Carmen Monge-Montero, Researcher and Global Cancer Advocate, shared a post on LinkedIn:
“This is something I’ve been thinking about for a long time (+12 years of survivorship), and I actually wrote this piece at the beginning of the year, but I was afraid to show it to the world because of the consequences it might bring. But after it’s been reviewed by many other young patient advocates around the world with different illnesses, I feel it’s time to share it more openly, and see if this is something you also identify with / that resonates in your community.
In many trainings of Patient Advocacy that I have taken in the U.S., Latam, Europe, Australia, we’re told that patient advocates are valuable and needed and that we can even build a career in this space. When you have lived experience, your way of seeing the illness/treatment is especially valuable. For young people affected by cancer or any other disease (especially those who have faced financial difficulties or are in a career limbo), that sounds like a real opportunity; this is the case of many people who write to me asking how they can live with this.
Sadly, I know very few people who actually live from this or lead them to a established career, and the majority are not exactly young people. The very market that asks for your contributions doesn’t show much appreciation. Here’s my experience and my personal opinion that young patient advocates might wish to consider:
1. Many organizations rely on free work from young advocates.
They use our stories, time, images, networks, and sometimes don’t even ask for proper consent. Because young people are looking for opportunities, we’re often told to “volunteer” or “help the cause” without recognition. Calling us advocates, members, ambassadors or any new catchy names to put our face on a campaign. But, as a patient advocate, you cannot demand anything or really do anything for the people who ask you for help. One thing is doing volunteer work because we feel like it, and another one is to take advantage of the opportunities the industry offers and the paid “good cause”.
2. Patient Advocates with a lived experience are sometimes treated as replaceable.
This is a hard truth. If your only value as a patient advocate is your own story and it has been used, no longer fits the narrative, or you were demanding a different treatment or compensation, they move on. And you’re left feeling used without an explanation, many times giving your medical records and sensitive information. There is not a regulation to prevent this from happening, they are not real contracts and nobody that keeps this from happening.
Having the illness and giving your story (storytelling) is a good start, but if you want to keep working in this space there are many things to do, but first learn to listen to others and do research on how to back-up your narrative. There are many patient advocates that do not have the lived experience and do a lot in this field; imagine having the lived experience and being empathetic when you listen to other because you know a little how it was. The key is to know how to translate all this data and experiences to the researchers, politician, and the healthcare professionals.
3. Our time, experiences, and emotions are not always valued or cared.
I’ve been in meetings where young people were being vulnerable and the organizers weren’t really listening, sending emails or checking their phones. They just took what was useful for their post/videos and moved on without acknowledging the effort it took to be vulnerable.
It is difficult to be a patient advocate if you are a people pleaser, because you might encounter many people who will shut you down when you ask for a change in the system, or when you “complain too much” instead of being grateful, or when you say something you shouldn’t be discussing, or even when they feel you’re stealing someone else’s spotlight.
4. Many people talk on our behalf, but with our faces.
When, in fact, if we have the tools, we can speak loud and clear. But since we are young, our perception is often reshaped to fit someone else’s narrative.
I’ve been in many meetings where speakers or organizers without lived experience explain to people who have cancer what they need, and why they must speak, yet in the big meetings, they are still not at the table, even though many have the education, presence, and knowledge to be.
5. There is a fine line between ego and willingness to help in this business.
Sadly, I’m not innocent of this. It’s natural that after something horrible happens to you, like cancer, and you receive some attention, you start to crave more. Sometimes we (advocates, NGO founders, directors, etc) forget why we are really there.
But the truth is that in a fight of egos, little can be done. I’ve seen how hidden agendas, political rivalries, and ego clashes prevent good outcomes in projects and meetings. And it’s not only young people who struggle with this.
This is where it’s useful to take time to reflect on your contribution. If it’s only your story, without the willingness to listen to others, this might not be the place for you.
Why are young advocates with a lived experience especially affected by this?
Older advocates are often diagnosed later in life, after building a career. They may treat advocacy as a side project, or already know their value and have support systems in place.
But young people are often just at the beginning of their careers. We might still be studying, job hunting, or figuring out what’s next. That makes us more vulnerable free labor, for work that actually adds real value to research, networking, and patient-centred care.
So I ask organizations: What are the barriers to provide support, especially when you’re working for the community itself? I understand that money can be a challenge, but that’s not always what advocates are looking for.
I don’t think everything should be about money. But if an organization benefits from your time and story, they should offer something in return: training, a letter of reference, conference access, mentorship, contacts, authorship: something meaningful for the advocate.
Personally, I choose to work with organizations that may not have the budget, but I truly believe in their mission and the people behind it. They support me in other ways: through training opportunities, access to networks, or simply on my projects. They see us as people, not just a face for a campaign.
These reflections are a collection of experiences, not directed at any specific organization. I don’t want this to sound like criticism; I hope it becomes a starting point for more transparent, respectful collaboration between organizations and young advocates.
So here’s my message to those who work with young advocates:
Be honest about the challenges and opportunities. Recognize our value. And help us grow, not just be seen. I’d love to hear from others: Have you ever felt this way as a young advocate with a lived experience? What else would you add or change?
Carmen Monge.”
More posts featuring Carmen Monge-Montero on OncoDaily.