Anyone who has ever had a protracted medical issue, including pregnancy, has heard a plethora of what I’m sure are well-intentioned but should be kept hidden on the back porch with the moonshine comments from what seems like gawd and everybody. The one most chronically ill people lament is, “But you don’t look sick”. I may take some flack for this, but I’ve decided this one’s a compliment. Think about it. If I looked like I felt most of the time, small children would run screaming for their mommas like they’d just seen the Exorcist. I may feel like crap, but there’s no law that says I have to look like it! Once you step back from the notion that you have to “prove” anything to anybody, you can easily turn this one around to be a positive most of the time.
Trust me. I have heard much, much worse.
“You should exercise/drink aloe juice/eat licorice/try acupuncture/become vegan…” This one is usually preceded by “I’ve never heard of it”, which is precisely the moment I quit taking anything you say seriously. Unless you can define what I have, or hell, even pronounce it, please do not offer me a bunch of voodoo-woo-doo to fix it. I know more about my disease than the majority of doctors I meet, so if there were a non-traditional cure out there, believe me, I would have already been there done that bought the t-shirt and owned the store.
“Have you ever thought of trying probiotics?” Well, yeah, if it were possible to overdose on them, I would be dead. Unfortunately that $1500 per month specially compounded medication my insurance company is so thrilled about just cannot be replaced with some $20 per month wacko-lacto from BarrysAndLarrysTummyCures.com. For some time, I took them out of principle. Then, when I was diagnosed with SIBO, one of the two bacteria massively overgrowing in my small intestines was lactobacillus. Yes, I had a probiotic infection that had to be diagnosed and treated by the National Institutes of Health! It required massive antibiotics to get rid of it, and my GI doctor has told me not to even look at another probiotic again. Ever.
“Have you tried eliminating gluten, sugar, caffeine, red dye….GMOs, meat…food?…from your diet?” I have subsisted solely on IV fluids for over a week. I think that elimination diet pretty much ruled out…uh…everything! Please just don’t.
“Exercise would help you so much. I started running/biking/mountain climbing/INSANITY/and I’ve Never Felt Better!” There were many weeks I could barely work ten to fifteen hours. At one point, I worked my way UP TO ten minutes on my stationary bike, and I felt accomplished. This bothered me a lot, especially pre-diagnosis. I felt like I was dying, there were days I could not lift my head far off the pillow, and the most exercise I could manage was rushing to the bathroom. Never, ever advise a sick person to exercise, especially if you are in a position of some authority. In hindsight, it actually could have killed me, and (hopefully) that might have made a few people feel kinda bad.
If I had even a speck of extra energy, I would be sitting in the floor folding clothes (because it took too much effort to stand), or doing something else that might be useful. Maybe spend a few minutes with my family. In hindsight, it’s a really good thing I pushed back on this, because any undue stress on my undiagnosed, wasting away body could have sent me into a deadly crisis. I hate evangelical fitness freaks. I love the 0.0 sticker on my car. We are all gonna die anyway, and I won’t die sweating. Guaranteed.
“God doesn’t give us more than we can handle!” After I condemn you to the hell you believe in several dozen times, I will quietly give you my death stare until you wither away like the end result of a successful witch’s hex. You need to realize it’s a good thing I don’t believe in him, or I’d be pretty pissed off right now. Do you think HE has a special hatred just for me? This is right up there with “Everything happens for a reason”. Don’t patronize me.
Yes, I’m thrilled Jesus started your dead car for you so that you were not late for work, and I’m just as happy HE was the reason your kid’s football team won last night, but somehow it seems in the chaos of handling your sports and auto issues, HE doesn’t give a crap about my life and death battle with my body. And nothing makes a sick person feel smaller and less significant than that idiotic woo-woo phrase. So never utter it again.
“If you have a yeast issue, why not go on the candida diet? My friend did it, and it cured ALL of her crazy symptoms!” I was desperate enough to ask my GI doctor about that, and he was desperate enough to put me on it if he thought there were even a snowball’s chance in hell it would help a teeny bit, and unfortunately…one has NOTHING TO DO WITH THE OTHER. Doctors and their forty years in medical school are handy for this kind of stuff.
You see, yeast in food and fungus in the GI tract are not medically related. The only people who think there is anything to any of this are the voodoo woo-peddling wackjobs on the Interwebs. But I must point out here, again, that I’ve been on IV fluids only for over a week. If this had a chance, that would have at least made a slight improvement in my condition. I deteriorated, so…just…NO. GO AWAY.
I’m not pregnant either. That’s a steroid baby I’m carrying around. The safest thing you can do is ask nicely if there is anything I would like to discuss, don’t ask me probing questions about my illness and medical history that are none of your business, and smile and be friendly. My illness does not mean I don’t want the same respect and privacy everyone else does, too. Treat me just like you would treat anyone else.
I don’t need any smell good candles either.