Someone asked me recently if having a diagnosis now meant I was ‘all good’ and ‘back to being okay’. This highlighted to me that in my blogs so far, I have only really spoken about the past and not shared my now- my raw emotions. Those not yet reflected on and worked through. I am unsure whether that is because even now, many times, I don’t know how I feel, or more likely because it is scary to be vulnerable and open up to the world. Either way, I guess I just find it easier to bury my feelings and stay busy as that is the way I have always done things. However, I realised that I need to confront my now and lay it open for all to see. Having a diagnosis has made me more aware for sure, but it hasn’t magically fixed all my problems. So no, I’m not back to being okay. In fact, I'm not sure I even know what okay is!
Although everyone experiences highs and lows and good and bad times, I feel that these are even more extreme for autistic individuals. I think it’s fair to say most thoughts, emotions and sensations are generally intensified in neurodivergent individuals whilst being completely confusing. Think of it as a volume toggle. For non-autistic individuals, your volume may be within the lower range. (Yes, I accept there will be a range within which the volume increases and decreases.) But crank this up to full blast; full-on blasting, painfully loud, all-consuming emotions, thoughts and sensory stimuli – welcome to my world. Please don’t misunderstand me. I am not implying that neurotypical individuals don’t struggle with extremes, it is just that from my experience of my peers, they seem to be able to express their thoughts and emotions unlike myself who previously couldn’t even identify them. I mean, imagine not knowing whether the churning in your stomach is hunger or anxiety. That is the extreme of what I am trying to describe, and I speak more about this previously in my fifth blog (click here to read).
In all honesty, looking back, I can admit that I remember nights feeling so helpless and not knowing what to do with myself. Frequently, I would turn to my phone, and do what I always did, scroll up and down my contact list over and over hoping someone’s name would appear. An individual whom I could reach out to, who could understand or at least listen. I don’t know what I expected as every night ended in the same, nothing. I would then turn to my locked notes start writing. At first, it was just odd phrases but soon it became customary for tears to stream down my face and a flood of words to drown the page.
Recently, one night I couldn’t sleep so I started reading through the Notes app on my phone and I came across a locked note. It was a list of my symptoms and a list of potentially related diagnoses I had been collected for several years before I received my diagnosis. I have briefly spoken about the mental health challenges I faced before I was diagnosed in a prior blog but reading this list again made me realise the extent of my feeling inadequate, isolated and hopeless. I think I am quite good at suppressing experiences and thoughts I would rather not relive, so I haven’t really revisited how I felt at my lowest point. I trivialise my struggles in my own head, I guess as a coping strategy to help me move on from that chapter maybe to avoid dwelling on the lows and the loneliness. Further evidence of my ability to compartmentalise and file away feelings and experiences to a place where I don’t have to confront and manage them.
Seeing this reality of how I felt back then actually written down, was a wake-up call. I liked to pretend to others that I was in control and that I always felt great as I thought this was the expected response to the ‘How are you doing?’ question. I tried so hard to mask and overcompensate putting up this persona of being bright-eyed and bushy-tailed, bubbly and loud, when in reality I would go home and cry behind my bathroom door, covering my mouth so no one would hear. The deception was in full flow for family, friends and distant acquaintances alike. It was exhausting. Reading this note recently made me realise how far from ‘okay’ I was back then. In a way, I had been lying to myself - maybe because I didn’t want to revisit and confront my emotions. At the time, I understand, it was easier to pretend and mask than to face the fact that I was not okay. I have never really told anyone or shared how I felt in my darkest times. I didn’t feel that I could trust anyone. I was scared others would judge me. But now, I feel it is important to be open and honest with myself about what went on inside back then.
Finally, after years of giving everyone the misinterpretation that I am and always have been fine has made me realise that maybe I need to be vulnerable and maybe I need to stop trying so hard to mask. Maybe someone could even help me.
Whilst I have become more aware of my feelings and emotions and developed coping strategies, I still have meltdowns and anxiety attacks. A few months after my diagnosis, I had a panic attack at school. However, for the first time, I actually reached out for help. I visited my school counsellor and then decided it would be best to take a few days off. During my time at home, I tried to rest in a low-stimuli environment and reflect. I realised that I put excessive pressure on myself to live up to my own expectations of conforming to social norms. When in reality I needed to take it easy and slow down a little. I needed to accept myself and just be kinder to me. Ever since my epiphany, I have been trying to follow this advice but I'm still a work in progress.
Putting it out there may seem scary and leaves us vulnerable but the alternative is exhausting and a very lonely journey. Vulnerability can open us up to new possibilities, new connections and new friendships. Who knows who will read this and feel like they are no longer alone. Maybe I can help someone, so they don’t feel desperate and helpless.
So maybe I actually am okay after all? As I have learned that it is okay to not ‘fit in’. It is okay to be different and stand out from the crowd. It is okay to feel sad sometimes and confused, maybe even lost. It is okay to say ‘no’ and it is more than okay to put yourself first. In fact, we must make our mental health and wellbeing a priority. If we can’t, then how will anyone else. Reach out for help and direction. Learn that self-acceptance is the key. We must all learn to stand tall and proud, to hold our heads up high and state ‘This is ME’.
Thanks for reading,
Nidhi :)
References
Cover image: Eswaran, V., 2021. Don't underestimate the Power of Silence. Vijay Eswaran's Digital Home. Available at: https://www.vijayeswaran.com/insights/dont-underestimate-the-power-of-silence-vijay-eswaran/ [Accessed February 4, 2022].
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