top of page

Balancing Act: The Struggles of Running a Non-Profit While Caring for a Child with Lymphedema


Balance work and caregiving
Balance

Hello, wonderful community! Today, I want to open up about a deeply personal aspect of my life—juggling the responsibilities of running a non-profit organization and being a caregiver to my child with lymphedema. This dual role is incredibly challenging, and I often find myself struggling to balance the two.



Running a non-profit is no small feat. It involves endless planning, fundraising, community outreach, and much more. Add to this the responsibilities of being a caregiver, and my days often feel overwhelming.


My mornings start early, coordinating treatments and therapies for my child. Lymphedema requires meticulous daily care—manual lymphatic drainage, compression garments, and regular physical activity. Each day brings its own set of challenges, whether it's managing flare-ups or dealing with the emotional toll it takes on my child and our family.


The truth is, finding balance feels almost impossible most days. The demands of the non-profit and the needs of my child often collide, leaving me feeling torn and stretched thin. Here are some strategies that I’ve been trying to manage both roles, but it’s a constant work in progress:


Every morning, I identify the top three tasks for both my non-profit and caregiving roles. This helps me focus on what’s truly important, but often I find myself having to re-prioritize on the fly.


This is where I struggle the most. My biggest enemy is myself, because I don’t always ask for help. I never want to bother someone or make them feel obligated. As a result, I often end up feeling overwhelmed and isolated. Learning to lean on others has been a humbling experience, but it's still a work in progress.


As caregivers and non-profit leaders, we often put ourselves last. I’ve learned that taking even a few moments each day for self-care is essential, but finding those moments can be challenging. There are days when self-care feels like a luxury I can't afford.


The emotional aspect of balancing these roles is perhaps the hardest part. Watching my child struggle with lymphedema is heart-wrenching, and there are days when the weight of it all feels overwhelming. The guilt of not being able to fully dedicate myself to either role can be crushing. Yet, these experiences fuel my passion for our non-profit and remind me why our work is so important.


There are days when I feel like I’m failing at both roles. Days when my child needs more attention than I can give, and the non-profit feels like it’s slipping through the cracks. On these days, I try to remind myself that I’m doing the best I can, but it's hard not to feel inadequate.


Our organization is run entirely by volunteers, including myself. No member or board member is paid. This means that every bit of progress we make is driven purely by passion and dedication. While this is incredibly inspiring, it also adds another layer of challenge as we navigate limited resources and time.


Despite the challenges, there are moments that make it all worthwhile. Seeing the impact of our non-profit on the lives of others, witnessing my child’s resilience and courage, and knowing that we are making a difference—these are the silver linings that keep me going.


One of the most rewarding aspects of my journey is the community we’ve built through the non-profit. Connecting with other families facing similar challenges, sharing stories, and offering support has been incredibly uplifting. It’s a reminder that we are not alone in this journey.


Balancing the roles of a non-profit leader and a caregiver is not easy, and it often feels like an impossible task. But it's a path filled with purpose and meaning. To all the caregivers and non-profit leaders out there, I see you, and I understand your struggles. Let’s continue to support each other, share our stories, and make a positive impact in the world.


Thank you for being part of our community and for your unwavering support. Together, we can rise above the challenges and create a brighter future for all those affected by lymphedema.


Stay strong and keep shining!

-Jamie

Recent Posts

See All

Brandy’s Story

When Brandy first received her lymphedema diagnosis, she was in excruciating pain and desperate for help. She turned to an online lymphedema support group, hoping for some guidance. She posted her sto

Our Experience with the Fast 'n Go Wraps

Fast 'n Go Wraps from Rivera Hybrid Solution As a mom caring for Jo, who has lymphedema, finding effective and convenient treatment options is always a top priority. Back in April, we started using a

1 Comment

Rated 0 out of 5 stars.
No ratings yet

Add a rating
Guest
Jun 06
Rated 5 out of 5 stars.

Never easy. Work and home balance

Like
bottom of page