Advocacy, Accommodations, and the Power of a Shared Story
This article is based on Joshua’s and Tim’s podcast conversation. Have a listen or watch it here.
The moment Joshua Peterson found himself in excruciating pain, collapsed under his desk at work, marked a turning point in his life. His journey with Crohn's disease, a no-cure, relentless and often invisible condition, had reached a critical point. The pain that day was not just a symptom; it was a rupture, a literal breaking point that led to the discovery of his intestines opening into his bladder — a severe complication of Crohn's disease. This moment, as challenging as it was, underscores a reality many with invisible conditions live through daily, often in silence.
Joshua's story is not unique but part of a larger narrative shared by many, including myself.
Our podcast conversation shed light on the shared experiences of living with Crohn's disease, the trials, the resilience required to navigate life with an invisible condition, and the critical importance of advocacy and workplace accommodations.
“The moment I decided to openly share my journey with Crohn’s, I realized the power of vulnerability. It’s not just about coping with a condition; it’s about building a community of support and understanding.”
Contents:
The Diagnosis Journey
Our Shared Stories
For Employers: Advocacy and Workplace Accommodations: Changing the Narrative
Living with an Invisible Condition in the Workplace
A Call for Empathy and Action
Additional Resources on Crohn’s Disease
The Diagnosis Journey: A Shared Experience
Joshua's diagnosis story begins with confusion, pain, and a desperate search for answers.
His recounting of the days leading to his diagnosis, the struggle to understand his body's deterioration, and the eventual emergency that showed the severity of his condition, sets the stage for a conversation about the complexities of living with Crohn's.
Joshua’s story resonates on another level. While I wasn’t working in an office, I was at work when I needed to be rushed to the hospital. My disease, like Joshua’s, was out of control and caused other internal issues.
In our conversation, Joshua talks about asking his doctor to open him up and take out the damaged intestine. This didn’t happen until complications emerged and he experienced emergency surgery.
For Joshua, like many others, the diagnosis was not an end but the beginning of a journey marked by self-discovery, advocacy, and a commitment to helping others navigate similar paths.
Getting a diagnosis often takes so much determination and resilience. It often feels rewarding once we achieve this milestone but in reality, a diagnosis is the beginning of the journey now that we know what we live with.
One thing I have found energy in is hearing others' journeys and how they’ve advocated for themselves to get answers. If you are struggling with how to advocate for yourself, have a read here.
When Joshua connected as strangers, our individual experiences became a shared experience. This happened through the power of LinkedIn’s algorithm — strangers with no connections connected over Crohn’s and our journey with this disease.
Our Shared Stories: Strength in Numbers
When we connected on LinkedIn, Joshua shared with me that despite not having any mutual connections, one of my posts crossed his feed. I was sharing about my journey with Crohn’s and he read this while receiving his IV medication.
He immediately reached out and connected.
LinkedIn message between Joshua and Tim
In talking about our journeys with Crohn's, we discovered many similar shared experiences. From the initial shock and adjustment to chronic illness to the daily challenges of managing symptoms, our stories reflect a broader narrative within the Crohn's community.
These shared stories are not just about the struggles we face but about the moments of strength, resilience, and solidarity that emerge from them.
This sense of community and shared experience is vital. It reminds us that while our conditions may be invisible, we are not alone. There's power in sharing our stories, not just for our healing, but in fostering understanding, breaking down stigmas, and building a supportive network for others.
If I didn’t step out vulnerably, I wouldn’t have met Joshua. And my life is much richer now that I know him!
If you are thinking about sharing your story but are still unsure, here are a few reasons why sharing our stories is important:
Building Community and Connection:
Sharing stories about living with an invisible condition, like Crohn's disease, fosters a sense of community and connection among those who may otherwise feel isolated by their experiences. As Joshua and I discovered through our connection, finding someone who truly understands the daily realities and challenges can be profoundly comforting and empowering. This sense of belonging can help individuals navigate their conditions with greater confidence and less isolation.
Advocacy and Raising Awareness:
Personal stories have the power to highlight the realities of living with invisible conditions, moving beyond stereotypes and misconceptions. By openly discussing the specifics of your journeys, including the need for workplace accommodations and the challenges of managing symptoms, you contribute to a broader understanding and awareness. This advocacy is crucial for driving systemic change, whether it's in fostering more inclusive workplaces or influencing healthcare policies that support individuals with invisible conditions.
Empowerment Through Visibility:
Sharing your story can be an act of empowerment, both for the storyteller and the listener. For many, seeing their experiences reflected in others' stories is validating, affirming that their struggles are real and recognized. It also encourages others to share their own stories, creating a ripple effect that increases the visibility of invisible conditions. This visibility is key to ending stigma and ensuring that individuals feel seen, heard, and supported in all aspects of life, including within their families, social circles, and workplaces.
But, I get it. It’s hard. It’s scary. It’s vulnerable. As my friend and past podcast guest said to me, “Because I shared my story so publically, I have made many new friends, connected with amazing people, and have shared how my story isn’t finished yet.”
These reasons for sharing stories about invisible conditions aren’t just about the act of sharing but about the impact these stories can have on individuals, communities, and society at large.
For Employers: Advocacy and Workplace Accommodations: Changing the Narrative
Joshua is a workplace accommodation expert. He has worked at companies such as Boeing, Meta, and now Disclo. So, naturally, our conversation centred on self-advocacy, particularly in the workplace.
In the workplace, like many conditions, Crohn’s Disease can be challenging. Because symptoms are so different between people who live with this disease, it’s important to note that the accommodation needed depends on your situation.
“Start with listening. Those living with invisible conditions likely know what they need to succeed. Ask us and don’t assume!”
Employers have a crucial role to play in changing the narrative around invisible conditions. By fostering an inclusive environment, providing clear pathways for support, and actively working to understand and accommodate the needs of all employees, businesses can unlock the full potential of their workforce.
This isn't just about meeting legal obligations but about creating a culture of empathy, support, and respect.
Enhance Workplace Inclusivity:
Advocate for flexible accommodations and a culture that prioritizes well-being, making workplaces supportive for individuals with invisible conditions.
Foster Self-Advocacy:
Equip those with invisible conditions with the knowledge and confidence to advocate for their needs, raising awareness and understanding in the process.
Normalize Open Conversations:
Break the stigma by openly discussing invisible conditions, fostering a society that embraces understanding and empathy through media, education, and public discourse.
Implement Clear Policies and Processes:
Make it easy for employees to request and receive accommodations. Transparent policies and straightforward processes are key to building trust and ensuring everyone feels supported.
The fear of stigma, misunderstanding, and the potential impact on one's career can be daunting. Yet, Joshua's work, especially with platforms like Disclo, offers hope and practical solutions for bridging this gap.
If you are an employer reading this, pause and have a look at your accommodation processes. If they don’t exist or if they are terrible, it’s time to change this! Head to Disclo or reach out to me!
“Workplace accommodations are not just about comfort; they’re about equality. Everyone deserves the chance to succeed professionally, regardless of the invisible battles they’re fighting.”
Living with an Invisible Condition in the Workplace
I hid my disease from many employers. I hid out of safety for myself. I hid because I was filled with shame and fear. The narrative we often have does not serve us. “I don’t want to get passed over for a promotion”. “I don’t want to be seen as less”. “I don’t want to be a burden”.
For individuals living with an invisible condition, the journey toward acceptance and finding our voice is a journey and one not to take lightly. A theme we talk about a lot at Invisible Condition is self-advocacy; understanding your rights and confidently voicing your needs are foundational steps in securing necessary accommodations and support.
For me, sharing my story has been a labour of love, guilt and fear. But for me, I started to understand that this is '“my normal” and am learning that there is the power of sharing my story.
By opening up about your experiences, you not only facilitate your healing but also pave the way for others, offering inspiration and fostering a sense of community among those facing similar challenges.
Seeking Community Support:
Connecting with others who share your condition can provide invaluable insights, emotional support, and a sense of belonging. These connections can help you to navigate your condition with greater resilience, highlighting the importance of solidarity in the face of adversity. Together, these practices not only enhance individual well-being but also contribute to a broader cultural shift towards inclusivity and understanding.
Your Story Matters:
Sharing your journey can be powerful. It not only aids in your healing process but can also educate, inspire, and support others navigating similar challenges.
Start small. consider sharing your story with a close colleague. And, if you are feeling bold, consider talking with HR or your DEI committee about hosting a learning session on your condition. You are a normal person and your normal looks different than others.
A Call for Empathy and Action
Joshua Peterson's story, from the moment of pain and uncertainty under his desk to his ongoing work in advocacy and support for others, embodies the resilience and determination that many with invisible conditions possess.
Our conversation is a reminder of the challenges faced by those with Crohn's disease and other invisible conditions, but also of the incredible strength, community, and hope that exist within these narratives.
At Invisible Condition, our mission is to shine a light on these stories, elevate voices, and foster a community where everyone feels seen, understood, and supported. Whether you're living with an invisible condition, know someone who is, or simply want to learn more and offer support, remember that empathy, understanding, and action can make a world of difference.
Together, we can navigate the complexities of invisible conditions, advocate for necessary changes, and build a more inclusive world — one story at a time.
Additional Resources on Crohn’s Disease
What is Crohn’s Disease?
Crohn's disease is a chronic inflammatory condition of the gastrointestinal (GI) tract, part of a group of conditions known as Inflammatory Bowel Disease (IBD). Unlike other GI disorders, Crohn's can affect any part of the gut, from top to bottom, but most commonly it targets the end of the small bowel (the ileum) and the beginning of the colon.
The inflammation caused by Crohn's disease often spreads deep into the layers of affected bowel tissue, leading to painful and sometimes life-threatening complications.
How Does Crohn's Disease Show Up?
The symptoms of Crohn's disease can vary significantly from person to person, depending on the part of the gastrointestinal tract affected. Common complications include:
Abdominal Pain and Cramping: Inflammation and ulceration can affect the normal movement of contents through the digestive tract and may lead to pain and cramping.
Persistent Diarrhea: Intestinal inflammation causes the intestinal cells to secrete large amounts of water and salt. Because the colon cannot completely absorb this excess fluid, people with Crohn's disease often experience frequent, watery stools.
Bleeding: Ulcers can form anywhere along the GI tract, leading to blood loss and bloody stools.
Fatigue and Weight Loss: Chronic inflammation can lead to fatigue, while malabsorption of nutrients may cause weight loss and malnutrition.
Beyond these physical symptoms, Crohn's disease can also have significant emotional and psychological impacts, contributing to a sense of isolation or stress, which can further exacerbate the condition.
The Data: Crohn's Disease Prevalence in Canada and the United States
United States:
According to the Centers for Disease Control and Prevention (CDC) and other sources, it's estimated that approximately 3 million people in the United States were living with IBD (which includes both Crohn's disease and ulcerative colitis) as of 2015. Given the growth in population and diagnostic rates, this number is likely higher today. Crohn's disease accounts for a substantial portion of these cases, though specific figures can vary depending on the source.
Canada:
Crohn’s and Colitis Canada reports that Canada has one of the highest rates of IBD in the world. As of their latest data, over 270,000 Canadians are living with IBD, with this number expected to rise to 400,000 by 2030. This includes both Crohn's disease and ulcerative colitis, with Crohn's disease making up a significant percentage of these cases.
Resources, Support Groups, and Example Accommodations
Resource: Crohn's & Colitis Foundation
Community: Crohn's & Colitis Community
Example Accommodations: Restroom access, dietary accommodations, flexible work schedule, work from home, frequent rests
