Shame and PKU. That’s something we don’t always talk about. Because as a society we tend to avoid discussions about mental health. This blog exists for one reason—to tear down that stigma.

Embracing your self-worth. Overcoming shame. Prioritizing mental health. I can’t say I have a full grasp of those issues. But it’s what I’m working on, day by day.

Confronting Your Emotions

Last month I shared my mental health story of working in journalism and my exposure to trauma. If you haven’t read that article yet, I’d suggest you read it first: Regaining Hope – My Mental Health Story. It’s long, much longer than I plan to write in the future. But that article reveals my reason for starting this blog. I plan to write about life, mental health, and PKU here, so I had to start by telling my mental health story. And it’s been quite a month. I’ve spent a lot of time asking myself how this all relates back to my PKU.

I keep a daily journal. It’s been a consistent part of my life since 2004. I worked on the morning show at the time, running live shots from 5-7 AM. I would often take the live truck and arrive at our location early so I could have time to write in my journal. If I needed to be there by 4 AM then I’d show up at 3:30 so I’d have a little extra time to write. I’ve kept that practice up ever since, although I don’t have to be at work at 3 AM anymore, thankfully. These days I’m up at 5 AM so I can have plenty of time to read, reflect on life, and write before the day gets away from me.

Over the last few weeks I’ve been exploring issues I’m dealing with, like trauma, grief, anger, and acceptance. I’ve been learning to accept the present moment, no matter what it is. If I’m sad, I embrace it. I don’t run from it anymore. If I’m angry, I write through it. Often it helps me see how I’m misperceiving a situation. Confronting these emotions is the only way I can move forward in life.

And I’ve been reflecting on what I want to explore with this blog. I had originally created a long list of ideas for articles, but the more I look at the list, the more I find something lacking. It’s like I’m trying to create a map of territory I haven’t explored yet.

Navigating Shame and PKU

As a general rule, our culture has long frowned on issues related to mental health. Tell someone you have a cold, and they’ll ask, “Did you see your doctor?” But tell someone you’re anxious or depressed, and they freeze. Why don’t we feel just as comfortable telling someone that we’re seeing a therapist as we do that we’re seeing our primary doctor?

Shame.

There is still this idea that if you need help with your mental health then there is something fundamentally wrong with you. Not that you have done something wrong. That leads to guilt. But that you are wrong. That’s shame.

There is still this idea that if you need help with your mental health then there is something fundamentally wrong with you. Not that you have done something wrong. That leads to guilt. But that you are wrong. That’s shame.

I wrote my first article in an attempt to be as authentic as I know how to be. If I’m writing a blog on mental health, I wanted to open up and share my story. I get that many aren’t comfortable with sharing their story. It’s personal. It’s private. And some things are best left in your journal. Trust me, I understand. I did the same. I gave you a glimpse of what I went through, and what I’m going through. But I didn’t tell you everything. Some memories are too dark and painful and will remain in my journal.

It’s ironic that writing about pain is itself a painful experience. You sit in a room, alone with your thoughts, and try to find a way to share them with the world. And with every word you write, you second-guess yourself.

“Is this too much? Is this too dark? Will it help anyone? What will they think of me now?”

It’s the feeling that your experience isn’t worth sharing because you aren’t worth sharing.
That’s the power of shame.

I’ve been reading about PTSD again, about how it messes with a person’s sense of identity. About how they often go from one thing to the next, never finishing one thing before they start another. Because they’re searching for an identity. Because they feel that who they are isn’t good enough. I get that.

But as I wrote in my journal, diving deeper into my past, and reaching a whole new level of self-awareness, I realized that I’ve felt that way… because of PKU.

Like there is something inherently wrong with me because I’m so unlike the rest of the world.

How many times have we all had that conversation?
“You have a rare disease? That’s too bad!”
You know, I’m not defective. I just can’t eat like you.
“You can’t eat meat! I couldn’t live like that! I would just die!”
Yep, I know. I’m still alive. It’s a medical mystery.
“You’re making that up!”
Sure. I made up the word Phenylketonuria. You got me. (This actually happened to me in middle school).

This world doesn’t tolerate differences well. If your life experience doesn’t match up with the norm, then you aren’t just different. Your experience is considered invalid, and you are treated as if you are wrong.

Am I the only one who has encountered people like that? I mean, if you only had a few similar encounters, maybe it wouldn’t get to you. But I’ve had countless conversations, interactions, and “friendships” over the years which were based on mandatory acceptance of whatever the norm is considered to be. It gets exhausting.

After a while, it affects your sense of self-worth. You start to think, “Maybe they’re right. Maybe I’m wrong.” And so begins the lifelong battle of navigating shame and PKU.

Overcoming Shame

But I am not wrong. And neither are you.

This is something I’m struggling to understand. I don’t mean an intellectual level of understanding. In my mind, I say that I’m not wrong. But in my actions, I reveal that I’m not there yet.

I still care too much about what other people think of me.

I get stuck in my head, on an endless loop, worrying that I’m not living up to other people’s expectations of me.

And I have a serious case of impostor syndrome. “One of these days everyone is going to realize that I don’t have it all together.”

But those are lies. All lies.

No one has the right to dictate my identity. I don’t need to seek validation from anyone, but rather commit myself to self-discovery. Chart my own path. Figure out who I am, and stop worrying about everyone else’s opinions of who I should be.

What other people expect of me doesn’t matter nearly as much as what I expect of myself. I can’t do everything, I can’t please everyone, and I can’t solve every problem. So why live as if it’s all up to me?

And that last one, about impostor syndrome… That’s the biggest reason I’m writing this blog. I’m forcing myself to open up, to share what I really think and feel, so that I stop believing the lie that I have to have it all together. I’m just someone on the journey of life, trying to figure out what that means, and fighting back against the voices in my head that tell me I’m not good enough. And to do that I have to keep thinking about shame and PKU.

Understanding Versus Caring

What we think we want is people who understand our life experiences. But that’s asking too much.
I can’t expect someone outside of our community to truly understand what it’s like to live with PKU… the daily grind of following the treatment, the battle for insurance coverage, the social isolation.

And I can’t expect anyone else to truly understand my life experiences… the adrenaline rush of breaking news, what it was like in New Orleans post-Hurricane Katrina, how you feel a bit of yourself chip away each day when you cover trauma.

I can’t expect others to understand those things. But I do want people in my life who care.

That’s what we all ultimately want… people in our lives who care about us.

People who treat us not as if we are wrong, but celebrate our differences and allow us to contribute our unique perspective to their lives.

So, what’s my plan for this blog? All I know is that I want to continue this conversation, this exploration of life, mental health, and PKU. I don’t know how to separate those topics out, neatly categorize them, and deal with them all in a straightforward, logical manner. It’s like asking, “What’s more important, breathing or your heartbeat?”

I’m going to keep thinking, writing in my journal, and sharing here. I don’t know how often, and I don’t have a set plan. I just want to reflect on life and tell you some stories. For now I’m going to keep navigating shame and PKU, and thinking about mental health in general.

I just want to explore.