Self-Advocacy Q&A with Deborah King: Ulcerative Colitis
Deborah King
Founder, Global Measure Inc.
Sharing my journey with Ulcerative Colitis, career, and advocacy. Insights on managing an invisible condition, emphasizing resiliency and community support.
“To anyone grappling with the decision of whether to disclose their journey with an invisible condition, I offer words of encouragement and solidarity. While the choice to share such intimate aspects of one’s life can feel daunting, I’ve learned firsthand the transformative power of vulnerability and authenticity.”
Tell us a bit about yourself, your diagnosis journey and the invisible condition(s) you are living with.
I’m a 5’0” petite female originally from the Caribbean, now based in Canada. Armed with a passion for math and science, I pursued an Industrial Engineering degree at the University of Toronto before diving headfirst into a fulfilling career. Eventually, I started my own venture, Global Measure Inc., where I specialize in certifying sustainable fashion brands.
My journey with an invisible condition began shortly after entering the workforce. I started experiencing persistent abdominal pain and alarming changes in my bowel movements. It wasn’t until I lost close to 20 pounds rapidly, that I attempted to seek medical help.
Navigating the healthcare system proved to be a daunting challenge, to say the least. I encountered a series of misdiagnoses and dismissals from medical professionals. Despite seeking multiple opinions, I faced resistance and frustration, with some doctors even refusing to listen to my concerns.
Close to 10 years later, I met a compassionate physician who recognized that treating my symptoms individually wasn’t a viable long-term solution. He also recognized that some of my symptoms were similar to his wife’s. With his help, I finally received a diagnosis of Ulcerative Colitis.
Looking back, it's frustrating to think about the years it took to get answers. But it also highlights the importance of persistence and self-advocacy in navigating the healthcare system.
How would your friends describe you and your personality?
Before my health journey began, I was outgoing, sociable, and always ready for an adventure. I thrived on connecting with others and ensuring everyone felt valued and included. My friends would describe me as cheerful, outgoing, and welcoming.
However, as my symptoms emerged, I found myself retreating into a quieter, more introspective space. Dealing with the physical and emotional toll of my condition was a challenge. I struggled to maintain the same level of energy and engagement. During this period, my friends may have noticed a shift in my demeanour and assumed I was withdrawing.
Now, having gained clarity and a better understanding of my health, I've found a renewed sense of balance. While I still cherish social connections and value time spent with friends, I approach social interactions with a greater awareness of my limitations and the need to prioritize self-care. Despite the challenges I've faced, I remain optimistic and strive to maintain a positive outlook on life.
Today, my friends would likely describe me as kind-hearted, thoughtful, and resilient. While I may be more reserved than before, I believe my zest for life and genuine warmth continue to shine through in all that I do.
How has the invisible condition impacted your life?
Living with an invisible condition has fundamentally shifted how I navigate my personal and professional life. A reality of living with colitis is that your energy reserves are much less than the “average” person. As an entrepreneur, every minute counts, but I've had to become acutely aware of the limitations imposed by my health.
Balancing the demands of running a business with managing my condition requires careful planning and prioritization. I've learned to be strategic about where I invest my time and energy, often having to decline social or networking opportunities. Despite my best intentions, there are times when I push myself too hard, only to pay the price with days of extreme exhaustion and diminished productivity.
However, I've also grown to embrace a mindset of self-compassion and boundaries. Learning to say no when necessary has been a crucial aspect of maintaining my well-being. While I still do feel guilt about turning folks down, I recognize that prioritizing my health is essential for long-term sustainability. By listening to my body and honoring its needs, I've found a renewed sense of balance and resilience in the face of adversity.
Please share any experiences of stigma or discrimination that you have experienced due to your condition.
It's disheartening to recount an experience of stigma and discrimination, but it's an unfortunate reality for many of us living with invisible conditions. Several years ago, I experienced a flare-up during my employment at the time, necessitating a period of medical leave. While I returned to work feeling physically stronger, I encountered unexpected challenges.
Upon my return, my manager informed me that certain “privileges” would be revoked due to my health condition. In hindsight, I realized this was a form of discrimination, yet at the time, I internalized it as a deserved punishment for my illness. It's troubling to reflect on how societal attitudes toward health can perpetuate such injustices, leaving individuals like myself feeling marginalized and unsupported.
Although I chose not to pursue the matter legally, this experience serves as a stark reminder of the ongoing need for advocacy and education surrounding invisible conditions. By sharing our stories, we can shed light on the prevalence of discrimination and work towards fostering a more inclusive and understanding society.
What does self-advocacy mean and how have you managed to advocate for yourself? Any advice to share?
Self-advocacy, to me, is about recognizing and asserting my needs, rights, and boundaries in various aspects of life, particularly concerning my health. It's been a journey of self-discovery and empowerment, one that has evolved over many years of navigating the complexities of living with an invisible condition.
For a significant part of my journey, I felt compelled to conceal my illness, fearing judgment or discrimination. However, as I've grown and gained confidence, I've come to understand that transparency and advocacy are essential to my well-being. Learning to embrace my truth and speak up for myself has been a liberating experience, allowing me to reclaim control over my narrative and advocate for the support and accommodations I need.
One pivotal aspect of self-advocacy has been educating myself about my rights. There was a time when I encountered a significant discriminatory issue in the workplace, one that should have been addressed and escalated. Through this experience, I learned the importance of being informed about legal protections and standing up against injustice.
Lastly, my journey in self-advocacy has taught me valuable lessons that I'm eager to share with others facing similar challenges. I encourage individuals to prioritize self-awareness and acceptance, recognizing that their health journey is valid and deserving of acknowledgment. I also emphasize the importance of seeking out resources and support networks (like Crohn’s and Colitis Canada) that can provide guidance and assistance in advocating for one's needs. And finally, I urge individuals to embrace their voice and speak up courageously, knowing that their advocacy has the power to effect change and promote greater understanding and inclusivity.
What motivates you to disclose your disability despite the courage it requires?
One of the driving forces behind my decision to disclose my disability is the realization that the younger version of myself would have greatly benefited from the knowledge and support that I possess now. Reflecting on my own journey, I recognize the profound impact that access to information and shared experiences can have on individuals grappling with similar challenges. By speaking openly about my disability, I hope it can bring hope and understanding to those who may be navigating similar struggles in silence.
Moreover, I'm acutely aware of the pervasive sense of isolation and invisibility that often accompanies living with an invisible illness. The stigma and misconceptions surrounding such conditions can breed feelings of shame and alienation, leading many individuals, myself included, to retreat into secrecy. However, I’ve learned over the years that most people – the people you want in your corner – understand and want to support us.
What encouragement would you offer to someone living with an invisible condition who is considering whether to openly share their journey and experiences?
To anyone grappling with the decision of whether to disclose their journey with an invisible condition, I offer words of encouragement and solidarity. While the choice to share such intimate aspects of one's life can feel daunting, I've learned firsthand the transformative power of vulnerability and authenticity.
First and foremost, I urge you to remember that you are not alone. Reach out to others who may be walking a similar path, whether it's through online support groups, local community organizations, or trusted friends and family members. Connecting with individuals who understand and empathize with your experiences can provide invaluable support and reassurance.
If you find yourself at a crossroads, debating whether to speak up or remain silent, I encourage you to listen to your intuition. While the decision to disclose is deeply personal and should be made on your own terms, consider the potential benefits of sharing your truth. Speaking openly about your journey not only allows you to break free from the confines of secrecy and shame but also empowers you to advocate for your needs and educate others about the realities of living with an invisible condition.
That said, take your time and proceed at your own pace. Remember that there is no right or wrong way to navigate this journey, and it's okay to prioritize your comfort and well-being above all else.
Above all, I want to remind you of the inherent strength and resilience that resides within you. Regardless of the path you choose, know that you are deserving of love, acceptance, and support. Your voice matters, and your story has the power to inspire, uplift, and ignite change. Trust in your truth, embrace your authenticity, and know that you are worthy of every ounce of kindness and compassion the world has to offer.
Bio: Deborah King is the founder of Global Measure Inc., Canada’s first social enterprise certifying sustainable and ethical fashion. She grew up on the idyllic island of Tortola in the British Virgin Islands, where her mother instilled in her a love for sewing during childhood. Moving to Canada as a pre-teen, Deborah continued sewing due to the challenge of finding clothes that fit her. As an adult, she observed the rise of fast fashion and recognized the need for a deeper understanding of the industry.
Amidst her exploration, Deborah was diagnosed with ulcerative colitis, a condition that heightened her awareness of sustainable fashion's importance. Leveraging her background in Industrial Engineering, she pursued a post-graduate education in Sustainable Fashion Production, collaborating with experts to address the disparities in the industry.
Despite health setbacks, various supports have motivated and enabled her to successfully combine her passion and skills to combat greenwashing in fashion.
Photos taken by Dom Productions (IG)