I'm Not a "Good Patient" and You're Going to Have to Deal

You deserve good medical care and respect for your bodily autonomy!

I grew up such a compliant kid - you said "jump," I said "how high?" So much to unpack there, but that's about six more blog posts...!!

But you know one place where I'm not compliant? Where I've always said no? The doctor's office.

I've always had this anger when someone tried to touch me without my okay. This is my body, not yours! And when I go to the doctor, I'm somehow expected to drop all of that and let someone else poke and prod me, weigh me, touch me, tell me to get undressed, not explain what they're doing, tell me what pills to take...And everything in my body SCREAMS no.

Until 35, there were even odds I wouldn't make it past the waiting room. I'd be so anxious and anticipating these demands that the slightest unpleasant tone or sharp comment would be enough for me to leave.

But I'm getting older, and my body is having real health stuff that's not a good idea for me to ignore. So here's what I've learned about how to be a real pain-in-the-ass patient (my self description, and there's some serious internalized ableism in there that I'm still unpacking) and get medical care.

Setting the Foundation: Trust Takes Time

One of the most powerful things you can do is help providers understand your needs upfront. Here’s what I tell new healthcare providers:

“My requests may sometimes seem like I’m being difficult at first, but I have a lot of anxiety and it takes time for me to trust a provider. However, once I find a provider and we establish a good relationship, I will be a long-term patient. I really want to know and trust my provider, and I appreciate your understanding that it takes time for me to feel safe.”

I let my doctors know up front that I'm going to ask a bunch of questions, challenge them, and generally not comply unless they give me a good reason. I'm going to sit on the chair in the room and not undress unless there's a logical reason why it's necessary for me to do so. I'm going to want to know the pro's and con's of each suggested treatment, I'm going to have my partner there, and I'm going to ask for them to turn down the music.

But you know what? If they can sit through an appointment or two like that - okay, maybe several - I will start to trust them, and I will turn into the most patient, kind, helpful patient ever.

The Weight Conversation: Challenging Routine Procedures

Not every medical procedure is necessary for every visit. When staff ask me to step on a scale, my first thought is "no, this isn't necessary." Because it's NOT!!!

Here's what I say:

“I’m going to decline being weighed today, but I’m happy to tell you what I weigh.”

Usually it’s the medical assistant who presses the issue. When that happens, I say:

“I’d like to talk to the doctor about this.”

When I speak with the doctor, I explain:

“Being weighed causes me anxiety and feels invasive to me. I’m happy to tell you what I weigh if you need that information for my care.”

If they continue to insist that I must be weighed, then I have the trust conversation:

“If you don’t believe me about my weight, that’s a pretty tough place for us to be as doctor and patient. If we’re starting this off with you not trusting me, how are we possibly going to work together?”

If they need an exact weight cause they're prescribing a medication, especially if they've been kind generally, I'll go back out in the hallway and get on the scale. I'm open to logical arguments and kindness. But don't think I'm going to do just do what you say because it's standard protocol.

Getting a Mammogram

When I needed a mammogram, I knew it was going to be tough. My whole life I haven't been able to tolerate touch on certain areas of my body. Even thinking about a mammogram made my body freeze up. Autistic women experience very high rates of sexual abuse, which is an added issue on top of general anxiety and sensory issues.

I called the clinic where the mammogram was scheduled, explained I was a sexual assault survivor, and that I needed my partner in the room with me. They immediately said no. I was stunned. "With the number of women who have been sexually abused, how can you possibly tell me you're not able to provide care that lets them have someone safe in the room with them?"

It took me no fewer than six calls and conversations with the staff and eventually management to get them to to move on this. I was completely ready to not have a mammogram, which I'm guessing is what most people in this situation do. But I literally run a company teaching people how navigate the world as an autistic person, and my backing down on this seemed like the wrong thing to do. They needed to change this policy and it seemed like such an easy fix that could benefit so many others, too.

Eventually we came to an agreement that my partner could be in the room and stand behind the counter with a lead apron on to prevent exposure to the radiation involved in a scan. I was gritting my teeth and panicking and trying to hold it together as the touched me and moved me around in all sorts of ways. They eventually hit the button for the scan and at some point in this process I totally melted down and was having some kind of PTSD related flashback. All I remember is being on the floor, screaming "no" and sobbing hysterically.

After that, they suggested my partner help with the rest of the procedure. The radiation tech told her what to do, and she helped get me into position so they could complete the scan.

If you are going in for a mammogram, and have any concerns about sensory sensitivities, bodily autonomy, or having intimate areas of your body touched - please, please bring an advocate and have them come in the room and help with getting you moved into place for the exam. We need care, too, and these are very minor changes that can make a really big difference in getting that care. Don't let them make you think that you're a problem for asking to have someone you feel safe with in the room and helping with the adjustments.

When You Can’t Follow Every Recommendation

Providers sometimes act like if you don’t follow every recommendation, they won’t see you anymore. When this happens, I explain:

“I’m going to do as much as I can, and I need your support in that. I recognize I may not always follow all the recommendations you have, but please understand that if you scold me or give me a hard time about that, I’m going to feel like I can’t come back to get any care at all. I understand that I take some risks by not following through on all treatments or diagnostic tests, but I’m doing the best I can. I really ask you to trust me and work with me on this.”

This approach does a number of things:

- Acknowledges their medical concerns

- Sets clear boundaries

- Explains the consequences of a punitive approach

- Asks for partnership rather than compliance

And you know what? This is okay!!! We've been trained that we have to do exactly what other people tell us with OUR bodies, and I'm here to support you in questioning that assumption from the very start.

When to Walk Away

Sometimes, despite your best advocacy efforts, a provider just won’t work with you. I’ve learned to recognize these red flags:

- Dismissing your concerns or knowledge about your own body

- Refusing reasonable accommodations without explanation

- Using shame or fear tactics to pressure compliance

- Making you feel like you’re “difficult” for having basic needs

Remember: You always have the right to find another provider. It's going to take some time, and yes you need to make sure you are still able to access time-sensitive care in the process - if you've got a serious medical condition, dropping your provider before you have a better one may not be a good choice. But in the long run, a good medical provider really matters.

The Long Game: Building Relationships That Work

Once you find providers who respect your needs, healthcare becomes dramatically easier. And while I'm going to advocate for myself and probably not be the easiest patient at the start, if I know a doctor cares and is trying, I'm going to do my absolute best to maintain that relationship. I'll be super grateful, kind, patient, and tell everyone I know how great they are.

These relationships are worth investing in:

- You can focus on your actual health concerns instead of fighting for basic respect

- Providers learn your communication style and preferences

- Trust builds over time, making difficult conversations easier

- You get better medical care because you’re actually comfortable engaging with it

Scripts for Common Situations

Here are some helpful scripts for navigating communication with providers:

Requesting accommodations:

“I need [specific accommodation] to be able to participate in this appointment/procedure. Can we make that work?”

When pushed to explain your needs:

“This accommodation helps me engage fully with my medical care. I’m happy to work with you on the logistics.”

Setting communication preferences:

“I process information better when it’s written down. Could you email me a summary of today’s recommendations, or would I be able to find this on a patient portal?"

Declining unnecessary procedures:

“I’m going to pass on [procedure] today. Let’s focus on [your main concern].”

The Bottom Line

Medical self-advocacy isn’t about being confrontational - it’s about creating conditions where you can actually receive good healthcare. Sometimes it might feel confrontational when you ask for your basic needs to be met if the clinic or provider isn't open to that. Still, you have the right to be treated with respect, to have your needs accommodated, and to be an active partner in your medical care.

Your autism isn’t something to overcome in medical settings - it’s information that helps providers give you better care. The right providers will see accommodating your needs as part of doing their job well and will work with you.

It takes practice, and being scared, and doing it anyway. Sometimes you’ll have to walk away from providers who won’t work with you. But the alternative - avoiding medical care or enduring traumatic healthcare experiences - isn’t a good option.

Sending hugs. We can do this. And we can make it better for the next autistic person that provider meets.

If you are looking for support being yourself and getting the care you need at the same time, feel free to reach out to us! You can request a consult by completing the contact form or emailing schedule@facilitatejoy.com