On Self-Disclosure During Medical Treatment

Over the past few weeks, I have had multiple encounters that have indicated that somehow my choice whether to disclose my neurology in some way has affected these such interactions. Here is one of them; the rest will follow in other posts. 

At a hospital, during a life-threatening emergent situation, my treating doctor felt it was appropriate to berate me for a half an hour regarding two complaints regarding my care under her supervision. Approaching shutdown, I asked for a break in our discussion. She did not stop, nor did the patient advocate indicate that she should. The outcome was a full-on meltdown where I went non-verbal, rocking, fists-clenched and leaving nail indents in my palms. The doctor continued insisting I needed to make choices. Verbally. I stutter-shouted “I am autistic!” At which time, she approached me, began to softly stroke my shoulder. I again shouted, “DO NOT TOUCH ME!”

As I was using items in my recovery bag, including my Willebrand brush, essential oils and a picture of my family to ground myself, I could hear her talking to my friend. “If I had only known she was autistic, I would have assigned her a sitter. I would have approached her care with more…” More what? Compassion? Attention to detail? Less berating? 

(Please note: it is in my medical records at that hospital (where I received ALL of my medical care for THREE years while living in that area) that I’m diagnosed with Autism Spectrum Disorder- it’s second on the list of my history. And, I told the nurse upon intake that I was taking one of my medications to help me with “transitional depression and anxiety associated with my autism.” I know that's what I said, word for freakin’ word. Because that is the phrase I worked really hard to come up with to explain why I’m on that medication. I say it exactly the same way. Every. Single. Time.)

Additionally, I heard every word of their sidebar conversation. I know my sweet, bedside friend initiated the conversation and moved the doctor further and further away from my bed purposely. She was getting the doctor off my back the best way she could. But during my regulation and recovery period, I heard EVERY word. I heard the doctor talking about her experience with autism. I heard her apologize that she “didn’t know.” I heard it all. I remember it all, considering I was still very unwell. 

But here’s my point: in what situation is it appropriate to base a person’s medical care on their self-disclosure of a neuro-development disorder that has nothing to do with the medical emergency? My autism had nothing to do with the fact that my blood pressure had been in the 80’s/50’s with an elevated heart rate of 120+ for most of that day. Nor did it have an effect on the treatment plan for my anemia that was approaching the stage of oxygen deprivation of my organs although the hemorrhaging had stopped. 

Is this to say that every time I’m receiving medical care from this point on, every medical professional (nurse, CNA, doctor, orderly…) to enter my presence, I need to introduce myself and follow that with “I’m autistic?” 

I mean, I’m not shy about my diagnosis. I’m not ashamed of it and I do share it when I’m being triaged. Or, I bring it up when I’m struggling to understand something. Or, when the doctor asks if there is anything that could further affect the treatment. But, this specialist that came in the ER room that day was one member of a parade of care providers in and out. Especially with me going in and out of being fully conscious.  

It all comes down to knowledge and compassion. Or lack of it. I hope that the rise of television shows that are including “outed” autistic people will help many of the neuro-typical population to understand and be educated on autism. Because this type of ignorance not only affected my treatment and mental state that night. It traumatized me while I was going through a medical trauma. And continues to with that doctor’s judgement has me questioning every interaction I have with people in the medical field since then. 

Because…one extreme adverse outcome can put my brain in a place to feel unsafe with the people whose job it is to help me be healthy. 

So, for now, I suppose… “Hi. Nice to meet you. I’m autistic,” is where I’m at when I’m being seen for a primary care appointment to diagnose a UTI or in the emergency room to be evaluated for a potential blood clot. 

But my challenge to you, dear reader…fill in the word “autistic” above with the following words: sad, obsessed with Pokémon, scared of cats, narcissistic, sarcastic, shy, fun, witty…you get the point, I think. Do those affect a person’s medical care? If so, we need to have a further conversation about this. 

Which hospital is going to be the first to have a neuro-diversity panel conversation with me? 

On Moving

Alright. So, you know that feeling when you travel somewhere, perhaps to a different country, and it feels like you've been transplanted to another world? Nothing...NO-TH-ING makes sense. The words you are surrounded by and the customs of the people are completely foreign. Complex.

Maybe you bought a map and the travel guide for that particular place. You have done your research, found the best ways to interact with the townspeople, even marked the highest priorities on your sight seeing list.

Then, maybe your flight was delayed. And, when you arrived it was raining. But, you didn't pack an umbrella. You have no idea how to say 'umbrella' in the native tongue, so you keep walking around from store to store playing a game of charades with the clerks who look at you like you have five monkeys dancing on top of your head. They have absolutely no idea what you're asking for. You have no idea how to speak the words they might recognize. Defeated, you walk to your hotel in the downpour. You collapse in a heap on your bed, ready for tomorrow to bring a fresh start.

But, it does not. Your entire vacation continues on this trajectory for about three months. You awkwardly walk about stumbling through every day trying to communicate with the people around you with no avail. Everything. Every single moment is...hard. At every turn, you have to learn something that you knew on your own previous 'planet.'

This, my friends, has been my experience with moving every few years for a majority of my life. As a child and for the past eleven years as a military spouse. We have lived in five states, six homes, added a sweet son and said goodbye to our sweet fur-baby along the way. I have shared countless hours with nine primary care doctors, probably over thirty specialists, seven dentists. (Ahem: confession: I have had one too many bad experiences with new dentists that I'm over two years in our current location without having a dental exam. I'm taking the baby steps to get there though.)

Now, consider the places you go each and every week: church, the grocery store, school, restaurants, the dry cleaner. What happens if they've changed the layout of your favorite grocery store? You walk around lost for a few weeks, muttering to yourself as you hunt for your necessities. What about the local barista that knows your name and your favorite drink and has it ready for you when you get to the front of the line? Are you 'Norm' at the watering hole down the street...does everyone there know your name?

What happens when all of these things change all at once? Universes collide. Moving is one of the most stressful things that a person can endure in their life; if I recall correctly from my Intro to Psych classes it's in the Top Three. And, that's for the neurotypicals. What about for those on the spectrum who need their lives to be orderly and make sense just for the wheels to keep from falling off?

For me? It looks like regression: I struggle to not hermit myself inside the safety of home, clinging to the very things that I have moved into this foreign home. I walk around with earbuds in my ears at probably ten grocery stores until I find ONE that will work. Then, I have to deliberate between which one was the LEAST offending. And then, at what time to shop there. Then...it keeps on going. The process to choose a grocery store feels insurmountable. And just like that, I draw inward. I pull myself into a cozy little cocoon before I feel myself slip too far away.

Someone once told me that I chose this life. I chose to marry a man whose life included regular moving. Yes, I did choose to marry him- my best friend and the man that challenged me and encourages me to be a better Sara, each and every day. What I did not choose was to find out that my first giant move away from my hometown as an adult sucked the life out of me. Like sucker punched me right after getting married, buying a house and moving- I had the stress hat trick!

But here's the thing; I did not choose for my brain to be designed in such a way that would feel like the world around me was foreign and crumbling. For the longest time, I analyzed and prayed and attempted to "fix" myself from all of this.

This last move, two years ago, I felt the collision. But this time, with the increased knowledge I had gained with my diagnosis, I was able to know why this was happening. I wasn't able to stop it from down pouring for what felt like three months (this is figurative!) but I was better equipped to communicate what I was feeling, what I might need and what types of things I could do to keep myself from going full-on cocoon.

And yet, as I consider the very words I just wrote, I had the vision of a beautiful butterfly emerging from the chrysalis. Maybe this is what this very process of moving has been giving me. Because had I not had so many difficult times before, how would I know that I made progress on the most recent challenge?

On the Stigma of Medication

There was a time years ago that I believed that taking medication was a sign of weakness. That it proved that there was something "wrong" with me. That is was a tangible way to prove my brokenness to the world- especially when I had to go to the pharmacy and they would discuss my medications with other patients too close. At those times, it was a head-hanging, don't-make-eye-contact type of moment. I would think "Shhhhhhsh. They'll all hear you."

I battled with my sleep doctor for almost a year over the fact that I did not want to take medications to control my sleep disorder. Even after Brent and I discussed with her my "taking care of the babies" years ago when Brent would wake me and bring me back to bed. Even when we explained the multiple incidents of me punching and kicking Brent as I tried to escape dangers in my dreams. I tried melatonin- but it didn't help completely. She explained the best way to keep me in bed, to keep myself and my husband safe while I was sleeping, was to take a particular medication that is proven to help this disorder. I said "no" and continued to do so after multiple sleep studies and anecdotal evidence that supported the diagnosis of REM Behavior Disorder.

Easiest way to explain this: people with this sleep disorder act out what they are dreaming. Most people's bodies go into a state of paralysis during REM sleep- it's a built in protection that keep our bodies from doing what are brains are dreaming about. A fellow REM Sleep Behavior Disorder sufferer went through the similar process of denial, danger, and eventual realization that he was not going to get better until he saw a sleep doctor, got himself healthy and took his meds. You can check out Mike Birbiglia's journey in his independent film Sleepwalk with Me or on his stand up album with the same title. Mike says it best:

"It was like one of those stories where people wake up after a hard night of drinking...but it was in my living room" [where he had crushed his TeeVo after climbing onto the furniture to celebrate his win in the Dustbuster Olympics- truth.]

Mike goes on to say "This was the first time I remember thinking 'well this seems dangerous, maybe I should see a doctor. And then I thought, maybe I'll eat dinner. I went with dinner. [...] Sleep walking is a terrifying experience because it's your body making a decision that is different from your conscious mind. Your conscious mind is like "we're going to rest for a few hours" and your body is like "let's go skiing!" I skipped ahead to a chapter on sleep disorders. And I find a disorder called REM Behavior Disorder where people have a dopamine deficiency- that's the chemical that's released in your brain into your body when you sleep so that you don't do what is in your brain. [...] I saw a doctor who specializes in sleep disorders. So now, when I go to bed at night, I take medication..."

So what happened to me this weekend? After a few odd circumstances that were out of the norm, I came into the long weekend without my medication. I made phone calls, went to urgent care, spoke to the on-call nurse. I was told that it was not an emergent need and that unless I was in danger of hurting myself or others, that it was not necessary to go to the ER. I felt beat up- this is the first time in my life of taking medication to mitigate my sleep disorder symptoms that I had ever dropped the ball on making sure that I had my medications. And, I was beginning to feel as though I was being treated by some of the medical staff as a junkie. 

My literal brain went into that place of, "keep it together, Sara" and I started experiencing symptoms of my withdrawal from my meds on Sunday afternoon, in addition to not having good sleep for three nights. The withdrawals from this medication are legit and awful. I was clammy and had the shakes for two days and counting. My head was pounding. My sensitivities to light and sound were amplified. I quarantined myself to my bedroom to keep from showing how badly this was affecting me to my sweet son. He didn't need to see me at my worst. In moments that I couldn't control my body's jitters and shakes and muscle spasms. 

But then, last night, he asked. And I could not withhold information from him. So, I told Jackson that Mama was having a hard time without my medications. That it is called withdrawal. And that it would not go away until I had my medication in my system. At the doctor's office and pharmacy multiple times, Jackson stated "Mommy's going through withdrawals from her medication." And, I winced every time. That shock and embarrassment of they're going to know ate away at me. But why?  I hadn't done anything wrong. All I did was miscount my meds before a holiday weekend at a time that I believed I had more refills because for the past two years, I was able to have three refills per paper prescription. So, the routine got me. I wasn't aware that my prescription for traveling was only for one month. I also had bought a pill organizer so I would be able to make sure I knew if I took my meds or not. But, all of this caused a snowball affect that created a nightmare of an experience. 

Yes, it is difficult to make the decision to take medications that cause my central nervous system to do what it should naturally do on its own. It's anguishing to know that I cannot respond to my son's cries for his parents in the middle of the night once my meds are onboard. It is something that I had to come to terms with as I grappled with the decision about future babies for our family- how would we handle me needing to take this medicine and needing to get up in the middle of the night to take care of a newborn? So, yes, it is a decision I make everyday. One that is not made lightly or on a whim. I have matured enough to know that for me to be the best me, the one that will fulfill all of my God-given abilities here on earth, I need to be well-rested. I need to not be injured because I jumped out of our bed to catch my purse as it floated away in the ocean. (Yup. That was a thing...) I need to be able to go to sleep knowing that I'm not medicating myself to be numb or to not feel or anything else. I'm doing it because it is what my body needs to be healthy. And safe. And at the end of the day, it is the best decision for me. And my family. 

I saw the other day on The Mighty an article about a fellow autism mom and autistic woman who felt compelled to show that admitting we need help- physically and mentally to get through this is not a weakness, but a strength. This has tugged at my heart for days considering the ordeal that I have gone through with my own medications over the past five days. So, I urge you to check out Erin Jones' blog Mutha Lovin' Autism and her story because she has inspired me to post how I am #medicatedandmighty.

*Note: Shared with Jackson's permission after reading him the post.