Yesterday I Turned 7

This is the part of the story I leave out

Content Warning: This post includes topics of unaliving, self-harm, psychiatric care, medications, ADHD & autism diagnosis

Me showing Taj where I saw a rainbow the last time I was in the Badlands

Seven years ago yesterday I tried to unalive myself. December 14th is a holiday in my book. It’s an anniversary. A birthday. A celebration of life. Since then, I’ve referred to this day as the day I chose to stay alive. But in light of my recent autism diagnosis it feels important crucial to also acknowledge the first choice I made that morning — the choice to leave.

At age 24, approaching the end of 2016, I was a year and a half into a hellscape of a mental health crisis. The trigger was the loss of my Auntie Anne who unalived herself the summer of 2015. The unimaginable grief and trauma of losing her led me into a catatonic depression, my own ideation, an inpatient psychiatric hospitalization, daily 9am-3pm outpatient treatments, a bipolar diagnosis and a cocktail of psychiatric medications.

Over that year and a half my psychiatrist tried to find the right combination for my unbearable chest pain that could only be medically explained as anxiety (I used to say it was my heart breaking), depression, sleepless nights filled with obsessive detective work, self-harm ideation, grief and spells of hypomania that came with the start of anti-depressants.

We tried anxiety medications, anti-depressants, mood stabilizers and sleep medications. We had to stop the anti-depressants when they elevated me into hypomania. We tried lithium that required monthly blood tests 90 minutes away from home and made me ungodly thirsty all of the time. I couldn’t drive when I took the anxiety medication. The sleep meds put me out so hard I’d miss my alarms. My psychiatrist eventually even tried an antipsychotic. Nothing felt right. The more that time went on, the more it seemed as though everything was actually getting much much worse.

In December of 2016 I reached a new threshold of not okayness when I started to have a severe reaction to one of the medications, Seroquel, an antipsychotic that was prescribed to me after a break in that happened while I was house sitting for my mom. Seroquel can be used for schizophrenia and bipolar so I guess my psychiatrist thought we could try to hit two birds with one stone, addressing the mood stuff and the new paranoia/PTSD response at the same time. My nervous system did not like this medication. Something was not right. I remember complaining about it and my psychiatrist said we needed to just give it more time.

Three-ish months into that new medication, I started to develop these large dime-sized cysts on my face. It eventually became so painful that it was hard to wash my face and sometimes even smile. I felt like a monster when I looked in the mirror. My self-confidence was so low that I couldn’t advocate for myself, or even see that maybe there was a way that things could start to get better someday.

The contrast of professionals telling me that eventually I would improve while I felt like I was only getting worse — made me think I was a lost cause. I thought that it must just be me. I was not healthy enough to see any other way out. I remember the feeling of just wanting to sleep forever. Thinking maybe if I took enough medication I could wake up in different care a few days later and we could try again. Or, maybe, God would take me instead and I could try again in a different life.

Taj and I playing with light during golden hour in the Badlands

As painful as it is to recall all of this, it is sinking in differently following yesterday’s anniversary. My first December 14th as a diagnosed AuDHD individual. I think the lack of awareness about my neurodivergent brain is part of what led me to want to die that day. If someone had proposed the possibility to me sooner or interpreted my adverse reaction to Seroquel as a clue to explore neurodivergency as a possibility¹, maybe something could have been different. Maybe I would have felt some sliver of hope. Maybe I would have given myself grace, knowing why the medication wasn’t working.

We could have sifted through my differing support needs. We could have crafted a life that allowed me to process and grieve differently, away from the overstimulation of life. Off of the medication that was only making things worse.

I sometimes feel like I grasped onto the bipolar badge for dear life (at one point my Instagram bio & business card read “Bipolar Power”) as a way to make sense of the complicated way I have always experienced life. Clarity and answers are empowering — something to explain the ups and downs.

Now new layers and understandings are unfolding all of the time — my complex beautiful nervous system does not match expectations of a neurotypical society. The large dips in my mood over the years are due to autistic burnout, which can lead to depression. What I’d call hypomania in the past is actually better explained by big excitement and energy around my special interests. Dopamine rushes! Special interests that I have camouflaged into career paths to be more societally acceptable (a common way for women to engage in their special interests). A lifetime of masking and camouflaging is exhausting, no wonder I’ve been tired.

I’ve seen so much on TikTok (AutismTok) about how the average life expectancy for autistic people is somewhere between 36-39 years old. A large part of why this number is so low is due to the additional health conditions that autistic people face as well as the increased risk of unaliving themselves. Both folks who are diagnosed and undiagnosed experience great challenges of moving through a world that was not made for them to thrive in.

A quick google search backs up the shortened life expectancy with articles, studies and fairly new research. Dr. Claire Jack Ph. D states in her article 6 Reasons Autistic People Are At A Greater Risk For Suicide, “Autistic people—particularly those with level 1 autism—often try to “camouflage” their autism, finding ways to mask their symptoms in order to fit in with other people. Camouflaging is mentally burdensome and is linked to higher rates of mental illness and suicidality.^6”

When my Auntie Anne left us, I was already two decades into trying to fit into society. Exhausted by living, this major trauma pushed me beyond the edge of anything I could handle. I remember the first night in the inpatient hospital actually feeling a tremendous relief of being “away” from the world. My phone was locked up, I was in a sound proof room, I didn’t have to think about feeding myself and above all else…I didn’t have to pretend that I was okay to make other people more comfortable. I didn’t have language for it then. But now I can see that what I felt in that moment, was that I could take off the mask.

Taj taking a picture of me taking a picture of the sunset over the Badlands

I am at the very beginning of my unmasking journey. So far, in all honesty, it has been pretty painful. I’m coming to terms with a lifetime of people pleasing. Of fitting into work environments. Of learning how to play the part, and then be really fucking good at it. I am an expert at being bendable to your liking. Digestible for your consumption. A performance of a lifetime. “Jenna Knapp For The People” as one friend named it far before we knew what it was.

This commitment to unmasking is coming with its own identity crisis — who am I if I am not my mask? Who am I if I am okay with not being liked by everyone? How do I move through this world if I am actually going to put myself and my needs first for the first time?

All questions I am so grateful to have the chance to sit with. Questions I get to find the answers to. Answers I get to search for because I am alive today. And I am alive today, seven years old, because I made the decision to change my mind that morning.

Because I had angels tell me “there is so much more to live for.” Because I called Amanda for help, and she believed me. Because I forced myself to throw up. Because I stayed awake until the paramedics arrived.

Because I listened to that curiosity that maybe it could be autism. Because I pursued my assessment. Because I am committed to identifying my needs and then listening to them. Because I will create a life that feels so good.

With Love,

Jenna

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If you are also exploring your own neurodiversity I want you to know that you are not alone and you are incredible and beautiful and so worthy of self-exploration. I hope to share more along the way, but for now I wanted to share just a couple of resources that have been extremely helpful to me on my own personal journey —

• This episode of We Can Do Hard Things - #220 Why So Many Women Don’t Know They Are Autistic With Katerine May

• Katherine May’s book The Electricity Of Every Living Thing & her resource page

• Learning about Demand Avoidance & literally everything else Diverging Conversations Podcast talks about

• Dr. Neff’s Instagram account @neurodivergent_insights

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• Being able to drink eggnog that isn’t dairy free this holiday season

• The cinnamon, clove and wild orange essential oil combo I have bubbling in the diffusers lately

• The tree skirt, table runner and ornaments from my childhood that my mom passed down to me when we went through her Christmas boxes together last weekend

• The 12 hug a day challenge Taj and I have started (apparently you need 4 hugs a day for survival, 8 hugs for maintenance and 12 for growth)!

• Sharing the Dear Self With Love Planners with folks for a second year in a row!! And! looking forward to the new addition of Monthly Forecast Circles at the end of each month! (Want to help me celebrate my 7th birthday? Use code DEC14CELEBRATION to save 14% at checkout when you order your planner!)

• Knowing I get to spend the solstice off the grid out at my Dad’s next week :)

• The joy and permission of imperfection that improv quilting is teaching me and the progress I’m making on my first ever quilt top!

Left: first ever quilt top I’m aiming to complete Right: first week of improv quilting ever last Spring with one square a day

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Thank you so much for taking the time to read my big vulnerable share with you. I’m a bit nervous to start talking about my diagnosis publicly so the fact that you took the time to read my story today means the world. If it resonated with you or left you with more questions, I’d love to know. This is something deeply important to me and I’m open to talking more about it, especially if it can be helpful to even just one other person. If you think that someone else you know could relate, please feel free to forward it on. Or if you’re new here and have not yet subscribed but feel like you’d want to hear me talk about this topic more in the future, please do so! I’d love to have you here. Love you so much, you rock a lot <3

1. When I first began searching for an evaluation and nothing existed within my health insurance I turned to an online ADHD treatment platform desperate for answers. In the end it was not what I needed at all (they were just dishing out prescriptions without a lot of support) — but, I did have one life changing conversation with a psychiatrist from California on my intake call. I told her about my mental health history and my adverse reaction to Seroquel and she shared that in her practice, when someone has an adverse reaction like I explained, she considers autism because clearly your nervous system is processing things very differently.