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Thriving as an "Identified Patient" with a Disability or Chronic Condition in a Toxic Family

A sepia toned picture of a multi-generational victorian family staring blankly out at the photographer. Fromlower left to right: Father, infant son, grandmother, and mother. Standing back: One older daughter, and one younger daughter.
Toxic families have a sinister impact.

My journey began with the weight of a mental health condition—Borderline Personality Disorder (BPD). I was diagnosed with depression at 12 years old, and shortly after, BPD entered my life, branding me as "the problem child." Constantly told that I "lived in a bubble" and that my emotions were "overly emotional," I felt misunderstood and labeled. Life took another turn when I was diagnosed with Motor Neuron Disease, a progressive physical challenge that would forever alter my path. The disconnect between my family and the reality of my situation continued, resulting in hurtful accusations and a deep sense of isolation.

Amidst this tumultuous environment, my mother stood as the sole family member I remained in contact with. Navigating the web of family influences took patience and grace. As I removed myself from most of my blood-related relationships, I wholeheartedly embraced my chosen family, seeking strength and support from those who truly understood me and what I was going through. Adaptive workouts, therapy, and self-advocacy became crucial aspects of my journey, guiding me toward self-acceptance and resilience. Let's dive into these challenges and explore ten practical tips on how to navigate your own complex journey with optimism and strength.

1. Blame and Misunderstanding

Example: Imagine you have a chronic condition, and your family often misunderstands or blames you for your health struggles. They might say things like, "You're just not trying hard enough." Or simply "I don't believe you."

Approach: Start by educating your family. Share information about your condition, provide them with resources to learn more, and encourage open conversations. You can say, "I'd love to help you understand what I'm going through. Let's talk about it."

2. Increased Dependency

Example: You may rely on your family for essential tasks due to your condition, but they sometimes take advantage of your dependence.

Approach: Set clear boundaries. Define what assistance you need and specify the limits to prevent manipulation. For instance, say, "I appreciate your help, but let's discuss the type of assistance that works best for both of us."

3. Neglect or Inadequate Care

Example: Your family's neglect may lead to inadequate care, affecting your health and well-being.

Approach: Seek external support, such as healthcare professionals or support groups. They understand your condition and can provide guidance. You can tell your family, "I've found a support group that can help me manage my condition better."

4. Stigma and Isolation

Example: Your family's lack of understanding and support may make you feel isolated, like you're the odd one out.

Approach: Build a support network of individuals who share your experiences, either locally or online. This combats isolation and fosters a sense of belonging.

A set of dark skinned hands rests with fingers laced, another gentle lighter skinned hand is placed reassuringly on the wrist.
Seek support and foster belonging.

5. Additional Stress and Health Implications

Example: Toxic family dynamics add extra stress to your life, potentially worsening your health condition.

Approach: Prioritize self-care, including relaxation techniques like meditation or deep breathing exercises. It's essential to manage stress to maintain your overall health.

6. Emotional Toll

Example: Constant blame and misunderstandings can take a toll on your emotions, leading to feelings of worthlessness and resentment.

Approach: Consider therapy and counseling. Therapists can help you process and address these feelings, offering you a safe space to express yourself.

7. Barrier to Seeking Help

Example: Your family may discourage you from seeking medical or therapeutic assistance when you need it.

Approach: Trust your instincts when it comes to your health. Seek assistance when necessary, despite any discouragement.

8. Financial Strain

Example: Managing a disability or chronic illness often comes with significant financial costs.

Approach: Seek financial guidance to manage these expenses. Explore resources like disability benefits or financial assistance programs.

9. Challenges with Self-Advocacy

Example: Toxic family dynamics may have made you passive, making it hard to assert your needs.

Approach: Work on building your self-advocacy skills gradually. Start by asserting your needs in smaller, less intimidating situations and build from there.

10. Limited Opportunities for Independence

Example: Toxic families may not provide the support needed for independence.

Approach: Set goals for independence, no matter how small. Celebrate each achievement as a sign of progress.

With time and the help of my chosen family, I found the strength to face each day openly, honestly, and lovingly. I actively sought support and opportunities to socialize with those who share similar disability experiences, allowing me to build a support network rooted in understanding and compassion. Adaptive workouts, such as yoga and pilates, grounded me and celebrated every small achievement, reinforcing my capacity for self-love and self-care.

A round of therapy earlier this year further deepened my self-discovery. I realized it's okay to prioritize my emotions regarding my disability, gaining more capacity for empathy and compassion toward others in the process. My journey has inspired me to strive for greater knowledge in mental health's impact on disability and increase access to improved well-being for disabled individuals, emphasizing their identity as people first, with disability as a secondary aspect. Celebrating every milestone by being more visible as myself, I've come to present my best and most authentic self, embracing each day with strength and authenticity.

Philippa sits in a loose white tshirt, in her wheelchair with her back to the frame glancing serenely over her shoulder.
Align yourself with "you".

Your strength is boundless. Being the "identified patient" with a disability or chronic condition in a toxic family will not define you. Embrace your unique path, seek external support, educate your family, and prioritize self-care. You can manage your health effectively. You can rise above the toxicity, rebuild your self-esteem, and create a future you are unimaginably proud of. Your journey is one-of-a-kind, and your strength knows no bounds. Keep moving forward, knowing that better days lie ahead.


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