Now, what shall I tell my new doctor?

doctor talk to a robot
I’m on the left, trying to explain myself…

Interacting with doctors is one of my least favorite things to do. But it’s got to be done. I just got a new doctor a few months ago, and I need to meet with her tomorrow and talk her through the aspects of my life that may impact my ability to interact with her, follow her directives, and also factor into her decision-making process. I don’t want to go on record as being autistic / Aspie, because even though I live in a major metropolitan area that’s chock-full of scientists and researchers and great hospitals, there is still a ton of misinformation and really awful assumption that can keep me from being seen / treated as a fully functioning human being, if “Autism” ends up on my medical chart.

I could see this as an opportunity to educate this new doctor about my situation, to bring her up to speed on women and autism, which would be wonderful – if it were even possible. I, however, am simply a new patient who has a long record of inexplicable behaviors which probably got chalked up to “attention-seeking” (healthcare providers of all types apparently love to describe women patients that way), not to mention an extended series of boondoggles into the wilds of trying to figure out what all my maladies are about. Precious few of them showed up on any measurements… thus, I must be “one of those” who’s just a vexation and doesn’t really want to cooperate or comply with the doctor’s orders.

Disclosing my autism assessment last August can open up a whole other can of worms, and this is when I feel at my most disabled — completely incompetent and unable to fully express what’s going on with me in a way that is meaningful and makes sense to the person sitting on the other side of the desk from me.

So, as my anxiety levels spike, and I end up replaying every . single . failed . interaction . with . doctors in my head (not a good use of time, to be honest) I decide, once again, to just work around the subject of autism. Talk about my issues in non-medical, non-DX terms… just naming them as things that make me the unique person I am.

Like most autistic folks, there are a number of significant issues I’ve got with doctors. If this were a drinking game, and you took a sip/shot of your favorite alcoholic beverage every time you you agree with or have experienced something I’m about to say, a lot of us would be dead of alcohol poisoning, I’m sure.

First issue is, of course, all the sensory overload. I have to drive about 45 minutes into the city, where I have to find parking, and then I need to get myself up to the 8th floor, where the offices meander throughout an old former apartment building, filled with scents and lights and people and unfamiliar stuff. It’s a little much.I also shift into non-verbal mode, when I’m under stress, which makes it even more difficult to communicate. Throw in a dash of selective mutism and… Ugh.

Second issue is with eye contact and how it doesn’t mean what a lot of doctors may think it means. It’s not an attempt to avoid interacting with them. It’s an attempt to interact more effectively with them.

Third issue is with processing speed. It’s already a little slower than I’d like (I’ve been tested), and when I’m under pressure, it gets even slower. So, between the non-verbal kick-in and the sensory overload and the mounting anxiety of dealing with someone who literally has life-and-death power over me… my processing can slow to a halt.

I’m getting tired, just thinking about it all. There are even more issues.

But I need to sort this out, figure it out. I’ve messed up so many interactions with doctors in the past, I have no interest in repeating the performance. Plus, I can’t just change doctors every year or so, which is what I was doing, for a while. I need to develop a decent working relationship that’s collaborative — and which makes room for me to collaborate.

So, I’m spending some time today getting a bunch of stuff in writing, so I can take it in and just hand it to her. And have it in my record. I don’t need to make a huge deal out of it, but I do need her to understand certain things about me.

Like: I don’t just act out of fear – especially when it comes to questioning the wisdom of “routine” medical procedures. I actually have logic to back up my decisions, and as a rule I put a lot of thought (and research) into everything I decide.

Like: If I argue with you, it’s not a sign of disrespect. It’s because I take responsibility for my own health and well-being, and that means a lot of active engagement, even if it treads on the toes of authority figures.

Like: All of this is incredibly difficult for me, and if I seem to be difficult, it’s not for lack of trying. I’m probably just getting down on myself for not keeping up.

Then again, do I really want her to know how difficult it is for me? I’m not so sure. That can work against me. The last thing I need, is to be considered incompetent.

Anyway, it’s all food for thought. Keeps me on my toes.

Now, to write up my little missive to her…


16 thoughts on “Now, what shall I tell my new doctor?

  1. I so deeply hate doctors too.
    All the sensory everything (people, touching without consent, poking and probing etc, too much lights, sounds, smells etc), the attitude most doctors have (gods who never make mistakes… yea dream on docs), just … everything.
    I have physiologically had nightmares about hospitals. Like, I get lost inside giant hospitals, and I don’t see anything and can’t find out, if I find a door it’s locked. Blind dreams where you are in a bloody hospital and can’t find out. Gee, just like some possible bad time previously experienced in this life. If I see a doctor IRL now, I don’t even bother to remove my dark shades or blackout bands, unless it’s an eye doctor (those are a bit more tolerable. I’ve also had some good chats with a few of them about braille, dyslexia, bad colorblindness, and prosopagnosia – none of which would be comfortable to even bring up on a non-eye doctor). So no eye contact. I’d probably also record the audio since I’m so frustrated with the past unpleasant doctors, so I could at least prove exactly what was said. And then, either show them my notes on my ipad (nope, they can’t have a copy), or even better – make them listen to my ipad reading them out to them with voice. As that should force them to listen to a bit better, without interrupting every 7 seconds.
    Anyway… interested in all aspie tips in how to talk to them better.

    And best of luck for tomorrow ❤

    Liked by 2 people

    1. VisualVox

      I can relate. I have nightmares about having to find my way through massive office complexes / campuses, and although I never think about them as nightmares, there is a nightmarish quality to them. But I keep soldiering on, till I get where I think I need to go. It’s like my life, actually. Wandering in a massive, convoluted maze of what-next, never knowing for sure where I’m going, never actually recognizing anything around me… but keeping on.

      I’m considering wearing a hat, to block out the horrible overhead lights. I could do sunglasses, too, I suppose. Maybe I’ll try that, since the lights invariably bother me. Then again, the environmental stress gives me a little adrenaline fight-flight boost that focuses me, so that can come in handy — so long as I’m not doing any complex thinking. Oh… how am I going to avoid that? Dunno. I’ll figure something out.

      The biggest problem w/ doctors is that I can’t ever seem to talk to them in terms that make sense to me. They don’t think I should be using medical terminology. And when I tell them how much I’ve studied, I think maybe they get intimidated. It’s not my fault, if they don’t keep up on the research. I have personally known doctors who did, so I know they exist. I just can’t ever seem to find any who will be my own doctor. It’s pretty frustrating. I guess maybe I’ll just get through this interaction today and keep it simple, until I get to know this doctor better… assuming that happens.

      Liked by 2 people

  2. It depends on how you word everything. Express things using common words, like anxiety. Explain that due to your anxiety, it is easy to become overwhelmed just during the drive to her office, so by the time you get there, you’re a little slower than other patients to be able to hear what she is saying. Also, bring a notebook with you to keep notes on the meeting. Tell her that because of your anxiety, you will not be able to fully comprehend what she is saying until later, and then at that time you would like to research a bit more as you like to know exactly what’s going on with you. Also let her know that you want to be an active part of your treatment plans, and that she has to listen to you. If she can’t do that, to refer you to someone who is able to accept patients who want to work with their provider rather than the provider dictating everything to them. This method has helped me find the right PCP, the right OBGYN, the right therapist and the right medicine woman. I’m sure it will help you too. Just watch the wording and don’t get too detailed until you’re comfortable with the Doctor.

    Liked by 2 people

    1. VisualVox

      That’s great advice! I appreciate it! I’m going to rethink my approach today – I don’t see her till this afternoon, so I can revise and fine-tune.

      I’ll take my notebook and a list of things I want to discuss with her. And you’re right – I need to not get too detailed, which is my default when I’m anxious.

      Thank you so much! 🙂

      Liked by 1 person

      1. That’s why you write it down somewhere, photocopy it. Keep one for you, so you know what you’ve told her or not so you can add as you see fit, and one for her files. Then keep detailed notes on the meeting…both what she’s saying,and after your meeting, if you want to, how she made you feel. Did she listen? Is it a good fit? write it down before you drive home… that way, it’s your immediate responses, without having had a drive to alter them or work yourself up.

        Liked by 2 people

      2. VisualVox

        More good tips. I’ll do that. I’ve left plenty of time between the end of my appointment with her, and my next appointment, when I’ll have a chance to debrief and collect my thoughts. I need to find a quiet, protected space where I can really focus, because I know how I get when I’m in those situations — sometimes I go mute and cannot find words, either inside or outside my head. Main thing for me is keeping my mind clear and keeping my body steady. Oh, I know! I’ll make sure I have some food and water to take in after the experience.

        One of the reasons I’m going to the doctor, is I have to decide on whether or not to have a certain procedure which involves anesthesia. I’ve never “been under”, and I’m extremely sensitive to any sort of sedative. I really worry that it’s going to mess me up. I can’t afford to be messed up. At all. And the procedure is elective – but a lot of people are pushing me towards it. I dunno. I’m not so sure I should do it. At least, not now. Not till I have more information and can make sure it’s not going to mess me up. I’m so sensitive, even throwing my schedule off for a few days can send me into a tailspin, and then nothing gets done. I can’t live my life like that. I’ve got too much going on.

        And I’m not feeling particularly safe, right about now…

        Liked by 2 people

      3. If you drive, think of your car as a safe haven. No one to bother you, you can eat and drink in peace, and you can debrief yourself. If you get there early, you can sit in the car for five min and regain yourself before going in. If you don’t have a car, use whatever transportation you do have.
        I understand not feeling safe. I had a break-down the other day over the same feeling. I wasn’t feeling safe in my relationship. You are in my thoughts.

        Liked by 2 people

      4. VisualVox

        Thank you ❤

        Yes, I’ve got an extra hour of “padding” both before and after my appointment, so I plan to use it well. Taking care of myself… reminding myself that I don’t have to blindly follow what they tell me to do, even though in my mind, they are the authority figures who “know best”, and I want to follow the rules. It’s just my default orientation, but I have to insert myself in the process, that’s for sure.

        Thanks for your support! I’m not sure anybody IRL understands how anxiety-provoking this is, or what the impact truly is for me.

        Liked by 2 people

      5. I’m real, and I get it. I really do.
        As it stands right now, I’m writing a letter to my doctors to let them know what’s been going on with me, because I’ve been having some serious issues, but I know that when they ask me how I am, I will inevitably say “I’m fine” because I get anxious and I don’t want to say I’m not ok. So I get it. Little things can go a LONG way.

        Liked by 2 people

      6. VisualVox

        Thanks – I’m really rethinking the procedure they’re encouraging. Not because I don’t (eventually) need it, but because people are just not hearing me about my concerns, and that leaves me even more vulnerable. I don’t trust them to actually help me in the ways I need to be helped.


      7. I cannot in good conscience tell you my opinion one way or the other as I do not have all the facts, but I will say this: it is an elective procedure (you said that before). You are aware you will need it in the future, you are unsure of it now. That’s OK. But postponing the inevitable will not help you when you do need it, your fears will still be there and still be very valid. What you need to do is not rush. Speak to this new doctor, make sure she answers all of your questions. Bring a list with you. Do not feel bad for taking up her time, she’s your doctor. Any follow up questions you have, fax or email to her and expect a response. When you are comfortable that she has your best interests at heart, and you believe she knows what is right, follow her advice, whatever it may be. But don’t be too eager to ignore her either until the situation is no longer an elective procedure but a necessity. Be comfortable, feel safe, be informed. That’s the best advice I can give with what I know.

        Liked by 2 people

      8. VisualVox

        Thanks – that helps a lot. I’m just not going to get pushed into a situation where I’m even more impaired by anxiety than I already am. Thanks again!

        Liked by 1 person

  3. Pingback: What I told my new doctor – Aspie Under Your Radar

  4. Pingback: Ugh – wish me luck – lots of phone calls today. – Aspie Under Your Radar

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