Today I explore the power of sharing your unique experiences and the importance of embracing self-worth. And try to remember in my life what I continually say to others: Your story matters.
Your Story Matters
On my podcast I talk about my rare disease, PKU, from time to time. But I don’t always talk about my experience with it. At least, not in detail. And I’ve said that’s because increasingly there are diverse experiences in this community.
Some are on restricted, low-protein diets, some can eat much more protein, and some can eat unrestricted. Treatment for PKU is advancing, but not everyone responds to the various treatments currently available. So, there are now pockets in our community where daily life looks very different.
All of that is true.
But there is another reason I haven’t shared about my daily life with PKU very much. At least, not recently. And that’s a deep-seated reason.
But first, for those who have another rare disease and might not be familiar with PKU… here’s a quick recap of what it’s all about.
PKU, or phenylketonuria, is an inherited metabolic disorder that’s caused by a faulty enzyme in our liver. That enzyme processes the amino acid phenylalanine, and for years the only treatment was a low-protein diet combined with a medical drink full of nutrients we can’t consume in natural food. Those protein restrictions can range from 1 to 4 grams of protein per day on the low end to 20 or even higher for those with milder cases. And everything in between.
But over the years newer treatments have emerged. One comes in pill form and allows for some to eat more protein. But its effectiveness varies for each individual. There’s another one that’s a daily injection and those who take it can eat unrestricted, regular diets. But since it causes an allergic reaction in some who try it, not everyone can take it.
There are newer treatments in various stages of development that also show promise. But the result of all of this is that there is no longer one form of treatment for PKU, no longer one reality of daily life with this rare disease.
The Instagram post below inspired this episode. It’s about my experience with Kuvan, or sapropterin, which allows me to eat 50 grams of natural protein per day.
But what about my experience? And why don’t I talk about it?
Well, I’m trying to do more of that these days, especially on social media. I used to share my daily life with PKU. All of the time.
But I stopped. Years ago.
You see, I started sharing my PKU experiences on Facebook in 2012. At the time there weren’t many PKU pages. My short film “My PKU Life” had taken off on YouTube and was being shared a lot on social media. And so I began to use social media for PKU advocacy.
But, at the time, that daily injection that allows some to eat unrestricted… it wasn’t available yet. So, if you could eat 50 or more grams of protein as part of your PKU treatment that was very unusual.
I shared about those experiences. About what it was like to go from eating a restricted protein diet to eating almost anything you wanted. I still don’t eat meat, but I can eat eggs, dairy, nuts, pasta, bread, and so many other foods I couldn’t eat growing up.
And while many of the comments were encouraging and supportive, some of them either expressed jealousy, couldn’t believe that I could eat that much protein and still be considered “on diet”, or were otherwise critical. Some just couldn’t relate.
And so, over time my posts became more about other things going on in the community than just my daily PKU routines.
And then, a few years ago, one conversation in particular truly discouraged me. I had posted on social media about some struggles I was having following my treatment, and it got back to me that some people were saying I had “gone off diet”.
I felt so judged and shamed.
I had been vulnerable and admitted that I was having a hard time. And the response I received was an expectation of perfection.
And so, I shut down.
Just being real, this one of the many reasons I disappeared from social media for a few years.
I wasn’t sure that I wanted to put myself out there anymore and show the world one example of living with PKU.
Social media is great for rare disease advocacy. It’s the primary way I’ve met so many across the world. Seriously, I’ve had thousands of people reach out to me over the years, whether through social media, emails, or YouTube comments. And it’s been amazing.
Over the years posting about daily life with PKU or any other rare disease has become so much more common. It’s one of the reasons I love Instagram in particular now. There is a positive, encouraging community where we all share about this unique life we have and we receive encouragement from others in the community.
But it can also be a place where we put these expectations of perfection on others, and ourselves.
Over time I stopped being the most authentic version of myself. I stopped sharing my experiences because I didn’t think they mattered anymore. And, since I’ve been in broadcasting for so long, I can hide on camera, or behind a microphone. I adopt a more polished persona that’s authentically me, but just one side of me.
Maybe you listen to this, hear me share my thoughts and experiences, and think that this is something I enjoy.
I enjoy storytelling, absolutely. But opening up about my life? Being vulnerable? Sharing what I really think and feel?
I have to push myself to do that all of the time.
To overcome my fear. To face myself. To evolve.
And so, this is my next big leap. To try to share more of my daily experiences with rare disease life. To show you one path for living with PKU. And to continue to meditate on what all of this means for living a balanced life, focused on having a positive sense of self-worth and maintaining your mental health.
So much of what we see in life, whether in traditional media or on social media, is presented to us as solutions to problems or answers to questions.
But all I’m trying to do with this podcast is to get you to think about your rare disease life, and to ask different questions.
And to never forget that holding ourselves to impossible standards, of believing the lie of perfectionism, is only a path to inner turmoil.
So, let’s judge each other less, encourage each other more, and focus on what truly unites us… our need for hope.
There’s something I say frequently: “Your story matters”. I say it over and over and over. Not because I feel like I’ve learned something that I’m trying to share. But because I’m trying to remember it myself.
Your story matters.
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