Follow Up to Going to the Hospital

I heard from many of you wanting to know more about the outcome of my visit to the hospital. Let me put your mind at ease with this explanation.

You can listen to Going to the Hospital by clicking here.

Transcript

I’ve been surprised to hear from many of you about the recent episode Going to the Hospital. One person asked whether my condition is related to autism. I want to go over a few things and answer some questions about that.

My goal was to do an episode about something unexpected that could happen that would require an autistic person to go to the hospital. I also wanted to talk a bit about how the autistic experience is in the hospital.

I think we tend to say we’re fine which is tied to autism in my opinion. When we’re asked, if we’re not thinking specifically about how to word what we feel or we’re asked an unexpected question, we don’t have an answer ready. We might initially not even realize how bad we feel in a way that we can put into words. 

Many autistics are very much aware of their bodies. It’s one reason some doctors look at us like we’re hypochondriacs. They assume that just because we notice every little thing we have a psychological problem. In fact, it’s because we are so sensitive to changes in our bodies. 

I also wonder if because we feel things so deeply we have trouble tolerating even small changes in our bodies. When I’m in pain I want it to go away. 

I know some neurotypicals who, if they get a headache, will just tough it out. If I do, I reach for the acetaminophen without thinking. I just want the headache to stop.  

Social communication is challenging for anyone when it comes to speaking with doctors. There are exceptions of course. There are some doctors who have learned which questions a patient would ask and anticipate them by providing the information up front. That kind of doctor is great for an autistic person. 

I believe I got excellent medical care. I feel like I had really good doctors. I also feel like some of them weren’t the best communicators so even though the treatment decisions they made were the best ones for me, there were times when more or better communication would have helped me understand that. There were times when I questioned to myself whether a procedure or medication was right for me and as it turns out it was, however, my doubts were based on needing to know more.

I found that many specialists have tunnel vision and I that’s understandable. They can see the problem they’re experts at without focusing as much on how it fits together with other issues.

We autistics like the facts, the details, the logic behind nearly everything and certainly regarding our health.

To put your mind at ease, the condition I had is called atrial flutter. It is not a-fib or atrial fibrillation. There is no known cause. That said, when I asked the cause I was told that it was due to an electrical issue as distinguished from a plumbing issue with my heart. By that I mean that the typical heart attack, one caused by a clot or blockage, is a plumbing problem so to speak because blood can’t go where it’s needed. Contrast that with an electrical signal not getting to where it should be going in the way it should be going which controls the beat and you have an electrical problem.

To be told that to me begs the question. So what causes the electrical issue? That question doesn’t seem to have an answer according to the doctors I talked to. There is treatment but not a cause that is known. 

Atrial flutter is treated with the medications and shock treatment I talked about in the episode. That pretty much takes care of it and although it’s possible to recur, it’s not likely. I don’t have to change my diet or life style. I still have to take medications for awhile.

When I say I’m fine, I truly mean that. I can’t tell that this ever happened. I feel as healthy as I did before. 

Going to the hospital was stressful and most likely would be regardless of being autistic or not. As an autistic person my tolerance for uncertainty, unfamiliar surroundings, noise and lights, different foods, meeting new medical personnel twice per day, and more were lower than perhaps a neurotypical would have had. 

One thing I found annoying, and maybe it’s my generation, was that people in the hospital who are visiting aren’t sensitive to the fact that there are patients who need quiet and rest in order to get better. 

There were people laughing and talking so loud and it went on and on. I’ve experienced it before when visiting a friend in the hospital. That is truly disruptive to an autistic person’s peace of mind. Why is quiet expected in a library but not a hospital? A logical question…

I believe that being autistic helped me in this situation. As I said, some autistics, and I’m one, are very attuned to our bodies. I noticed the dizziness which I think someone else may have thought was nothing. I noticed my heart racing and knew it was odd and checked my watch to find out what it was. 

And now, no worries. I got the treatment I needed and I am doing well. More than fine. I feel good. 

I appreciate those of you who wrote to me with your concerns. I hope this gives a clearer picture to all of you that even when it feels scary, we can do what we need to do.

Reach out to me at info@theautisticwoman.com. You can support the show on Ko-Fi or PayPal. I appreciate hearing from all of you.

If you’re enjoying the podcast recommend it to your family and friends so they can learn what it’s like to be autistic.

Thank you for making this podcast possible.