As a neurodivergent medical student preparing to join the NHS England workforce, it might surprise you to know that I often feel reluctant to seek healthcare for myself. After weeks of feeling under the weather, I’ve reflected on the unique challenges of accessing healthcare as an auDHD individual and why this is the case. The journey is complex and layered. However, the two most significant hurdles in my experience are:
Recognising when something is wrong within yourself. This process involves tuning into your body, overcoming self-doubt, and finding the courage to admit you need help.
Navigating the healthcare system itself, which often involves overcoming logistical, emotional, and systemic barriers – like the anxiety of interactions, the strain of being questioned or dismissed, and the frustration of having to repeatedly justify your diagnosis.
In this blog, I delve into these two key aspects, drawing on my own perspective as both a patient and a medical student. By sharing my journey, I hope to shed light on the challenges of accessing care and spark conversations about how we can create a more inclusive and understanding healthcare system.
1. Recognising When Something Is Wrong
While navigating healthcare can be daunting for anyone, my first challenge is often something even more fundamental: identifying when something is wrong in the first place.
Why is this so difficult? For me, three key factors stand out: interoception difficulties, alexithymia, and rejection sensitivity.
Interoception is an often overlooked but a vital sense that enables us to interpret internal bodily signals such as hunger, pain, thirst, or tiredness. For those with interoception challenges, however, these signals can be vague or indistinguishable.
Personally, I can tell when I feel ‘off’ or ‘weird’, but I often can’t pinpoint why. Am I hungry, tired, in pain, or just overstimulated? Frequently, I can’t decipher the difference. This disconnect leaves me feeling stuck, unsure of how to address what’s ‘off’ or sometimes even understanding if ‘weird’ is serious enough to act on.
Adding to this difficulty is alexithymia – the inability to identify and describe emotions. This makes it even harder to interpret what’s happening internally. For example, I might feel upset after a disagreement with a family member but not be able to identify whether I am frustrated, angry or sad let alone explain the emotion to the other person.
This gap between physical sensations and emotions, in addition to the lack of understanding of both, complicates not only recognising that something is wrong but also articulating it to someone else. How do you describe feeling ‘weird’ in a way that makes sense to another person? Saying, “I don’t feel right, but I can’t explain why,” rarely inspires urgency or understanding from healthcare professionals, leaving me feeling dismissed or invalidated.
This leads to a heightened fear of being misunderstood otherwise known as rejection sensitivity, which in turn creates a relentless cycle of second-guessing, making health concerns deeply anxiety-inducing. Thoughts like, “What if people think I’m exaggerating or pretending?” constantly nag away at me.
This fear isn’t solely about others’ perceptions – it’s also about struggling to validate my own experiences. The internalised doubt often leads me to downplay my symptoms and results in delays when seeking medical attention. This combination of anxiety and self-doubt can make the entire process of recognising and acting on health concerns feel overwhelming.
Having a diagnosis has been instrumental in helping me better understand and identify my behaviours and thought patterns. Over time, I’ve developed strategies that provide support and clarity, such as journaling my symptoms, reflecting on recurring patterns, and practicing self-compassion when uncertainty arises. These approaches have helped me to better tune into my needs and take steps to address them.
Learning to ask for help has also been a significant, ongoing journey. It’s not always easy, but I’m beginning to view it as an opportunity for growth rather than a sign of weakness. Sometimes, it’s as simple as sharing how I’m feeling with someone else and gaining a fresh perspective that helps me process my experiences.
Having a solid support network has been invaluable in this journey. Often, those close to me can recognise when I’m struggling, even before I fully understand it myself, and they help me work through what’s happening. Creating a safe and open space to discuss my feelings has been vital in reducing the impact of rejection sensitivity. By addressing emotions early, I can prevent them from building up and becoming engulfing.
2. Reaching Out for Help
Reaching the brave point of seeking help – or, more often, reaching breaking point when there’s no other option but to ask for medical attention – leads to further hurdles. Even then, the process of accessing healthcare remains fraught with challenges. These additional barriers add further layers of complexity to an already daunting journey, making the act of seeking care feel insurmountable.
The anxiety of calling a GP practice often starts building days before I actually pick up the phone. I spend hours overthinking every aspect of the interaction – rehearsing what I might say, anticipating potential questions, and worrying about how I’ll be perceived.
When I finally muster the courage to call or walk into the practice, the first interaction is often with a receptionist whose response sets the tone for the entire experience. Unfortunately, I’m frequently met with what feels like a frustrated or dismissive attitude. Questions like, “Is this an emergency?” or “Why do you need to see the doctor?” – even if intended to triage and aid with filtering you to the most appropriate appointment or clinical pathway – can feel cold and judgmental when delivered without warmth or empathy.
In that vulnerable moment, it’s easy to feel as though I’m being interrogated, as if I must justify my need for care before I’ve even had the chance to explain myself. While I understand the pressures faced by receptionists and the process they are following as per clinic protocols, these interactions can feel incredibly defensive and amplify the anxiety that led me to seek help in the first place. For me, and many others, this experience often serves as a deterrent, making me even more hesitant to reach out for help in the future.
Executive dysfunction, often associated with ADHD, makes navigating the logistics of healthcare, at times, feel almost impossible. Each stage of the process feels like a separate mountain to climb, and the mental effort required to navigate even the smallest step can quickly become paralyzing. What might seem like a simple task to others – calling the practice, scheduling an appointment, or following through – becomes an intricate and exhausting ordeal.
Once I finally manage to make the call the next hurdle arises, scheduling the appointment, which is often booked for several days or weeks later. The pressure to predict how I’ll feel or what my schedule might look like on a given day feels insurmountable. It’s not just about logistics; it’s about trying to account for unknown variables in a brain that struggles to process them.
The fear of committing to the ‘wrong’ date – whether due to an unexpected clash, low energy, or heightened anxiety – can leave me frozen, or unable to proceed. In that moment of paralysis, I find myself hanging up before even finishing the call. It’s not that I don’t want to make the appointment or that I don’t value my health – it’s the sheer weight of trying to balance the unpredictable nature of life with the rigid expectations of the scheduling process. This often leaves me stationary in a cycle of avoidance, pushing the task further down my to-do list, even when I know how important it is.
Once I’ve managed to book an appointment, yet another hurdle presents itself, the anxiety of the interaction itself. Healthcare settings are inherently high-pressure environments, but for someone with heightened sensitivity to rejection or miscommunication, they can feel almost unbearable. Walking into a consultation often feels like stepping into a performance, where the stakes are high and the margin for error feels non-existent.
The pressure to articulate my symptoms clearly and concisely in such a limited amount of time is overwhelming. Despite rehearsing what I want to say in front of a mirror or a loved one beforehand, the stress of the moment can cause my thoughts to scatter. Words that seemed clear and coherent in my head suddenly feel jumbled, making it difficult to express myself effectively. This inability to communicate as I’d planned often leaves me frustrated, compounding the anxiety I already feel.
On the other side of the interaction is a healthcare professional, often juggling a packed schedule and an endless list of patients to see. While I understand the time pressures they face, the perception of frustration or impatience – whether real or imagined – only amplifies my fear of being misunderstood or dismissed. This fear often leads me to downplay my symptoms, worried that I might come across as exaggerating or wasting their time.
On rare occasions, I might choose to disclose my diagnosis in the hope that it will provide helpful context for the clinician and may give context to my fumbling. More often, the topic comes up when I’m asked for my past medical history but disclosing my diagnosis often feels fraught with emotional risk.
While the intention behind sharing is to foster understanding and improve the quality of care, the reality is often far more complicated. Disclosing my autism or ADHD can result in a range of responses – from dismissal and scepticism to assumptions that overshadow the reason I sought help in the first place. Instead of feeling supported, I find myself bracing for questions or comments like, “What does that really mean – you’re autistic?”, “Do you have a formal diagnosis?” or “It doesn’t seem to affect you much, does it?”
I’ve been a patient at multiple practices, yet I often find myself in the same frustrating situation. Despite informing the practice of my diagnosis on multiple occasions, I’m repeatedly forced to validate not only my diagnosis but also my challenges and even my need for care. This constant need to prove myself – to strangers who seem to question the very foundation of my reality – is both exhausting and disheartening.
What makes this process even harder is that these conversations often take place when I’m at my most vulnerable – when I’ve finally gathered the courage to seek help. The emotional toll of having to justify myself in those moments feels unbearable. Navigating a world that isn’t designed for people like me already consumes so much of my energy, and in those critical instances, I simply don’t have the strength to fight that battle again.
A Call for Reflection
This isn’t just about me – it’s about the systemic barriers faced by countless individuals who feel unseen, unheard, and invalidated in healthcare settings. As someone training to join this system, it’s disheartening to know that my experience is far from unique.
Inclusivity in healthcare is often talked about, but true inclusivity requires more than policies or box-ticking exercises. It’s about fostering genuine awareness, cultivating empathy, and shifting attitudes. It’s about creating environments where patients feel safe to share their realities without fear of being dismissed or misunderstood.
We must ask ourselves: Are we doing enough to make healthcare truly inclusive for neurodivergent individuals? How can we better prepare healthcare professionals to approach patients with compassion and understanding, especially when their experiences fall outside the “norm”?
This isn’t merely a critique of individuals but a call to action for the entire system. By making small, thoughtful adjustments, we can create monumental, positive change:
Listen to neurodivergent patients: Their lived experiences provide invaluable insights that can guide the system towards meaningful and practical improvements.
Facilitate online appointment bookings: This simple option removes the initial barrier of making a phone call, which many neurodivergent individuals find stressful.
Offer the option to book longer appointments: This reduces the pressure of time constraints, fostering a more patient-centred approach.
Add an alert for neurodivergent diagnoses in patient notes: A discreet reminder for clinicians can promote greater awareness and tailored care.
Encourage empathetic communication and flexibility in care: Adopting a compassionate approach can make the clinical experience far more inclusive and effective.
Prioritise continuity of care: Ensuring that patients see the same clinician, already familiar with their past medical history, can significantly enhance trust and outcomes.
As a future doctor, I hope to be part of this change. But I know that true progress requires a collective effort. It starts with listening to patients, trusting their lived experiences, and accepting their truths without judgment.
Thanks for reading,
Nidhi :)
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