15 years ago I released my first PKU project. I never imagined the day would come when I would need to assert my boundaries this firmly.
As I write this, it’s been a few months since I had a security incident at my home. For personal security reasons, I’m not going to share more details than I already have on social media because I don’t want to encourage similar behavior in the future. But it was unwanted attention because of my visibility in the PKU community.
I’ve been reluctant to talk about this because I’m not seeking pity. I do not want to complain about being successful with my advocacy work. The past 15 years have been an experience I never imagined possible as I have traveled the world telling stories for the PKU community. But unspoken for most of that time is the cost it has incurred, on both me and my family.
I’ve said frequently that people suffer in silence because they feel alone and misunderstood. I say that because I know the feeling.
So, I’m sharing this because I’ve been suffering in silence for many years. And I need to get this off my chest.
I’m speaking up now as a warning for anyone out there who becomes visible in the PKU, newborn screening, or rare disease communities.
I shared this reel shortly after the incident.
View this post on Instagram
Just being real… I’m still shaken. Boundaries Exist for a Reason: The Hidden Cost of PKU Advocacy – PKU Journal
This recent incident shook me deeply. I posted that reel shortly after it happened, and I was still processing everything in real-time. Since then, I’ve been on edge. Hypervigilant.
I haven’t felt safe.
I can’t sleep. In fact, as I sit here working on this article, it’s late and I’m alternating between drinking PKU formula and coffee. Just finished a formula. Time for another cup of coffee. Then another formula. Then another coffee.
I’ve been coping by throwing myself into my job. Anything to get away from the PKU advocacy spotlight. I just finished working on one story about a woman who received brain surgery to treat her epilepsy. And another one about a man who was electrocuted on the job. Sifting through graphic photos of burn injuries is never fun, but it’s part of the job. Soon, I’ll be at it again, working on a new story about a woman who received chemical burns after being the victim of a crime.
Why do I share that? Because I’m just trying to remind you… We all have things going on in life unrelated to PKU advocacy. In my case, my job is very demanding, mentally and emotionally draining. And, over the past two years, I’ve lost numerous family members and have endured multiple traumas.
Having to deal with all of this in addition to the stress of being a public person in the PKU community… It’s a lot to deal with.
