In complex systems, change takes persistence.

Over the years, coworkers have often described me as “the dog with the bone.” Once I become invested in something, I tend not to let it go. That persistence has helped me create meaningful change within health care systems. It has also shown me how much organization, follow-up, patience, and emotional stamina meaningful change often requires.

I have also learned how often the answer is no. Sometimes the “no” is direct. Other times it comes through silence. Some ideas take longer to gain traction within large organizations than people initially expect. Creating change in any environment can be difficult. In health care systems, it can feel especially challenging.

Health care organizations are responsible for large numbers of patients, employees, regulations, budgets, and risks. Decisions that appear simple from the outside often involve layers of oversight, approvals, coordination, and competing priorities that most people never see. Still, understanding those realities does not necessarily make the process less discouraging.

The temptation to give up.

I have experienced this in clinical practice when advocating for patient education initiatives, operational changes, or workflow improvements that initially seemed straightforward. In health care, even small changes can require multiple approvals, coordination across departments, competing priorities, and months of follow-up before progress becomes visible. Sometimes strong ideas move slowly not because people do not care, but because large systems are balancing many demands simultaneously.

In large organizations, people can begin to expect change to be slow, difficult, or unsuccessful. After watching strong ideas struggle to move forward, some stop trying altogether.

Finding another way to create change.

Over time, my desire to create change on a broader scale contributed to my decision to start a nonprofit.

Initially, I viewed obtaining 501(c)(3) status as the major hurdle. In reality, it felt more like receiving permission to begin. The status gives you a seat at the table, but it does not create credibility, partnerships, momentum, or funding. Those things still have to be built slowly.

Starting a nonprofit has been humbling. One of the more surprising lessons has been realizing that I sometimes spent less effort securing small amounts of support and enormous effort securing none at all.

Large grants often require infrastructure, demonstrated outcomes, reporting systems, and relationships that newer organizations simply do not yet have. Meanwhile, some of the most meaningful support has come from local businesses and individuals responding to something much simpler: authenticity, consistency, and visible effort.

I do not think of myself as a salesperson. I do not even think of myself as especially social. I prefer one-on-one conversations over networking rooms. I like validation. I like hearing that an idea resonates with someone. I still check my inbox hoping for replies to emails I already suspect may never receive one.

Tolerating the discomfort.

And yet nonprofit work requires becoming comfortable with discomfort. Even something as simple as handing out flyers can feel surprisingly vulnerable.

There are many social cues people use when you are standing outside a store with flyers in your hand. Some avoid eye contact so you will not start talking to them. Some give you a wide berth, clearly choosing a less direct route into the store to avoid interaction. Some politely wave you off with their hand before you can finish a sentence.

There are many ways people communicate that they do not want another request, conversation, or commitment. Even when what you are really trying to share is a mission you genuinely believe could help people. At first, I took those interactions more personally than I needed to. But over time, I have learned to think less about convincing people and more about finding alignment.

People are overwhelmed. They are constantly navigating requests, decisions, and competing priorities. Sometimes the timing is wrong. The delivery falls short. Or the mission simply is not aligned with what matters most to them in that moment.

That does not make rejection easier.

Nursing can feel similar. Advocating for patients, proposing practice changes, or questioning existing workflows does not always lead to immediate support. Sometimes resistance is logistical. Sometimes cultural. Sometimes people are simply exhausted by competing demands and ongoing change.

Over time, I have also learned that trying to create change often means accepting that not everyone will immediately understand or support what you are doing. If every decision is filtered through fear of criticism or discomfort, meaningful work becomes difficult to sustain.

If I can tolerate the discomfort, I can learn from it. I can refine the message, improve the approach, and continue trying.

How large organizations and small nonprofits differ.

Working both inside health care systems and within a small nonprofit has also highlighted something else for me: large organizations and small nonprofits each possess strengths the other lacks.

Large health care systems can create infrastructure and scale that small nonprofits cannot replicate. Some grants secured through larger organizations have funded meaningful programming that would have been difficult to accomplish independently. At the same time, implementing ideas within large organizations often requires coordination across multiple departments, schedules, approvals, and competing priorities. Even strong ideas can take time to move forward.

In contrast, some decisions within a small nonprofit can happen remarkably quickly. At one point, we decided to host a comedy fundraiser. Within a couple of weeks, we had selected a date, booked a venue, and established a working budget.

Small nonprofits also operate differently. We do not have the staffing, resources, or institutional reach of a large organization. But we do have flexibility. Smaller organizations can sometimes adapt more quickly to emerging needs. We can directly respond to needs we are actively seeing in the community. Neither structure is inherently better. They simply create different pathways for change.

The question of time.

One thing I did not fully appreciate before starting a nonprofit was the question of time. If you are dedicating evenings, weekends, and emotional energy to mission-driven work, what are you no longer spending time doing? That question matters, especially when you have a family.

In my case, my husband and daughter have been incredibly supportive. But I try not to think about it as my family “allowing” me to spend my time this way. Instead, we think of it as them supporting me in pursuing work that feels meaningful and aligned with who I want to be.

My daughter sees the effort involved in building something you care deeply about. She sees the setbacks, the persistence, the follow-up, and the uncertainty. And when possible, she participates in it with me. She has helped hand out flyers. She is helping me with a large raffle. She participated in a community drum circle so she could better understand the programs we facilitate for cancer patients. Some lessons are best taught directly. Others are best taught by example.

I still have a tremendous amount to learn about building and sustaining a nonprofit. I also know there will be more rejection ahead. More unanswered emails. More failed applications. More ideas that do not work the way I hoped they would. But I also believe deeply in what we are trying to create: practical, compassionate support that helps make cancer treatment feel less overwhelming for patients, caregivers, and oncology nurses.

Nurses trying to create change should expect resistance. Not because ideas lack value, but because health care systems are complex and meaningful change often moves slowly. Learning to separate rejection from worth, adapting when needed, and continuing to show up anyway may be one of the most important skills advocacy work teaches us.

I am still learning that.

But for now, I keep showing up.

Sometimes with grant applications.

Sometimes with raffle baskets.

Sometimes standing outside a store holding flyers.

Some goals are still worth pursuing anyway.

Courtney Desy, BSN, RN, OCN, is an oncology infusion nurse. She cares for adults receiving chemotherapy and immunotherapy and is the founder of the Stronger Than Chemo Foundation, a nonprofit focused on improving patient education and support during cancer care. Her previous posts for this blog can be found here. 

Author’s note: Because this article touches on the human side of advocacy and creating change, we also created a practical resource page about lessons learned starting a nonprofit at strongerthanchemo.org.