People can’t see my chronic migraines. Winter clothes do a good job of covering up bright red rashes and I keep my hands out of sight. Friends can see I’m unable to eat much in this season, and that one stings because they also know I’m a nutritionist.
I’m not the kind of sick that manifests like the common cold where my voice is raspy and nose is runny. This isn’t a broken bone that heals with the structure of a cast. This sickness hides in my genes, circulates my bloodstream, and sits in my organs.
This is the invisible kind of sick, it took six months to diagnose and it’s now part of my story. I didn’t think I would have to go through the wringer again with my own health to become educated on disease, but here I am, educated as ever.
We never know what someone battles with on the inside unless they tell us. This is a post that explores what invisible sickness has been like for me. I share my story with the hope that we can later support others in our life when we can’t see what ails them.
the devil on my shoulder
Invisible sickness brings peaks of feeling strong enough to say with conviction that I’ll heal from this season. The valleys, though, bring tears in the lows of thinking I’m untreatable. I’d imagine people bearing the invisible sicknesses of depression, panic attacks, or chronic disease understand this volatile cycle.
And it’s not that my life isn’t wonderful or that my community isn’t supportive. I’m actually happier and emotionally healthier than ever with a wildly supportive community. Some battles must simply run their course inside of us.
Invisible sickness has felt like there is a tiny devil sitting on my shoulder, trying to entice me to stop fighting by putting more obstacles in the way of healing. I’d like to strangle this devil’s voice that tests my willpower, faith, and habits of honesty daily.
the (slow) diagnosis process
Coming down with an invisible sickness happens quickly and without warning. Rarely does anyone see illness coming until it’s no longer preventive care we need, but rather, reactive.
I’m so lucky I can be my own health advocate. The number of times I’ve been told to “hang in there” by a medical professional since the accident that started this hot mess makes me clench my teeth. I’m at least well-versed at interpreting lab results after countless office visits, nerve-wracking tests, and unfortunate misdiagnoses.
The biggest obstacle to regaining a full bill of health is that there isn’t just one thing wrong I can isolate to treat. As of this week, I’ve been diagnosed with systemic dysfunctions that seem to all relate.
SIBO - small intestine bacteria overgrowth, likely from heavy antibiotic use as a kid and emergency abdominal surgery this summer
hyperoxaluria - abnormally high oxalates in the blood, comorbidity of genetic status and SIBO presence
compound heterozygous MTHFR - a genetic mutation that means I have roughly 30% utilization of folate (vitamin B9), heavily impairing systemic DNA synthesis and detoxification
dysbiosis - significant microbial imbalance in my GI tract, again, from antibiotics and surgery that contributes to my food intolerance and microbial imbalances
candida - an overgrowth of pathogenic yeast, also likely from antibiotic use and this is what I was misdiagnosed with a primary condition in July
I’ve been on months of herbal antimicrobials and prescribed supplements coupled with trying various carb- and starch-free diets like GAPS, anti-candida, and low-FODMAP. Back in July, carbs were pinpointed as making my rashes flare. Now, nearly everything I put in my body has the capacity to start a rash or migraine, even the blandest of chicken.
Not being able to eat most foods is embarrassing as a nutritionist. The biggest thing in my world to make a career now makes me sick, go figure. The approach to treatment of my diagnoses is not a matter of conventional vs. functional medicine, it’s a matter of what will work for me. Right now, that means continuing a restrictive low-FODMAP diet, supplements, and trying pharmaceuticals.
control is comfort
I can finally go about my days encouraged that healing is coming but I’m also learning that having control over my surroundings and body in this season is like crack cocaine. Control is easy to exert at home and that makes me so comfortable.
There are plenty of times I’ve avoided being social with a kind of sick that others can’t always see. It’s easier to stay home than try to make accommodations for my health, especially when it involves eating food I can’t control. It doesn’t make me bitter, but it’s tough feel left out all the time. This season has made date nights virtually nonexistent, travel is a hassle, and holidays have been tough.
The low-FODMAP diet has been controlling my symptoms, thankfully. But, it also has zero margin for error if I don’t want a migraine that puts me in back in bed by midmorning. It probably looks like I have an eating disorder to people who don’t get that, but frankly I can’t wear a sign explaining that this season calls for control so I can simply function.
relationship in sickness
Undoubtedly the best quality brought out in me this year was the capacity to show emotions more openly. I cried and verbally processed more this year than I did in my twenty-three years combined. Slowly but surely, I began to see the space of emotional safety built in my Denver community. I genuinely feared the implications of an invisible sickness would ruin the connections I had been trying to build.
Ironically, my relationships feel stronger than ever now. Nothing stopped when I kept fighting for connection and saying where I was at even when it wasn’t good. I frequently fumble using my honest voice because frankly, my uncontrollable health has been a burden no matter how much my loved ones tell me otherwise. Bringing my whole self, even at my worst, has been mortifying at times. I’m fairly certain this year has been God’s great test of exposing me in my most vulnerable light, asking people to love me where I’m at.
There are also people who can see through invisible sickness that I only speak grace over. Even when I want to hide it, my boyfriend undoubtedly sees right through my bullshit. Alex has seen this whole ugly process from cliff jump to diagnosis. The worst of pain, forcing my stubborn self (on multiple occasions) to get medical attention, watching me go unconscious on our bathroom floor, and a few all-nighters with me in a hospital, he’s lived it. These events aren’t usually part of the infatuation phase, last time I checked. And as much as I fear the burden of time it will take for our lives to be “normal” again, he holds space for me to heal in ways I can only hope to do for others.
making visible strides
A few weeks ago I talked to a vibrantly spiritual woman who read me like a book. She said I couldn’t become a nutritionist until I had my own goosebump-inducing comeback story to tell. I needed the testimony of healing myself before I could embrace the role of a light worker, a healer. She also told me that the irony of this season is that I’m getting stronger in being completely broken down emotionally and physically. So I’ll be damned, Julie, I’m paying attention to myself by force while that testimony writes itself.
Right now, the best things I do for myself support emotional wellbeing. I get outside as often as I can, spend time with people, and take time to receive before giving. I can’t wear a badge that says I don’t feel well. I have to use my voice as painful or burdensome as that feels when I flex it.
The people on my team now make my world go around, making invisible sickness feel seen and hopeful. I extend my arms to anyone also battling sickness, invisible or in plain sight. I’m on that team and will work for that team when I heal and my practice is in full swing.
humbled again, we don’t make our own timelines
According to the timeline I set for myself a year ago, I should be pouring into my nutrition practice or I’d be employed in a clinic. I should be posting on Instagram to market my business and build community in the wellness space. Pouring into my business is going to wait until I’m done pouring into myself. There’s little I eat or do right now that anyone can relate to worth sharing on social media, and I can say with conviction that it’s okay.
Treatment for this hot mess of diagnoses is going to be a slow process for someone who likes to do things swiftly. I’ll be patient, though. No one gave me a terminal diagnosis, these conditions can be managed even if have to do it for the rest of my life.
Everyone has their own difficult seasons. Silence in suffering doesn’t help us heal - thanks for sharing in mine.