People always ask: ‘What happens when you eat protein?’
When I try to explain PKU to someone for the first time, I almost always get the same reaction—shock, confusion and the immediate question: “…but what happens to you if you DO eat too much protein?”
Unfortunately, i have too much experience in this area. But comparing phe intolerance to an allergy is misleading. People usually imagine reactions like hives, stomach ache, or even something as extreme as anaphylactic shock. But the real answer to their question is also the scariest and most difficult to explain: I don’t know. ...I don’t know what has happened to me as a result of eating too much protein and may never truly understand the extent of the damage I inflicted upon myself.
Sure, I’ve had my fair share of ‘cheater meals’ and know the immediate effects of protein overdose—at least for me. I get tired, slow down, and may even speak a little differently. But those reactions aren’t any worse than having a few too many drinks, so people tend to think, “So what?” (And truthfully, if that were it, I might be sitting down to a sushi dinner right now)
But the long-term and cumulative effects of high phe levels (aka too much protein) are unknown and variable. I was one of the lucky ones; I spent twelve years disobeying the PKU diet and so far, my consequences have been fairly mild. But I have felt a mental decline. It’s totally undetectable to others; I am articulate, perform well at a challenging job, and made it through college (the peak of my ‘cheater years’) with honors. But beneath the surface, I struggle.
The most common symptom of unmanaged PKU is described as a “mental fog” and it’s a very real thing. It’s most obvious during prolonged periods of poor diet and does improve with better choices, but it also never fully fades. To me, it feels like a permanent haze. And to make matters worse, when you’re off-diet this cloudiness becomes normal. It has to get really bad before you even realize you’re in lost in a stupor.
My friends, family, coworkers—even my husband—are surprised when I describe the fact that I still struggle, but put simply, I just don’t (physically can’t) think as clearly as I once did. I may speak intelligently, but I also struggle for words that once came easily. I often get distracted from my train of thought, and lose time rethinking things for sake of clarity. It’s extremely frustrating.
“Put simply, I just don’t (physically can’t) think as clearly as I once did. I may speak intelligently, but I also struggle for words that once came easily.”
Worse still is the toll that PKU has taken on my memory. I can’t define it as short-term or long-term loss, but have trouble recalling details both past and present. If I don’t take pictures or repeatedly recount an experience, I usually don’t remember it in detail. If I watch a movie, I can re-watch it just a few weeks later as if for the first time. I take detailed notes at work as a necessity, and interpersonally, struggle to remember conversations. Friends joke it is a symptom of my age (32- oh my!) but I know it’s more than that.
The scariest symptom of unmanaged PKU is one that I haven’t noticed explicitly in myself, but has recently sent me down a path of analysis, recounting years past as if I now have a better lens to interpret them. Many people report personality changes with high phe levels, ranging from being moody, anxious, reactive, impetuous, and brash to experiencing fits of rage, struggling to maintain relationships or even to keep a job. And while I don’t believe I fall on the extreme end of that spectrum, I am aware of the ‘dark’ parts of my own personality and often think back to life’s most difficult years, wondering how much my disorder (and negligent choices) contributed. I have no doubt they were a factor in those trials and tribulations and at times, negatively impacted the people in my life as well.
When I went back on diet, all of my symptoms improved quickly, but they still linger. I’m not confident they’ll ever fully dissipate, but hope that my commitment to PKU will stop them from worsening, if not elicit improvement. (I have read multiple case studies to suggest that new neurological symptoms can arise even after going back on diet…but I try not to think about that.)
The worst thing about it is not knowing the extent of the brain damage I inflicted upon myself, or what may have been if I had never faltered. Did I reach my full potential? Would my life and memories have been more vivid? How were my relationships affected?….would I have been better at math!? I am flooded with questions that will never be answered.
Without some sort of violent, visible reaction to protein, the PKU diet is difficult for outsiders (even friends) to understand. Not too long ago, it was difficult for me, too. I really only became aware of the effects after going back on diet and feeling the clouds lift. If I could hit rewind, I know I would live (and eat) differently, with my future happiness and success at stake.
As an adult, the PKU diet is a choice. And like I said, I was one of the lucky ones. Others with my history have fared far worse and will forever battle mental and physical handicaps as a result.
There is nothing more precious than your mind or more painful than the clarity that comes with hindsight.
I wish I could go back and answer this common question with the confidence and resolute determination I only found in my late twenties. What happens if you eat too much protein? ...I truly hope today's PKU kiddos don't roll the dice to find out, so unlike me, they can respond "I don't know" with pride instead of fear.