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Storytime: Embracing Resilience as "The Identified Patient" (now with fortifying MND!).
Content warning: This blog does discuss familial neglect and abuse and may be triggering for some. It certainly was for me when I was writing it. Please read with diligence and respect for your mental health and well-being.
I know what it's like to be the "identified patient" in a dysfunctional family, the one unfairly blamed for the majority of the family's problems. It's as if they're saying, "You're the issue, you need to change." This role can be incredibly challenging and, as I've learned, extremely common for someone diagnosed with a mental of physical health condition early in life within a 'toxic' family environment. It can lead to overwhelming feelings of guilt, shame, and isolation that persevere well into adulthood. It is not unlikely to end up stuck with a label that is remarkably difficult to shift regardless of success in managing your mental health, while the rest of the family strives to avoid taking responsibility for their own contributions to the family's issues. It can really mess with your self-esteem, making it tough to set boundaries or maintain healthy relationships outside of the family unit. Add to this a disability and... let's just say that this blog was difficult to write. My journey began with the weight of a serious mental health condition—Borderline Personality Disorder (BPD). Well...I was diagnosed with depression at 11, and by the age of 13 or 14, BPD entered my life. It marked the start of my journey as "the problem child," with my condition acknowledged but rarely fully understood or supported. I was constantly told that I "lived in a bubble" or that all of my emotions were "unstable". My behaviours were poorly managed, poorly directed, highly destructive, and nearly constantly triggered in a house-hold plagued by regular physical and emotional abuse. But it was my mental health condition; even as a child, it felt like a lot of the time, I was left to "suck it and see" and suffer the consequences for failing without guidance. As a result, I was branded as "a liar," "manipulative," and "unstable," in most situations, even when I wasn't. And, sometimes, when the accusing party was actually the perpetrator. The thing about a dysfunctional family is that one has to balance the engrained historical expectations of child development versus what we understand to be impactful now. While I'm sure my parents were doing the "best they knew how to do" (including the Boomer assurance that sparing-the-rod;beating-the-child was a viable approach to discipline), there were absolutely situations that were distinctly traumatic for their children, and projections of the poorer elements of their own upbringing. I believe my mother was distinctly aware, and similarly affected as I was, but could not removeherself from the situation at the time. I feel that my father knew but simply didn't care or was too ashamed to seek change; so committed to repeating the cycle, he behaves pretty much the same as he always has sans his physical temper. Despite my assumptions, if they absolutely didn't know the impact then, they certainly know now.
Life took another drastic turn 20 years later when I was diagnosed with a Motor Neuron Disease, a progressive physical challenge that would forever alter my path. The reality of this condition was largely lost on my immediate family. They failed to grasp the profound impact it would have on my life, leaving me feeling scared, angry. As time went on and my condition progressed (now, I rely on a wheelchair for most of my daily mobility), yet, the disconnect between my family and the reality of my situation continued. I was, again, accused of being "dramatic" and "too demanding" when I saught emotional support from them. I heard hurtful words—liar, hypochondriac, and more. My father demanded proof in the form of a formal meeting between him and my neurologist (of which there are several, one being Greek), my siblings kept their distance- I have never discussed my disability with them. When they did engage, their conversations revolved around who I "had been" as a child and a teenager. I had already uncovered who I 'had been', through a decade of psychological therapy; emotionally neglected or manipulated, often physically abused, and generally being labeled as a 'troublemaker' for failing to conceal other people's guilt, shame, and abuse for them. It was impossible for them to move past my role as the "identified patient" in the family to support me in my real-lived experience. And I was too exhausted after so many years (and managing my disability) to push it- not to mention it was and is NOT my responsibility!
Amidst this tumultuous environment, my mother stands as the sole family member I remain in contact with. However, this was not without its challenges. Navigating the web of family influences and bad behavioural habits took patience and grace...which I didn't have. I responded to the buttons being pushed with anger and a strong sense of betrayal instead of the non-judgmental mindfulness I had cultivated through therapy. It took time to find the right approach, one where I could share my daily experiences without overwhelming her, and provide accurate and frank updates that preserved my integrity and self-respect. I like to think that doing that means we both respect the boundaries placed, acknowledging the reality of my disability, and her right to accept the impact of it reassured that she has control over how it impacts her. And, through that, I feel we're fostering a better understanding of each other.
As I removed myself from most of my blood-relations, I wholeheartedly embraced my chosen family—my best friend of 28 years, her husband, and my partner. These individuals supported me for who I am, beyond my disability and my mental health. With each other, we maintain open, honest, and loving communication as much as we can. We discuss our traumas and seek to understand how to manage our stress and mental health, cultivating resilience, while providing or suggesting support. It's within this circle that I find the strength to face each day.
About a year and a half into my disability journey, I began a round of therapy to come to terms with its impact on my self-esteem and my perspectives on the past. I began to unravel the source of my profound loneliness in the experience of it—my role as "the identified patient" in my immediate family.
With my chosen family, we keep our interactions honest and open, supporting each other as we navigate our own unique challenges and disabilities. It's an ongoing process for some (recently, even after 4 years, I had to very aggressively tell my partner to stop offering to help on every kerb he deemed challenging). I turned to Instagram to find disabled influencers and explore disability representation. Now, I'm actively seeking support groups for my condition and opportunities to socialize with people who share similar disability experiences.
Adaptive workouts, such as yoga, pilates, and gym routines, have been a source of grounding and progress for me. They allow me to give back to my body and mind, challenge my limitations, and celebrate my achievements based on myself!
The therapy earlier this year helped me understand that it's okay to prioritize my own emotions regarding my disability. By embracing my anger, my fear, and my pride in myself without immediately and exclusively considering the feelings of others instead, I've gained more capacity for empathy and compassion for others. I've rediscovered the importance of valuing my emotions if I want them to work for me rather than against me.
My journey has inspired me to strive for greater knowledge and understanding in the realm of mental health and its impact on disability. I seek to increase access to improved well-being for disabled individuals, emphasizing their identity as people first, with disability as a secondary aspect. I celebrate every milestone by being more visible as myself, I write more openly each time, I share more openly, and I connect with more people. This journey is allowing me to present my best and most authentic self as I continue to evolve through my unique experience.