Numbers May Not Lie, But They Don’t Always Tell The Whole Story
There is an algebra teacher in New York, long since eulogized, who is rolling over at the thought of me discoursing on anything vaguely related to numbers. She would not, however, be surprised to hear that I’m advocating we de-emphasize the importance numbers – at least when it comes to assessing our health. Medical testing provides critical information and results should never be ignored or dismissed. While numbers may not lie, they don’t necessarily tell the whole story or accurately reflect the true state of our wellbeing or how you feel. When it comes to evaluating our health and measuring our progress, we need to factor in a critical variable that labs can’t test for: our feelings.
Five years ago, I was experiencing a wide range of seemingly unconnected, non-specific symptoms and knew, deep-down in my aching bones and leaky gut, that something was wrong. Sound familiar? My doctor ran a partial thyroid panel. On paper, I was ‘normal.’ In reality, I was drowning. This happened several times. Only when my TSH levels blew out two years later did my numbers reflect my reality. Thanks to subsequent testing for antibodies, I got a diagnosis: Hashimoto’s.
I immediately embarked on the Autoimmune Paleo Protocol (AIP). I recently stumbled across the symptom tracker I created for myself on Day 1. It was my ‘before’ picture. (For a good general guide to tracking symptoms regardless of disease, go here; there are also now several tracking apps specific to Hashimoto’s.) I catalogued my symptoms (exhaustion, brain fog, joint pain, chills, rashes, weight gain, etc), assigning each one a rating on a scale of one to ten. The list was long and the scores were high – nearly all landed somewhere between five and ten.
One year later, on my first AIP anniversary, I took another snapshot: most symptoms scored four or lower. Year two sped by without a look in. But today, three years on, I filled it out again. Nearly every symptom was in the zero to two range. It’s the result of medication that’s been tweaked over years, diet and lifestyle changes, including therapy, that continue to evolve as my understanding of what works best for me grows, and a recalibration of my parameters. I choose how I spend my energy carefully. I say ‘no’ more often that I say ‘yes,’ even though I find that difficult. But I’m learning how to turn a Kate-ten into a Kate-two.
I have another tracker in my files – a neglected spreadsheet where, for a time, I diligently recorded all my blood work. The idea was to have all my results in a single place so that I and my doctors could see the big picture at a glance. Does anything make a conventional doctor question their career choice faster than the sight of a patient toting spreadsheets? In that data set, one number hasn’t changed. When diagnosed, my autoantibodies measured as ‘greater than 1,300’; three years later, they still do. The actual number remains a mystery, so I have no way of knowing whether they’ve gone up, down, or stayed static. On paper, I’m a mess. But in reality, I feel better than I have in years.
There’s another number I keep track of informally, intermittently, shamefully. My weight. Every ounce Hashimoto’s has gifted me appears here to stay. And as I round the corner on menopause, during a global pandemic in which sweet potato fries have played a starring role, I now outweigh my husband. But here’s the thing: I feel great. I used to be thin, sick, and sad. Now, I’m stout, hale, and fairly hearty. Since dieting of any kind (and I’ve tried them all) sends me into a flare, I have to choose: look good or feel good. I wish I could tell you that it didn’t feel like a tough choice – or a choice at all. But I’m a bad feminist who deserves to be carted off by the Body Positivity Police. I promise to go quietly. Chalk it up to fifty years of conditioning by a society that judges women on appearance. Learning to value how I feel over how I look is an ongoing struggle. I’m working on it. For now, I’m avoiding scales, trying to smile in the mirror, and buying bigger pants. Because, did I mention this? I feel great.
Trust Your Own Metrics
The internet abounds with hyperbole and false promises (surprise). Poorly served by conventional medicine, those of us within the autoimmune community can be especially vulnerable to stories of ‘cures’, remission, and recovery. When no one in a white coat is offering you hope – or even able to identify the source of your suffering – inspirational narratives can look like life-rafts. But they can also create pressure to ‘achieve’ remission, disease reversal, or declare oneself ‘cured’. In a furious quest for quantifiable results, we may risk losing sight of the bigger goal: true healing. What that looks like is different for each of us – and may not fit the broader narrative. My health isn’t a noun, it’s a verb – a fragile balancing act maintained through small, regular, necessary practices. It’s also subjective, unique, and evolving. What works for other people with other bodies doesn’t necessarily work for me. I feel well but I fail the autoantibody test. I look heavy, but my mood is light. I’ve reversed most of my symptoms but I’ll always have an autoimmune disease that requires management. My body has taken a detour and I have to chart my own path. So I’ve decided to stop trusting the numbers. And just trust myself. I encourage you to boldly do the same.