Personal Stories, Bipolar, anxiety, Autism

Bipolar, anxiety & chronic conditions

Liz (who blogs at Liminal Nest) is Bipolar NOS, has PMDD, PTSD and an anxiety disorder. She also self identifies as autistic, and has multiple other chronic conditions.  

For Liz, Neurodiversity is about not hating her brain or blaming herself for not living up to adult standards. The level of support required and the challenges of managing work with multiple chronic conditions, means that Liz is no longer able to work. What struck me about Liz was her simple statement "all brains are good brains, some just need more support".

This is her story.

Do you see yourself as Neurodivergent

I do see myself as neurodivergent. Honestly, disability justice and the neurodivergent community have helped with my mental health at least as much as any therapy.

I have an assortment of diagnoses. Doctors have trouble fitting me in one neat box. I'm diagnosed with Bipolar NOS, PMDD, PTSD and some kind of anxiety disorder. I also am self diagnosed with Autism; doctors tend to think I'm “too social” to be Autistic. I have trouble taking the mask off on command.

I am queer and non-binary. In addition to neurodivergence, I also have chronic pain due to fibromyalgia and hypermobility. I also have a host of related co-morbid conditions, such as migraines, Dysautonomia, and mast cell activation syndrome (MCAS). I consider myself disabled.

What was it like growing up?

My parents are generally very supportive. They independently used ABA when I was a kid, because it was trendy in the 1980s. I don't blame them for this. They were looking for positive parenting techniques. I do think that ABA contributed to my masking. I'm still unpacking it.

Growing up, I was lucky enough to go to what I call a leftie weirdo school for middle and high school. It is based on the idea that schools should be foster learning, not focus so much on discipline. This environment allowed me to sort of accommodate my neurodivergence: I scheduled days with only one or two classes, which gave me time to study and (in retrospect) stim.

It was a school that encouraged non-conformity, so even though I was awkward and weird that was kind of expected. I still experienced bullying for things like “being queer” and “not understanding social scripts.” I think a lot of my Autistic traits were chalked up to being “gifted.”

Around my Junior year, I think I hit Autistic burnout and that's when my neurodivergence started to be more evident.

When were you diagnosed?

I was first diagnosed with depression my Junior year of high school.

After I attempted suicide in my freshman year of college, my parents took me to a specialist at Hopkins who diagnosed me with Bipolar NOS. I spent a lot of time in and out of the hospital. I'm what they call “treatment resistant”, which I now suspect is due to my recently diagnosed MCAS. It took a long time to find a medication cocktail that worked. Whenever it needs to be changed significantly, I tend to end up in and out of inpatient behavioural health for a while.

Did your diagnosis change things for you?

My Bipolar diagnosis has brought with it a lot of internalised ableism, stigma, and self doubt. “Am I actually happy, or am I having a hypomanic episode?” I have a host of baggage around what it might mean if I feel like cleaning in the middle of the night, or if I can't sleep regularly. Even though it's often chronic pain keeping me up, a part of me worries it's hypomania getting ready to upend my life.

Diagnosis and treatment of PTSD was actually very helpful, particularly EMDR. It was actually part of how I realised I'm Autistic. Part of EMDR therapy involves listing triggers. I realised I have a whole host of sensory triggers that predated my trauma, and had in fact been there my whole life. I started researching why, and so much of my life made sense when I researched Autism.

What do you struggle with, and what strategies do you use?

I struggle a lot with sensory overload and shutdowns. I also periodically deal with depressive episodes and hypomania.

I take medication for Bipolar. I've been in a lot of therapy. What really seems to help is routine and this thing unfortunately called a “sensory diet.” Basically when I can, I limit exposure to negative sensations. I don't force myself to wear the wrong texture or be around bright lights without sunglasses. I also make sure to include positive, soothing sensations, and give myself a lot of down time. This basically just puts me at a better baseline for coping with the unpredictable nature of life.

What is amazing about you?

I used to have the classic Gifted kid mood that the only amazing thing about me was “being smart.” I now think I'm amazing for my compassion, for being able to help put words to feelings and experiences, and for my animal skills. I've fostered and rescued cats and dogs, and I used to take my terrier in to nursing homes as a therapy dog.

I really enjoy animals because it's so relaxing to engage in non verbal communication. Plus, most non-human animals don't like eye contact either.

Do you associate any of the positives of who you are with being bipolar and sensory sensitive?

It's hard to separate what parts of my personality come from different diagnoses. I think my neurodivergent mix has definitely made me think outside the box, especially when I’m stable enough to do something constructive with that creativity.

Sensory sensitivity has given me a way to connect with other people. There's actually a whole range of people who hate labels, itchy fabric, and the hum of fluorescent lights.

It's hard for me to see bipolar in a positive light; I have a lot of internalised ableism. I mostly associate it with the hospital. It's something I’m working on, because I think we need positive models. I don't even know what seeing my bipolar in a good light would look like, but I'd like to find out.

What support do you need?

I actually need a lot of support. I need support with my routine, with grocery shopping, with driving, with getting to social activities as well as medical appointments, and with helping maintain a good sensory environment.

I need routine, a good psychiatrist (often the good ones taking new patients don't take insurance), and time to relax and be myself. It also helps to cultivate self awareness about when flares are starting, which therapy has helped with.

For sensory overload, I mostly need the freedom to reject certain clothes because of texture, and support in making my home environment a good sensory environment.

Are you employed?

I had to stop working due to disability. Previously, I've worked in a bookstore, as a dog sitter, as a tutor, and as a research assistant. I do better when I can work independently. Honestly, working was nice. It gave me something to say when people asked what I do for a living.

I never managed to work full time, and honestly my health is so much worse when I try to force myself to work on top of managing multiple chronic conditions.

Why do you think Neurodiversity is important?

Neurodiversity is important because it's what allowed me to stop hating my brain and blaming myself for not living up to able standards of adulthood. I honestly believe all brains are good brains, and that it's a revolutionary statement. Of course, some brains need more support.

What changes do you think are needed for Neurodiversity?

Society needs to spend more time listening to disabled people, and less time telling us what we need.

Employers would ideally offer more flexible positions such as telework, and more accommodations. Too often, people are penalised for speaking up about accessibility.

Educators would do well to offer multiple ways for students to show they understand material. Some of us struggle with essays but can do oral presentations. Others are the opposite. Also, if University educators could stop enacting classroom laptop bans, that would be great. Build in more accessibility in your classroom, not more barriers.

What should employers should consider for the neurodivergent?

Open offices are a sensory hellscape. So are bright overhead lights. I think everyone in an office could benefit from some kind of introvert room. Retail and service employers could be understanding if an employee couldn't help customers wearing strong fragrances, for example. Break rooms could be quiet and rejuvenating.

A lot of people also benefit from flexible work hours or telecommuting, because in my experience bipolar can make sleeping at night difficult.

Also, if you're open to hiring neurodivergent people: say that in your job ads.

How can employers benefit from hiring the neurodivergent?

We tend to think outside the box.  We also can offer unique perspectives on what neurodivergent people might want. Approximately one in five Users have a disability. That's a huge market for customers. It would make sense to hire employees who can relate.

If you are autistic, dyslexic, dyspraxic, bipolar, Tourettes, OCD, ADHD, ADD, or Neurodivergent in another way, and would like to share your story and thoughts then please contact me.

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