Can masking hinder our ability to get quality medical care?

Posted by Chris, Volunteer Mentor @auntieoakley, Jun 12 2:08pm

We spend our lives learning how to fit in, get along, or just disappear. In my case I try in that order, sometimes that is a rotating schedule. Masking becomes a huge part of that, I have recently read or had discussions about how this has adversely affected the ability to get quality medical care in the moment or in the long term. Sometimes it is being taken seriously since masking also includes any pain or struggles that would allow us to be recognized or singled out. Sometimes it is not being able to drop the mask and be seen by our providers. How have you experienced this? Do you have any tips for managing this? In a time where you have to accept the doctor you get, does this worsen the problem?

Interested in more discussions like this? Go to the Autism (ASD) group.

@auntieoakley I pondered this dilemma for the overnight hours, and how to respond. As a fellow Aspie, your coping mechanisms are certainly familiar to me!

I have been very forthright in communicating with doctors and medical people since 1988, when I was diagnosed with Systemic Lupus. At that time, there was no definitive testing for lupus, it was basically "let's do some bloodwork, look at symptoms, and then decide which blood tests to do next" type of thing. If I had not spoken up when I did, the one dr could have put me into medically-induced diabetes rather than address the underlying issue. I changed away from him, and then overheard him disparaging me to his replacement. I came out of the exam room, half-dressed, to have a show-down with him in the hallway! After that, I saw my chart had "DP" on the front, for "difficult patient".

These days, in light of my decision to seek quality medical care, I have learned to be more polite, and still get my points across. And I often tell my providers that I am on the ASD spectrum. At times they will ask how I am affected by that in daily life. Some are genuinely interested, some are seeking information for their own education on how to work with patients with a similar diagnosis. I have no tolerance for those medical professionals who treat me in a less-than-beneficial manner, and will address it by switching to another person. I educate myself as completely as I can on my conditions, in order to be able to speak somewhat intelligently when need be, and to be able to ask relevant questions.

At times, when listening to a doctor, their words seem to tumble around in my brain, and I may miss something important. Now, I don't hesitate to take notes, to ask them to repeat themselves. I will sit in my car afterwards and flesh out the notes, adding in the details as I recall them, while it is fresh in my mind. I let the dr get out his information so I can understand where he/she is coming from. I still ask questions, and often have questions prepared for them.

Do I mask? Yes. Do I try to fit in? Yes. This gets me a more positive response from staff, as they often see patients who are uptight, scared, and shut down. Seeing a friendly engaged face, with smiling and a bit of humor, will many times give me a more engaged and lucrative experience. However, after a length of time with a provider, my mask may slip.
Ginger

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