Because, really: the only person who can be an expert on you, is you! With a disease as multifaceted as lupus, I think it’s the only way.
When you have a chronic illness, it’s easy to give everyone else power. You feel sick, so you see a doctor and start new meds. You see more doctors. You submit to test after test. You get conflicting advice. You read endless books and blogs. Well-meaning friends and family explore hundreds of options. Yet many people with lupus still wake up each day feeling like they drank a fifth of vodka and fell down two flights of stairs the night before.
It’s easy to lose trust. But I think trust can make dealing with this lupus nonsense more manageable.
I’ll give you a health-related example. Over the last year, I began resenting my sleep apnea machine. My mask had permanently dented my forehead, and I’m vain. I was strongly considering having an invasive, hard-to-recover from surgery to remove my sublingual tonsils with the hope of curing my sleep apnea (and not having to spend the rest of my life wearing an ugly, face deforming sleep mask).
I spent the last few months trying to make a decision. But I just couldn’t decide. I berated myself for being such a procrastinator.
Turns out, I had a reason to procrastinate. I just didn’t know it yet.
Back in 2011, two independent sleep studies confirmed that I stopped breathing 30 times an hour, which constitutes moderate sleep apnea. At a recent appointment, I talked to my doctor about needing a different, non-forehead denting mask. He recommended another sleep study to make sure my treatment was as effective as possible. And, they’d find me a mask that works better. So I had another sleep study in October. And guess what?
No evidence of sleep apnea.
My flabbergasted doc said there’s zero evidence of disordered sleeping or breathing. Apparently, spontaneous sleep apnea recovery doesn’t happen every day. In fact, he’s never seen anything like it. It defies explanation. We went over every possible reason, including the unlikely event that the study was wrong. The best we came up with was 1) I’m a medical miracle (which he chuckled about); 2) Taking allergy medicine cured my disordered breathing; and/or 3) (my brother-in-law is going to LOVE this crazypants statement) I quit eating gluten and cured my sleep apnea.
We concluded that we don’t know why my sleep apnea disappeared. But I’ve been sleeping without the mask for two months now, and I feel good.
Think of all the time I wasted, angsting over whether I needed to have surgery to cure my sleep apnea. Or worse, think of how terrible it would have been had I forced myself to make a decision when I wasn’t ready
Let’s learn something from this ugly dent in my forehead. The next time you find yourself doubting…or unsure whether a test is necessary or a new pill is the answer, give yourself a little credit. Trust yourself. This doesn’t mean you have cate blanchett (yes, that’s a 22 Jump Street reference) to pick and choose what you believe about your health. To fully trust yourself, you’re required to go full in—to really listen to your body, to really listen to your doctors, to really consider all the facets of your life and what might be causing your symptoms.
And for gosh-sakes, if you believe something is wrong, then don’t stop until someone really listens. If you don’t believe anything is wrong—that’s possible, too!
You are the expert on you. Not your doctor. Or your mother. Or a blogger who may or may not have lupus and claims going gluten free cured her sleep apnea. YOU.
Will you accept my challenge to cultivate a trust in yourself in 2015?
Stay tuned for future installments on trust. Happy New Year!