This morning, this study landed in my inbox.
Masking is Life: Experiences of Masking in Autistic and Nonautistic Adults
I don’t know how we learn this, but from a very early age, we are taught that what we choose to do as a career as adults forever defines who we are as people. People who choose to become doctors are considered better people than those who choose to become nurses, who are considered much better people than people who sweep the street. Somehow, we absorb the inference that the career you choose will define not only who you are, but how you are seen by society.
For the most part, our parents, in our western society, take this very seriously.
We look to our parents, as children, for approval and validation. Mostly, this is gained by how well we are doing at school, or in sport, or both. Rarely, if ever, is it determined by how we act as people. It’s the report card, or the staying out of trouble at school, that informs us, through the reaction of our parents, whether or not we are okay people.
Our intellect is constantly scrutinised. If we are clever enough, we can become doctors, lawyers, stock brokers, accountants, engineers, rocket scientists, surgeons, wealthy entrepreneurs. Our parents can be proud of us. Our parents can show the world that they did a good job as parents. The cycle continues from one generation to the next. Society has rules and a check box to make sure that we are all contributing to society in a way that can be quantified. Parents are judged on how well they bring up children to fall into the quantifiable line of “contributing to society”.
Basically, our whole society, and every social more within it, is built around how much money an individual brings in. Who we are as people is societally determined by how well we meet that matrix.
I have spent all my life trying to meet that matrix. Problem is, the rules keep changing and I can’t keep up.
It’s no longer good enough to have a career in one of the aforementioned careers that predetermines your status as a good person. You have to have a career of the one thing that you love doing, of the one thing that is you!
I have been searching my whole life to find that ONE thing that is me.
I’m 55 and still searching for that defining thing that I can finally hang my hat on, and through which I can finally feel like it is okay to exist.
Every day, I wake up wondering if today is that day.
When I was growing up, life, as it is for most people unless you are lucky enough for this not to happen, was hard. As a family, we were always in survival mode.
I was undiagnosed AuDHD, and living in an alcoholic household. We moved a lot (hello 34 houses to date). Yet, my brain, knowing all this information, refuses to accept how these things, and many others besides, might have interrupted any sense of self worth or self identity, or ability to work, frankly.
For one, I spent my entire life being the new girl. That takes a lot of energy for an undiagnosed autistic kid. Masking, though I did not know that at the time, became second nature just to fit in. Secondly, I was bright, but I could never concentrate long enough for that intellect to really shine. In my most recent psychiatric report it says that “Sarah got as far as her intellect could take her in adulthood but that broke down and she struggled to operate normally.”
Being diagnosed as AuDHD at 52 gave me a lot of understanding of why I feel so bereft of any identity, but it has also left me with a profound sense of loss. I am grieving the person, whoever she was, for that is utterly unknowable, that I didn’t get to be. I am grieving the lost possibility, the lost potential of becoming that person who would have that one thing that she loved that she could monetise and finally feel validated for existing, and of whom her parents could be proud. Because even in your fifties you still want your parents to be proud.
Essentially, to add to my list of ways I have at my disposal to constantly whip myself, lest I forget my place, I am now also ageist and ableist.
I am also a slave to what other people think of me.
Rejection Sensitivity Dysphoria (RSD) is an awful affliction that many people with ADHD live with. RSD means that we will turn ourselves into pretzels to avoid any perceived judgement from others. Our brains take in a lot of information, and for us that information is all aimed to determine if what we are doing is somehow going to cause people to judge us. As an autistic/ADHD child, this meant that I would often do things that I didn’t feel comfortable doing with disastrous consequences. It also meant that I would take cues from my peers in how I should act and behave. This behaviour, masking, has continued throughout my life. At almost every turn, masking has been a detriment to my well-being.
My first week at university, I changed degrees from a Bachelor of Science to teach biology (because I somehow managed to get an A in biology and it seemed like a good idea to follow that path), to a Bachelor of Science (physiotherapist), something in which I had never had an interest. I did this because I met a random girl during rag week who said that she was studying physiotherapy, and I thought to myself, she seems to know exactly what she wants to do and Physiotherapy seems like a cool thing to do, physiotherapy is a degree that is valued.
This is how masking works. It requires you to subvert yourself in the name of acceptance.
This change in path required me to take Physics and Chemistry, neither of which I studied at school because I was crap at science. Needless to say by the end of the year, I knew I was an abject failure.
RSD adds another, more intense layer to the need to mask.
The pain, and let me tell you, it is actual physical pain, of not being considered valuable or worthy by someone, or society, causes one of two things: we either run headlong into a direction that is neither good for us nor will in any way enhance our lives in order to be liked, or we retreat from society altogether to avoid doing something that will cause judgement. Masking causes you to not have any sense of self identity so you mimic others to fit in. I mimicked a complete stranger by changing my degree because my brain had extrapolated that this seemed like something others and society would like me to do.
Whilst at this university, now knowing I was a confirmed failure two years post school with nothing to show for it, I went to the onsite career counsellor who performed a number of career tests on me. Overwhelmingly, the test results showed that I was perfectly suited to becoming a nurse.
I baulked at this.
Just three years previously, I’d had a heated discussion with a friend called Natalie. She was a year older me, was incredibly bright, incredibly talented, incredibly beautiful. She was one of those annoying people who was fantastically academic, a brilliant artist, a great sports woman and was lusted after by every boy in school. Everyone was envious of her, and as a result people didn’t speak highly of her. I really liked her.
She asked me what I wanted to do when I left school. I said that I was considering nursing as a career. My mom had started her working life as a nurse and I felt a push to follow in her footsteps. Natalie’s mom, who was in her fifties, had just started studying nursing so was very enthusiastic to hear this. However, Natalie felt it was beneath me. I was bright, she said, why would I ever consider nursing, when I could easily become a doctor. Her disdain for my musings on career choices, and I am assuming for her mother’s, was palpable.
Hello RSD! This is how my brain interpreted this discussion: nursing as a career choice meant I would be less of a person, and less liked, than someone who became a doctor.
I dismissed all ideas of becoming a nurse. Instead, I would take a gap year to study at secretarial college to be closer to my boyfriend (since I had zero idea of what I wanted to do with my life). This did not go well and I did not pass, though administration would end up my career, and I hated it.
I followed that up with the decision to be a biology teacher which we now know lasted all of a week, followed by physiotherapy, which also lasted about a week since it became infinitely clear I had some kind of learning difficulty when it came to maths and science.
Thus, to receive personality test results that indicated nursing as a career, meant, to my brain, I was committing societal suicide. I would forever be judged as a lesser person.
This is all subconscious, you understand. I was not aware that this is how my brain worked.
To counter this perceived societal suicide, I opted to take a degree course in nursing. At the time (1988) public hospitals ran nursing colleges that awarded you with a Diploma in Nursing. However, you could also opt to study a Degree in Nursing through a university, which was more academic, less practical. But you would have a degree and in our society we know that having a degree is everything! It means you are educated!
Being educated means you are clearly a contributing member of society, and by contributing we mean with better earning potential, therefore you deserve the space you take up and the air you breathe!
I hated that course. It is where the unravelling of my life truly began. I struggled so much in that course. Academically, I failed. As we would thrust our hands into the cadavers, that the student doctors had cut up previous to us getting there because you know us lowly nursing students couldn’t be trusted to do it, to learn about the anatomy of the human body, I knew the degree was trying to elevate itself to doctor level without actually being given doctor level status. When, during a an exam, the examining doctor put a human heart into my hand asking me if it was a left or right sided heart, to try to trick me, I instinctively knew that the nursing degree meant shit. I was always going to be “just a nurse” no matter how I got there.
I also struggled with the other people on my course. Relationships have always been difficult for me, but on this course it became stratospherically so. At every turn I just felt like I didn’t belong. At one point, I was even sat down by my entire group and told to get over myself because I would opt to sit with someone else on a smaller table for meals rather than sit with the entire group. I didn’t know then that all I was doing was subconsciously managing my sensory and social overwhelm. But they interpreted it as me thinking I was above them. They felt rejected by me and opted to tell me so. I felt utterly ostracised.
One day, I was called into the office by the Matron in charge of the degree course, Matron Servatius. Severus Snape in Harry Potter immediately made me imagine her because their names sounded similar and she terrified me. She was a buxom matron, the proverbial image TV has given us over the years – large breasted, tall, foreboding, no nonsense. I knew being summoned by her wasn’t a good thing. I sat in the chair opposite her as she towered over me, telling me with gusto that I had failed my exams and my sups (supplementary exams aimed at giving you a second chance to pass), and that she had known from the very beginning that I was not degree material. She told me I just didn’t have it in me. She advised that it was probably best for all if I just left rather than continue down the path of humiliation that I was currently on. Weirdly, as she was prattling on, all I could think of was what was her heritage with a name like Servatius.
I knew, of course, what she really meant when she said that I wasn’t degree material – I wasn’t worthy as a person. The disdain literally dripped off her lips as she spoke to me.
I packed up my car and left.
But, here’s the kicker: I fucking LOVED nursing. I was good at it. I loved learning about the human body (on a scale I could understand and without having to put my hands into an actual dead person, though I did find that interesting) and I absolutely adored caring for people. I loved everything about nursing. Unconsciously and without being aware of society’s expectation of me, I had finally found my thing. I was so enthusiastic about my new-found love that I was thirsty for information. I loved it so much, I had dreams of TEACHING it. I was often ostracised by my peers for appearing to know too much. In truth, I was unaware that my glee at my new career would cause a feeling of threat to others. As only an autistic can, we come across as a know it all. Whilst I hated studying, I would often read up on things that interested me. Nursing was my new special interest and I just loved it. I was also a very good sharer of information (teaching), even when it isn’t wanted *sigh*.
Additionally, the transient nature of hospital nursing meant I could connect with people in short oh-so-manageable bursts which kept my social anxiety at bay (though I didn’t know at the time that was what I was suffering from). This enabled me to really connect with my patients very quickly.
Matron Servatius was throwing away someone who truly loved, and was good at, her job! My lack of academic prowess and the resulting judgement of not being worthy, was losing the hospital someone who was truly committed.
I drove home to Pietermaritzburg and told my mom I had left my degree course. She was disappointed, but accompanied me to the local hospital to ask if I could join the diploma course. 18 months of previous practical nursing did not count for shit as I had not passed the exams (of course). They would accept me so long as I agreed to start from the beginning. They also noted their disappointment and my future regret at not finishing the degree course.
I entered the Diploma course as one of the eldest students at the age of 21. I LOVED it. I sailed the practical exams (OSCEs) and consistently got the highest marks. I did struggle in the exams, but in the diploma course the academic content was scaled back to what we had to know to perform our job. The course was a lot more weighted on the practical side and I excelled at it. Relationships still proved a struggle, but I managed because I had my family and boyfriend close by. Nursing was what I lived for.
A particular highlight happened when one Saturday evening, I was at the Pietermaritzburg Royal Show and I heard someone scream Nurse Doxey! from across the way. I looked around and a young gentleman bounded up to me. He said he wanted to thank me for being such a good nurse to him. I remember him well. He had to have a rhinoplasty (operation on the nose) and he had a lot of bleeding and could not breathe. He responded by being a shit to everyone, but I instinctively knew he was just scared and would sit with him tending to him. He said he remembered starkly my kindness and was so happy to be able to finally say thank you. I tell you, I have never felt such a high as I did that night. I felt seen, and valued. I felt like I was making a difference.
I was also one of the only ones who loved geriatric nursing and would thrive on my rotation of those wards. I sat many nights holding the hands of men and women, who had lived long and, to me, interesting lives, as they left this earthly realm. I felt so grateful and honoured that I could be there for them so that they did not die alone. It is a part of my life that is very special to me.
It wouldn’t last. A spinal injury, which happened at work, heartbreakingly prevented me from finishing that course, or ever becoming a nurse.
I have been devoid of any sense of self, or sense of worth, ever since.
This is what happens when we are taught that to have any value as a person, we have to do something that we love, that also contributes financially to a society, and how much you contribute puts you further up the ladder of value.
In recent months, I have realised we have it all wrong in our society. Does what career we choose really, truly define who we are? Why am I, as a stay at home mom, looking after my autistic son, with my own neurodivergence and chronic illness, considered less of a person, societally speaking, than someone with a degree and a career? I mean, some of the shittiest people I know live in the higher echelons of society as doctors, lawyers, entrepreneurs etc. Is not a measure of a person more about their behaviour and what they contribute to those around them? Is it not about being, at the very least, a kind person who cares about her fellow kin?
I grapple every day with these kinds of unending questions.
I, and so many other people, do this all in the name of avoiding rejection, and reaching for that elusive feeling of worthiness. Those of us who are AuDHD, do this all the while not fully understanding the constantly changing, ever fluid rules of society.
It is insane.
In truth, owing to AuDHD with accompanying RSD and now with ME/CFS, I have no career I have earned very little money as an adult. I also have no one thing that I am good at to monetise.
This is not uncommon. 80% autistics are unemployed. Restrictive behaviours, sensory overload and social anxiety make traditional work life almost impossible. Personally, I have never been employed in any one role for longer than 9 months. None of my previous employers are likely to give me a glowing reference either.
Like everyone that ever existed, I have just done the best I could with my life. My neurodivergent path coupled with my not to be discounted childhood trauma, took me to working when I can, getting married, and rearing children to be kind humans. I have, I think, achieved that. Yet, still I feel the pinch of not being good enough.
When I hear or read of someone’s success (which is always linked to what they do for a career), the sense of failure I feel is profound and physically painful. This is hard to admit, but I can’t applaud someone else’s success because it opens a wound in me so deep, so painful, that I have no choice to but to look away. This isn’t on them, this is entirely on me. Perhaps, though, it is more accurate to say it is on society?
Now, with 24/7, 365 days a year visuals of what success looks like, that RSD is even more exacerbated.
Being an ordinary, dare I say it, even mediocre person is just not good enough. Those people, me, don’t fit the mould of being contributory to the coffers of society.
Not being able to fit into society’s expectations whilst not fully understanding those expectations is also excruciating.
I rail against this, of course. In moments of lucidity and strength of mind, I yell into the ether fuck you world! But, mostly, I just stay in my hole, hating myself even more for doing so.
That in itself is ableist.
I have a neurodivergent brain. This means my amygdala is larger than most peoples’. My lizard brain, the part that controls fear, is uncontrollably on high alert. I am overtly susceptible to the nuances of society driven by a sense I am not the same as everyone else but not understanding why, but knowing I have to somehow try to fit in. I have masked to fit in all my life. The problem with masking is that you never ever really get to know who you actually are. You are devoid of any sense of self. You exist on a quicksand bed of existence that threatens to swallow you whole unless you conform, but try as you might to do so, you never quite make it.
My brain lost its ability to mask somewhere around late 2016. Menopause is suspected to be the cause of that (there are some studies going on into this). Life became inordinately more difficult for me to manage and I didn’t know why. All I knew is that any small semblance of deserving the air that I breathe left me.
This led to my AuDHD diagnosis in 2020.
I have spent the past 31 years desperate to feel, just once, the contentment, driven by that invisible sense of societal worth, that I felt when I was nursing.
I have bounced around from innumerable (unfinished) degrees, to creative endeavours, all in a quest to find the one thing that I can become a master at, and earn an income from, to finally, finally, have that sense of acceptance and validation.
Here is the truth: it’s never going to happen.
I am neurodivergent, and now have a chronic illness.
The whole world is ableist and continues to send the message that I not worthy unless I am showing that I am making an effort to push through all that I have inside of me and somehow emerge a valued, celebrated and earning member of society. That “pushing through”, though, has to be proven through a further set of rules deemed to be acceptable to society.
We call this the model of the deserving poor. During the victorian times, poor people had to be deemed good people, the rules of which were set down by the rich, in order to deserve the handout they may be given.
Society still does this today. You are disabled, but you need to show us that you are doing all you can to rise above that disability to become “normal” (aka to earn money to keep the machine going). Only then will you get the help you need.
Those that didn’t meet those rules, didn’t get the handout. The result is that people with disabilities, or low income, or marginalised sects of society, spend their lives trying to prove their worth to get the help they deserve.
My brain has taken that totally on board. That whole individualistic American dream lie that we can overcome anything that has become such a part of our vernacular, is emblazoned on my brain and it will not let me go.
Please, for the love of all that is good, LET ME GO!
It is a lie.
I am not special, I have no particular talent. I am a neurodivergent, chronically ill human, just past the middle of her expected life expectancy, trying to do her best in a world that demands she be so much more. I have literally become invisible to avoid the weight of the expectation that bares down on me.
I can no longer pretend. I simply cannot. I am EXHAUSTED trying to meet the ever-changing goal that society dictates of me. It’s unattainable even for someone who isn’t neurodivergent. For me, personally, it is impossible.
I have tried, believe me, and I cannot do it.
I am not artistic, or sporty, or academic. I can barely take care of myself. I have certainly not been able to meet the demand that I forge a career, no matter how hard I have tried.
I am just trying to survive in a world loves loves loves to remind us that that it is full of doom and gloom and constantly judges what everyone does and has something to say about EVERYTHING. Fuck, it is hard.
So, I will be over here, in my safe home, being a hermit, trying to do the best that I can do with what life has dealt me, for what little time I may have left on this earth. I will also try to release myself from the absurd expectations that weigh so heavily on me, and allow myself to be content with where I am at in my life right now, with its many foibles, affording me small pockets to do the many things that I enjoy, none of which make me stand out from the crowd as exceptional, not earning any money, but loving so hard the people in my life.
I think that is enough. I think I am enough.
I am enough.
As are you.