when people are told they have cancer, or that it's spread, or that their condition cannot be cured etc. That's why it's ideal for almost everyone going to such appointments to take someone else with them who's job it is to remain calm, listen, ask questions etc regardless of whether you're ASD/NT.

Do you not have any other family members or friends nearby?

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No for supporting trump. Because doing so is deplorable.

Firstly I'm sorry that doctor brushed off your Asperger's so abruptly and treated you so poorly, unfortunately like all people there are all sorts of types of doctors.

I work in the hospital system currently so please ask me any questions you may have if I don't address something here. You can reach out to the hospital and ask to speak to the patient advocate, it's best to call during business hours since likely after hours you'll get the nursing supervisor. The advocate can help make sure that your concerns are properly addressed and help see if there is another doctor you could speak with. I've also seen, and used myself, cards that explain what autism is and have things like "I need time to process your diagnosis. Please give me a few minutes to come up with questions." or "I can't understand medical jargon please use plain language." Also feel free to talk to the nurses on your way out and ask them questions. They may call the doctor back over if they can't answer sufficiently. Hope this helps!

I can't imagine anyone I know going to the doctor's with me. What we need are savvy patient advocates in a long-term relationship. I'm sure that advice about asking questions and giving the hospital feedback is good, but I'm already at the limit of what I can do along that line, and have decided to die outside of the system.