Why It's Hard to Listen to Everyone's Advice With a Rare, Chronic Illness


Having a rare chronic illness – in my case primary immune deficiency – is more than just physically exhausting. It is an emotional and mental drain, rife with conflicting advice, misinformation, frustration, and financial strain. If I adhered to the advice of every doctor and health professional I’ve seen in search of a remedy for my illness, all of the following must be true:

I should not eat gluten, dairy, sugar, meat, eggs, nightshade vegetables, alcohol, corn, or soy. I should subsist solely on bone broth and air.

I should get acupuncture, chiropractic adjustments, and massages twice per week.

I should take $500 worth of supplements each month including high doses of vitamin C, vitamin D, zinc, colostrum, branched chain amino acids, omegas, probiotics, enteric oregano oil, grapefruit seed oil, collagen, mushroom supplements, and some kind of enzymes that are supposed to “break down biofilm.”

I should be getting IVIG infusions, but also maybe I shouldn’t, because I may not be a candidate and my health insurance may not cover it. I should be back on weekly allergy shots.

I should work out more, but also less. I should also do yoga and meditate every day.

I should diffuse essential oils 24 hours a day, apply them to my skin, and also add drops to a neti pot to pour directly into my sinuses.

I should stop taking Zoloft, but also definitely should not stop taking Zoloft.

I should be on a steady stream of antibiotics, but I should also never take an antibiotic ever again.

If I enter a space where a dog or cat recently was dwelling, I should leave that space immediately. I should be in bed every night by 7 p.m., but also not let illness get in the way of my evenings.

I should spend $2,000 per month on health insurance for my family of four that will not cover many of my health-related expenses. I should also pay an integrative medicine doctor, nutritionist, and naturopath thousands of dollars out of pocket to supplement conventional medicine.

I should test my adrenals and my immunoglobulin subclasses and my pneumococcal titers and micronutrients (I’m sorry, ma’am, that’s not covered here) and my thyroid — but not that thyroid test, the other thyroid test, so go back again and ask for more bloodwork because these results don’t give us nearly enough information.

I should not post photos of myself at the gym on social media for fear of misleading people into thinking I am exaggerating my illness, but also not post items about my health ailments should people think I am complaining.

I should be grateful to be alive and thankful things are not worse, but I should also be allowed to express valid feelings of frustration in times of poor health.

I should better manage my stress. I should suck it up and deal with it. I should practice better self-care. I should be everywhere and nowhere at the same time. I should be fully present but understandably absent. I should expect nothing from anyone but accept no less than everything.

I should talk about this less, but also more, both privately and publicly.

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