Voice of an Autistic Woman: From Injury to MSK

Sustaining an injury at home was the last thing I anticipated, as this space has always represented safety and comfort for me. It has been my sanctuary, a personal refuge where I retreat when the world outside becomes a little too loud, too bright, and a tad chaotic. This home has been a haven, a place where I could relax and recharge, surrounded by familiar sights, comforts, and sounds that bring me peace. However, everything changed when my husband and I decided to start an extension project intended to enhance both our living space and our workplace. What was once a warm and cozy home has now morphed into a chaotic experiment lab, filled with unfinished and dangerous work, abandoned tools, and materials left by builders who have transformed our sanctuary into a dumping ground.

The construction has turned our once peaceful environment into a whirlwind of disruption and neglect. Dust and debris fill the air, hazards are everywhere, and the familiar layout of our home has been altered, making navigation difficult. With endless delays, it seems as though nowhere is truly safe anymore. Access to basic amenities has been severely compromised; we are left without essentials like water, electricity, or heating needed for our daily life. Simple tasks that were once second nature have now become challenging obstacles. The lack of these vital resources has increased the stress of an already overwhelming situation.

The builders have taken away my sanctuary, a personal refuge where I retreat, unwind, and recharge when the outside world becomes too chaotic for me.

Despite my longstanding history of being cautious and careful, this time, it appears that no level of meticulous planning or attention to detail could prevent the unfortunate accidents that led to my injury. I feel a deep sense of shame and embarrassment, as if I have let myself down by repeatedly falling. Each stumble serves as a reminder of the instability of our current living conditions, and I continually replay the events in my mind, questioning if there was something, anything, I could have done differently to avoid these falls.

Reliving the accidents in my mind has become exhausting. I find myself analysing every hazard. Was there a different way to walk up those makeshift steps onto the jagged concrete? Was there a secret to walking on the uneven floors that caused my fall? Or maybe there was a trick to navigate the clutter from the unfinished construction? These questions swirl in my mind like a storm, and I struggle with feelings of inadequacy and helplessness. I long for the days when my home felt secure and welcoming, a place where I could move freely without the fear of injury lurking around every corner. The chaos of the construction project has disrupted not only our physical space but also my mental wellbeing, leaving me yearning for the peace that once defined my beloved home.

Is It Healthcare or an Example of Undermining an Autistic Woman's Voice?

Firstly, I want to express the deep sense of distress and isolation I experienced when I sought help from my General Practitioner (GP) and was met with a lack of acknowledgment. It was disheartening to realise that when I desperately needed care and support, I was essentially invisible to the very professionals who are supposed to help me. The thought of making yet another trip to Accident & Emergency (A&E) filled me with dread, especially considering how the hospital is often overwhelmed with patients requiring urgent attention. I didn't want to add to the chaos or be perceived as an inconvenience to the staff who are already stretched thin, dealing with numerous critical cases, but I was told by the GP to go to A&E. After enduring another lengthy visit at A&E, I was instructed to return to my GP.

Every time I attended an appointment at the GP's office, I was left with the impression that I was seen as a burden rather than a patient in need of care. This experience made me question my own worthiness of medical attention. I began to struggle with the idea that perhaps I was somehow at fault for needing help. It was perplexing and painful to realise that I had transformed from a healthy person who rarely visited the GP to becoming a nuisance. I couldn't help but wonder what I had done wrong to deserve such a perception. How can having a formal autism diagnosis affect the treatments I receive so significantly? It's just a label and doesn't define all of who I am.

It was perplexing and painful to realise that I had transformed from a healthy person who rarely visited the doctor to becoming a nuisance. What had I done wrong to deserve such a perception?

In my efforts to navigate this difficult period, I initially attempted to self-help. I explored various methods and remedies, hoping to alleviate my injury without bothering anyone. I never anticipated to find myself in a situation where I needed to reach out for professional help. I wasn't looking for a miraculous solution or a magic elixir to instantly resolve my issues; rather, I was simply seeking acknowledgment and support for my injury. I had endured the pain, discomfort, and limitations on my movements for as long as possible, hoping that time, would bring improvement. However, the reality was that my efforts to manage the situation on my own were proving ineffective, and the pain was becoming increasingly difficult to endure.

When I eventually sought outside help, I was met with a flood of indifference and insensitive remarks that seemed unrelated to my symptoms, leaving me deeply disappointed. It was as if I had been thrown into a bewildering healthcare world without a map. Usually, I take pride in my ability to quickly process information and absorb complex knowledge, but something had changed. I was also shocked by the insensitive language used by medical professionals, as if they had a manual dedicated to making someone feel worse. Referring to my autistic identity as a mental health condition is profoundly distressing, or saying I have autism as if it's a contagious disease. The sheer volume of inappropriate language and the speed at which it was delivered left me feeling even more confused and anxious about my injury. I longed for clear communication and a compassionate approach to help me better understand my situation, rather than feeling lost in a sea of discriminatory terms and unfair treatments.

The Quest for Alternatives

The GP appointments left me feeling increasingly hopeless and disheartened as I searched for answers to the distressing and nauseating reactions I had to pain medications. Despite my hopes for a thorough examination and a personalised treatment plan, I walked away without the clarity I desperately needed. My symptoms remained unresolved, and the discomfort persisted, leaving me in a state of uncertainty about how to effectively manage my condition.

I articulated my concerns regarding the side effects of both prescribed and over-the-counter pain medications. I explained the nausea they caused, which not only made it difficult to function daily but also negatively impacting my overall wellbeing. Unfortunately, instead of receiving a comprehensive evaluation or a discussion about alternative pain management strategies, I encountered a lack of engagement, which only intensified my sense of helplessness.

Describing my autistic identity as a mental health condition is profoundly distressing, or suggesting I have autism as if it's a contagious disease.

Alongside the unresolved issues surrounding my medication, I was handed a stack of generic physiotherapy exercises that appeared ill-suited to my specific injuries. Instead of offering relief, these exercises aggravated my condition, resulting in more discomfort and helplessness. It became clear that the one-size-fits-all method failed to account for the intricacies of my injuries or the unique challenges I encountered during my recovery.

The gap between my expectations and the reality of my GP visits led me to doubt whether a personalised approach to my healthcare is possible. I hoped for a collaborative discussion where my input would be valued, allowing me to explore different treatment options, including adjustments to my medication or a more tailored exercise regimen that would take into account my specific limitations and needs.

Overall, the experience highlighted the importance of active listening and individualised care within the healthcare system. After each appointment, I not only lacked answers but also with a sense of urgency to find a practitioner who would take my concerns seriously and work with me to develop a more holistic and effective treatment plan. The path to managing my pain and symptoms seemed more daunting than ever, as I navigated the complexities of my condition without the support I had anticipated.

A Glimpse of Hope on the MSK Path

During another undignified and painful session with the physiotherapist at the GP's office, I found myself struggling with a deep sense of despair and frustration. The physical discomfort I endured during these sessions was intensified by the emotional toll they took on me. I had completely lost faith in the treatment I was receiving, and in a moment of desperation, I mustered the courage to request a referral to someone more experienced. This plea for help, however, was met with resistance from the physiotherapist, who seemed unwilling to acknowledge my pain, distress or my need for a change in approach.

Thankfully, my husband stepped in as my advocate during this challenging time. He recognised the toll that the sessions were taking on my wellbeing and insisted that I be seen by a different physiotherapist—someone who could offer a fresh perspective, more experienced, and an actual compassionate approach. I felt a wave of relief wash over me knowing that I had his support, yet I also experienced a deep sense of shame for needing someone else to speak on my behalf. The once confident person I used to be seemed like a distant memory, overshadowed by the weight of my injury, unjust treatments, and the prolonged struggle I had been enduring. I had lost my voice, my proud autistic woman's voice that advocated for women in tech and women owning their own businesses, and I couldn’t help but ask myself, "Who have I become?". The need for my husband to advocate for me highlighted my vulnerability and the profound impact this injury had on my self-esteem and sense of agency.

As I sat in the lifeless and messy room, filled with the smell of odours and the sounds of distant chatter, I anxiously awaited any sign of hope regarding a referral. However, when there was finally a glimpse of a potential referral, the physiotherapist failed to provide us with any specifics—who I would be referred to, where the appointment would take place, when it would happen, or how I could prepare for it. Instead, we were ushered out of the room quickly, leaving me feeling more confused and anxious than before. The lack of communication and clarity only added to my sense of helplessness, leaving me with a swirling mix of emotions that included sadness, anxiety, and a lingering feeling of being unheard.

The person I once was, full of confidence, seemed like a distant memory, overshadowed by the weight of my injury, unjust treatments, and prolonged struggle I had been enduring. I had lost my voice!

Weeks passed, filled with an overwhelming sense of helplessness and anxiety as I awaited further news. Each day felt like an eternity as I questioned whether I would ever find the help I so desperately needed. Then, one day, I received a letter in the mail that stated "MSK". The acronym was unfamiliar to me, and I found myself puzzled and anxious about what it could mean. My mind raced with possibilities; was it a new diagnosis, a referral to a specialist, or something else entirely? The uncertainty of it all only deepened my anxiety, leaving me to wonder what the future held and whether I would ever regain the confidence and strength I once possessed.

In this moment of confusion, I realised that I needed to take control of my situation. I began to research what MSK could stand for in the context of my treatment. I learned that it often refers to "musculoskeletal", which involves a wide range of conditions affecting the muscles, bones, and joints. This new understanding sparked a flicker of hope within me; perhaps this was a step closer to receiving the specialised care I needed. Yet, the lack of communication and clarity from my previous physiotherapist and doctors left me feeling unsettled and yearning for a more supportive environment where my concerns could be addressed openly and honestly. Then, maybe—just maybe—I could find my voice to advocate for autistic women once more.