I’ve been exploring the relationship between rare disease life and mental health for the last few years. I may be a rare disease advocate, but I am also someone living with PKU. And understanding the relationship between PKU and mental health is my top concern. But this story is going to approach it from a different angle. It is a reflection on the burdens of advocacy. My advice to rare disease advocates—realize that self-care is advocacy.
Self-Care is Advocacy: Advice to Rare Disease Advocates
Stillness is the path to wisdom.
That’s something I’ve been trying to learn recently. It’s how I begin my day. And I begin my day early.
I have a routine. There’s a Starbucks in my neighborhood, and I’m there at 5 AM. Every morning. They know my name. They know my order (just coffee and water for me). I have a favorite spot.
And every morning…
I sit.
I read.
I meditate.
I write in my journal.
This is just the latest form of something I’ve been doing for over 20 years. Before the day gets away from me, I dedicate some time to stillness.
Well, I’ve spent the last few months in relative solitude. In late 2025 I wrote an article called “Help and Move On: A Philosophy for PKU Advocacy”. I had plans for more stories. I had plans for this site. I had plans for my advocacy. But then, life happened.
And I simply had to lay everything aside.
But every day, I would wake up early. I would be at Starbucks by 5 AM.
I would sit.
I would read.
I would meditate.
I would write in my journal.
And in that season of reflection, I realized something…
I’ve got to change.
Why is Self-Care So Hard?
I have a confession to make here.
I write what I need to hear the most.
I write about hope because I need a reminder to keep hope during my darkest days.
I write about shame because I was ashamed of my rare disease when I was growing up.
I write about friendship because my friends are the most precious thing in the world to me.
I write about heroism because I have seen real heroes up close in my career. One was a friend who died in the line of duty. And I am trying to remember that heroes are real, no matter what the cynics in society may say.
I write inspirational stories about historical figures, such as Mary and Sheila Jones, Dr. Robert Guthrie, and even World War II hero Major Richard Winters, because I need to remember that it is not the “great leaders of history” alone who change the world, but ordinary people like you and me.
When I write something, it helps me process what I think about it. I publish it because I want to share what I have discovered.
But I write for the discovery process itself. It’s a feedback loop that has become an essential part of the way I view and process the world around me. And I am writing this article on self-care because, to be blunt…
It’s not one of my strengths. I over-analyze. I over-communicate. I over-commit. And then I burn out. That’s my pattern.
Seriously… Why is self-care so hard for so many of us? I talk with a lot of people in the PKU community around the world. And I’m hearing the same thing over and over again—rare disease advocates need mental health support.
This is going to sound like a complaint, and I don’t mean for it to come across that way. This is friendly advice to those who want to step into the world of advocacy. It’s a warning to those who want to put themselves out there in a public way.
It is exhausting.
The Burdens of Rare Disease Advocacy
Let me take a moment and introduce you to someone. Richard is from the United Kingdom, has PKU, is known on Instagram for his focus on PKU and fitness, and has a YouTube channel. He also attends events, sharing his story and encouraging others. We met on Instagram, chatted a bit, and then were able to meet in person at the 2023 ESPKU conference in Birmingham, UK.
PKU Advocates Richard Farquhar and Kevin Alexander, standing at a beach in Porto, Portugal in 2024. They both attended the European Society for PKU and Allied Disorders Treated as Phenylketonuria (ESPKU) Conference held in the city earlier that week.
We talk a lot. We share ideas, support each other’s work, and just chat about life.
He is my friend.
And we often chat about the mental health burden of being a PKU advocate. He recently posted some great thoughts about this on Instagram.
I love that perspective. Yes, it can be heavy when you put yourself out there, because you hear a lot of stories that you don’t know how to respond to. People share their burdens, and tell you deeply personal things about their lives.
I’m not exaggerating here.
People share their stories about children who have died, from causes unrelated to rare disease life. They are just hurting and need someone to speak to.
They share about babies who didn’t receive newborn screening. Some who suffer because of a delayed diagnosis. Some who have died.
Or they beg for help because they can’t get their medications, and don’t know what to do. They are desperate.
Some are terrified parents who don’t know what to feed their kids with a metabolic disorder.
Others share about how they are enduring war, and the memories of those they’ve lost.
I’ve even had someone reach out the morning she lost her spouse.
They pour their hearts out. Not just about PKU. But about life.
My friends, I’ve produced a lot of stories over the last 14 years of my advocacy journey. But there is no way I could ever share all of the stories I’ve heard.
There is so much pain. So much heartache. So much grief. So much trauma.
And when you are visible in this community… They bring it to you. And you do your best to respond. But it’s hard to know what to say.
After Richard tagged me in that post I responded with this reel.
Mental Health Support for Rare Disease Advocates
This is why I say that we simply have to do a better job of supporting our rare disease advocates.
I speak most frequently with those affected by PKU. But I also speak with others across the rare disease community.
And we are hurting.
But these are not the issues we feel comfortable addressing in more formal advocacy environments. In my experience, advocates reserve these discussions for private conversations.
Whatever the reasons for that, we need to create opportunities, even in small group environments, for advocates to get together and talk with one another.
We need dedicated psychological support, even if that’s just a clinician who can provide advice from time to time.
We need to talk about the real issues we are all facing.
We cannot just ignore reality. That is a recipe for disaster.
I mean, let’s get real here.
The danger of talking openly about mental health is that you risk people thinking you’re asking for pity. That you’re seeking attention.
I get it.
When I opened up about my mental health story a few years ago, and created this website, I was terrified for that very reason.
But here’s the thing… If we don’t talk about this stuff, then nothing changes.
People suffer in silence because they have no one to talk to. Because they feel completely isolated in this life.
That is the most common theme out of all of my conversations with people in the community over the years.
People feel alone, misunderstood, used, judged, and condemned.
Sometimes by friends, sometimes by family members, and sometimes by people in the PKU community.
Is this anecdotal? Yes. But it’s based on my personal conversations with thousands of people in the PKU community over the years. I am still a journalist at heart. That’s how I began my career, and that’s how I’ve approached my advocacy work all these years. I try to tell you what I’m seeing, what I’m hearing, and give you reliable information.
That part of my advocacy work is public, and it matters to me. But the work I do in private—which is simply talking to people—is just as important.
And that work is based on a very simple idea…
People in this world are hurting, they just want someone to show them basic kindness, and if you make time for them you can have an impact on their lives that you can’t possibly understand.
My Advice to Other Rare Disease Advocates
OK, now let’s get practical. How do you deal with all of this? How do you balance the demands of advocacy with mental health and self-care?
1. We have to face reality. We cannot do everything. So we must learn to say, “No.”
Every rare disease advocate I know is stressed. We all care deeply about advocacy, because we realize that it is ultimately not about brands or campaigns.
We are dealing with people’s lives.
And those of us with a measure of visibility or leadership carry those people with us, whether we realize it or not.
But none of us are just dealing with rare disease advocacy. We are dealing with the daily realities of living with a rare disease. We are dealing with life itself. Life is messy. Life is hard.
And we have to set boundaries. There will always be a demand for more. More sharing, more giving, more service.
People will always want more from us. We have to learn to say when we can’t give anymore, or when we have to stop entirely.
Sometimes the best we can do is try to make it through the day. And that’s OK. We have to advocate for ourselves. And learn to say what we need as well.
And this is not my strength. A couple of years ago, I literally broke my leg while on the phone trying to give advice to someone with PKU. I was trying to do too much at once, became distracted while going too fast, fell hard, and broke my leg.
Did I learn from that experience? No. No, I did not. Pretty soon I was back to my pattern of pushing myself too hard. I still don’t have the energy I used to have and that knee still hurts. Constantly.
That mistake will remain with me. Don’t make the same choice. Face reality. Be honest about what you can and can’t do.
2. We need to create opportunities and environments for support.
In broader society, we have support groups for so many contemporary struggles. Grief. Trauma. Addiction.
Why not one for rare disease advocates?
I don’t mean yet another committee, or focus group, or planning session. Those are all important, obviously. It’s how we get things done in organizations.
But I mean a support group for advocates who are struggling with the demands of advocacy itself.
Rare disease advocates need mental health support. We can’t help everyone, we don’t always know what to say, and we can’t participate in everything offered to us. We just want to help people. And when we can’t, it eats us alive inside because we know how hard life can be.
Now, of course seeing a therapist is an option. I highly support that. Therapy has helped me in general, and it’s also helped me cope with the pressures of advocacy.
But I’m thinking specifically about peer support. An opportunity for people who are deeply invested in advocacy to get the help they need, and to help one another. Ideally under the guidance of a mental health professional.
3. We need to take care of ourselves first so we can support those we serve.
This is something we know intellectually, but not in our hearts.
Seriously. It’s a cliche. I know it. You know it.
But why don’t we actually practice it?
I think it’s because we feel a sense of responsibility to others. And we don’t want to let them down.
Let’s be real. None of us have to do this work. I don’t. You don’t. We could choose to do something else with our lives. If we’re volunteers, we could let someone else step up and serve. If we’re advocacy professionals, we could choose another line of work. If we’re in the medical industry, we could choose another specialty. If we’re in industry, we could go into another business.
None of us have to do this. We choose to do this. And I choose to believe that, deep down, we want to do our part to change things. So we keep showing up, we keep volunteering, we keep working.
But we have to pace ourselves. Or we will burn out. That’s just how life is.
And life is going to happen to us all. No matter your plans for your life or career, I promise you… Something is going to come along and disrupt those plans.
Your next big idea won’t take off like you thought it would.
You will fail at something you pour yourself into.
Someone will oppose you. (Let’s be real, and not naive. That is going to happen. A lot.)
And let’s not forget about harsher realities… Someone you love will die. Your heart will be broken. You’ll go through a traumatic event that you’ll never be able to share, never be able to explain.
And you will have to face the most brutal truth of all…
We are not in control. I’m not. You’re not.
Life happens to us all. And it will remind you of what matters most—the people you love.
Life is not a branded experience to be managed and controlled. It is a reality to be confronted. And the mental health burden of rare disease advocacy is a reality we cannot ignore.
We cannot ignore our fellow advocates.
We cannot ignore each other.
And we cannot ignore ourselves.
We simply must learn to take care of ourselves so that we can take care of those we love.
Stillness is the Path to Wisdom
I began this article by sharing my morning routine. My habit of stillness. It’s been a companion of mine for many years.
Well, these days I am trying something new. I am choosing to end my day in stillness as well. I’m shutting the TV off earlier and heading into my study. Some nights I listen to music. Most nights I play guitar for a few minutes.
But every night I am trying to end the day how I began.
I am trying to sit.
I am trying to read.
I am trying to meditate.
I am trying to write in my journal.
I am seeking a different way of life.
In these moments, I am no longer fighting. I am not trying to speak for anyone else. And I am not trying to convince anyone of anything.
I am just trying to live a peaceful life.
I am learning to quietly advocate for myself.
If you would like to explore this topic further, check out this story that I produced for my podcast. You can listen above or read the article here on this site: “The Emotional Toll of Rare Disease Advocacy.” It was the first time I explored this issue publicly. And I’m going to keep talking about it.
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