I Don’t Need to Be the Loudest Advocate

Lessons on Cancer Advocacy Collaboration

You hang up from a peer support call, and you know the person on the other end needs more than you can give. Maybe they need gas money to get to treatment. Or maybe they need someone who went through the same surgery. You don’t have it, but you know a group that does. So you send them the link and check on them a week later.

That’s what real help looks like to me. It also sums up the biggest lesson I learned about cancer advocacy collaboration this year. I don’t need to be the loudest advocate in the room. I want to be the one you come to when you need real help, even when that help lives somewhere else.

Why Advocates End Up Competing

When I got into advocacy, I expected everyone to be on the same team. After all, we want the same thing. We want awareness for patients and support for the people who love them. Instead, I kept noticing advocates and groups trying to outdo each other. Everyone wanted to be bigger or louder than the next one.

It felt odd, so I started asking why. From what I’ve seen, it usually comes down to a few pressures:

Money. Groups compete for the same grants, sponsors, and donors. When funding feels scarce, people guard their turf.
Platform numbers. Social media rewards whoever posts the most. Paid speaking spots and brand deals often go to the biggest follower counts.
Recognition. For a lot of us, advocacy gives cancer a purpose. That’s a good thing, but “our cause” can slowly turn into “my cause.”
Founder pride. Some people start a group to fill a gap. Later, they struggle to share credit with anyone doing similar work.

Most people in this space mean well. The system just rewards being seen over being useful.

When “Helping” Turns Into Something Else

You know pink-washing, a company sells a pink product in October, and little or none of the money reaches breast cancer patients. Some people start a vanity nonprofit, built mainly to pay the founder while volunteers do the real work. The IRS says a nonprofit can’t be run to benefit its creator, but that line gets blurry from the outside. Some for-profit companies promise to help patients, but the real business is data harvesting, collecting and selling your health information. The FTC has already taken action against a health company for sharing users’ health details with advertisers.

Advocacy can slide into the same trap. The posts get bigger and the logos multiply, but patients still can’t find a ride or a support group near them. I call it advocate-washing. Researchers have a related name for when organizations include patients for show, called tokenism. When you’re new to the advocacy community, you’re eager to help, so watch for scams and “opportunities” that take advantage of that willingness. Watch for groups that rush you with flattery and urgency to sign up. If you slow down to vet them and they suddenly stop reaching out, that tells you they wanted free labor more than they wanted you.

I mention these scenarios because I almost fell victim to them myself, but my gut kept bringing me back to real patients’ needs. Patients want to see themselves represented and they also want practical help when life falls apart. If our work doesn’t reach them, we need to ask why and then how are we going to structure our advocacy work.

All the Ways You Can Advocate

Advocacy comes in every size. Here’s how I see it, from smallest to biggest:

For yourself. Asking questions, getting a second opinion, and pushing back when something feels off.
For one person. A ride to treatment, a meal, or a text on scan day, or even a gentle smile to someone wearing a cancer shirt.
Passing it on. Sharing a resource or pointing someone to the right group, or simply telling your own experience. Either or both in person or online.
Peer support. Mentor programs, one-on-one calls, and in-person or virtual support groups.
Building community. Running groups, organizing walks, and fundraising.
Public voice. Use your patient experience for social media, articles, panels, studies and interviews. (this is where paid opportunities are revealed)
Changing systems. Research panels, patient advisory boards, lobbying at Congress, and policy work.
Running an organization. Nonprofits and foundations with staff, budgets, and brands. Always keep the patient focus centered.

You can do any of these, as much as you feel comfortable, but do not feel pressured to do them all. A small effort can carry someone further than you think and at any time. You never know who will see or hear about your advocacy work or who will benefit from it in the future.

Where Comparing Starts

At the small end, you can see the help in nearly real-time. Someone got a ride, you helped ease a patients anxiety, or a caregiver found a grant or got the right appointment. The feedback is a real person expressing gratitude and you get all the feels of helping a fellow survivor.

As you move up, your audience grows, but the feedback gets fuzzy. You can’t always see who got helped. So people start counting stand-ins instead, like followers, views, certificates, and dollars raised. Competition starts when the stand-in replaces the person.

In my experience, it showed up right in the middle, around building community and public voice. That’s where you first get an audience and a name. From there, being seen and being useful can drift apart without anyone noticing. I almost slipped into that trap myself. I started to feel competitive, like I had to be everywhere and know everyone. So I showed up to every Zoom call and meeting I could find. I thought more training would make me better at peer support and help me get my foot in the door with other organizations.

Looking back, none of it made the difference I expected. I had been doing peer support for years before I even knew it had a name. All I need is to be a friend with a listening ear, tell my own experience and keep a good list of resources on hand.

Quick Tests for Cancer Advocacy Collaboration

Before you join forces with anyone, or when you check in on yourself, ask:

Would you send someone to another group if they’d get better help there?
Do you share credit and share the stage?
Can you name who you helped this month, or only how many people saw your post?
Where does the money land, and can you say it out loud? Some organizations and businesses aren’t open about where the money goes.

If the honest answers make you squirm, that’s your sign to collaborate instead of compete.

The Shop Question and the Influencer Question

When I was first starting treatment, I opened an online retail shop as a way to cope, keep my mind distracted, and to help support myself while dealing with cancer. A lot of patients author books or start a small business. Selling something to keep your lights on during treatment is honest work because of the begging scams. A lot of people, like myself, felt uncomfortable asking for help, and wanted to find a way to honestly earn money. Sometimes I get paid to share my voice and opinions, and I’m grateful for that. However, the line gets crossed when the illness becomes the sales pitch. It also gets crossed when people think their money goes to patients and it doesn’t. Being transparent about where the money goes keeps you on the right side.

Then there’s the influencer question. Do I even want to be one? I’m still figuring out what kind of influencer I want to be. Still, there’s a lot of pressure to say the right thing and chase more views. My posts reach people I’ll never meet, and some of them message me months later to say a post helped. But a post can’t sit with someone in a waiting room. Being a friend who cares is still the heart of this work.

Go Slow with Advocate Partnerships

I learned this one the hard way. When you meet an advocate you click with, it’s tempting to jump in fast. Please don’t, and learn from my mistakes. I put my own money and months of planning and marketing into a collaboration I believed in and I thought it was going great. Then one heated reaction against me turned into ongoing public criticism and claims that weren’t true. The trust was gone, and the part that stung was losing what I thought was a real friendship. It hurt, but it also cleared the way for something bigger that will reach more people in my community. Now I have a plan and the confidence to lead in a way people can count on and not have to tip-toe around someone’s broken egg shells.

Not everyone shares your reasons for doing this work. Jealousy or guilt can trigger someone’s ego, and that can harm a project that was helping people. So be careful with any partnership that costs you money and energy.

Get It in Writing

If you enter an official long-term collaboration, put everything in writing. Spell out:

Who does which tasks
Who pays for what
Who owns the name, the website, and any donations
What happens if someone wants out

Clear terms protect everyone even if they seem insignificant. They also keep anyone from muddying the waters later. Keep in mind that people new to advocacy or business often don’t know how professional agreements work. Putting it in writing helps you both start on the same page. Looking back, that was my mistake and misfortune of not getting things in writing and a big lesson learned.

Protect Your Health First

Sometimes the other person contributes very little. You end up doing most of the heavy lifting and then take the hit to avoid conflict. That kind of stress can turn toxic, and sometimes even abusive. A partnership should be equal, but when it becomes unbalanced, someone will end up paying the emotional cost. Nothing justifies how negatively they treat you. Remember, it is just a partnership, and you have the right to simply walk away from it.

I’ve been reminded that if things do go wrong, keep your dignity and don’t lash out. Keep a professional distance with everyone, so if something goes south, you save face and leave room for better opportunities. Skip the rant posts as sometimes your silence says more than any post ever could, and the people who know the truth will notice how you carried yourself. Don’t spread rumors, assumptions, or lies. If the stress starts affecting your sleep or health, talk with your doctor or a counselor.

Instead, grieve the loss and keep going with why you started advocating in the first place. Getting burned doesn’t mean you give up on your goal to advocate. Move on with your vision of being an amazing advocate for others.

Good Partnerships Do Exist

I’ve had wonderful experiences with organizations and advocates too. Right now, I’m planning a cancer walk in my area with a fellow advocate who has run his own support group for years. We both have wanted this walk for a long time but doing it alone was overwhelming. Now we have each other and makes the load seem feasible. We could have treated each other as competition. Instead, we split the work, share the credit and that’s what a good partnership feels like.

You don’t need to connect with everyone that comes along, and you don’t have to do it all. Pick the people and groups who share your reasons for showing up. That’s what cancer advocacy collaboration looks like to me, and it’s how I want to keep doing this work.

Want more lessons from this year? Come back to read my article on Volunteering for Cancer Organizations next week.