What NOT to Say to Someone with an Autoimmune Disorder
The first time I heard about Chronic Fatigue Syndrome, I scoffed a little. It seemed like a freshly made-up disease that meant the “sufferer” was lazy and needed a label to explain it away. They should just work out more, I thought. Or eat better.
It’s a common attitude. Until you get sick yourself. Then everything changes. You stop scoffing and become scoffed at instead.
I was diagnosed with Hashimoto’s Disease (a low thyroid condition) four years ago. My life has changed pretty radically because of it. My energy levels are unpredictable and sporadic. I never know when I can make a nighttime plan since I might feel too wiped out by evening. Sometimes I wake up feeling flattened energetically and I pretty much feel that way all day, for several days. (A “flair-up” its called.)
My mental acuity is diminished during a flair-up. Brain fog descends upon me in the middle of my work day, making simple tasks difficult. Memory…ugh. Let’s just say I’ve searched for my keys more in one year than I have over several decades.
It’s like a ghost has taken over your body and haunts you on an frequent yet inconsistent basis. You look the same. You act the same. But you don’t feel the same. You’re haunted. Suddenly everything…is…a…damn…effort.
Those around you don’t see the apparition sucking you dry. So they make suggestions from the “other side.” Their cavalier comments and advice feel out-of-touch and often, plain insulting.
“You should just work out more. That’ll make you feel better.”
As an athletic person most of my adult life, this one really got on my nerves. The subtext is that there’s some “quick fix” like a damn jog that will eradicate a complex, hormonally-fueled problem.
It’s also just plain bad advice. A hard workout can actually be damaging when you’re in flair-up mode. Your body lacks that critical metabolic driver (thyroid hormone) so you’re simply not producing sufficient energy for exercise…or anything else, frankly.
But at first, I also thought working out harder would make me feel better. Until I fainted one day after surfing.
Then I began working out very differently: softer, gentler and with more “mindfulness” as the kids say. A relaxing walk, bike ride, mild stretching, gentle swimming — that kind of thing. (And yes, yoga too. It didn’t “cure” me as several kind souls suggested but it was easier on my overtaxed system.)
After years, I can resume a semi-normal workout. But I don’t strive for it. I don’t push myself in the gym the way I used to…frankly, I don’t know why I pushed myself that hard in the first place. It’s a very masculine, forced approach to exercise that doesn’t resonate with me anymore. (Life feels hard enough, you know? I don’t need my workout to beat me up.)
“But you’re on medication now. Aren’t you better? My sister is on thyroid medications and she’s fine.”
Kudos to your sister. But every body is different. I’m guessing people who have diabetes don’t feel “fine” just because they’re taking insulin daily. It’s still a serious illness after all.
In my case, it took years to get the medication dialed in (I take naturally desiccated thyroid not the commonly prescribed Synthroid for a number of reasons). Too much and I’m in a hyperthyroid state, which presents its own host of problems. Slightly too little medication and I’m back in walking dead mode.
But even with medication, the effects of this disorder continue. I’m simply able to manage them better — it’s not a cure. I still have bad days when the fatigue and the memory issues return.
“Oh, that’s just age. We’re all getting more forgetful.”
I’m 52 not 82. Besides, this isn’t your commonplace forgetfulness but one born from a brain that’s affected by hormone fluctuation. It’s a chemically induced forgetfulness, basically. On a good day, my memory and mental acuity is sharp, on point. On a bad day…what was I saying?
“It’s probably depression. Have you thought about therapy?”
Ugh…one of the most common and annoying refrains. This is a physical issue, not mental. My hair falls out, my nails get weak and brittle, my weight can fluctuate quickly. I wake up with splitting headaches from sudden hormonal shifts in the middle of the night. Freud isn’t going to get to the bottom of this.
The frustrating part: you do get depressed because of Hashimoto’s. Imagine being in a flu-like state with serious brain fog day-after-day for years. Thinking is an effort. Doing is a bigger effort. Who wouldn’t be depressed? But it’s not the cause of your depression — it’s the end result.
“I’ve been feeling a little low too. It’s probably the weather change.”
Another annoying refrain, stemming from those who secretly don’t believe you have a real problem, so they think the cause of your unwellness is the weather, pollen in the air, a common cold going around, the fucking moon cycle, etc.
They also think they can relate. I feel a little tired too lately! The fatigue from Hashimoto’s borders on crippling. A deep and ache-y tired. Not your garden variety tired from an overworked life. (The worst part: Hashimoto’s contributes to insomnia so the very escape you desperately seek is often elusive.)
“You’re STILL feeling badly?”
You begin telling people less and less when you’re having a bad day. Because its not going away, this issue. The ghost is here for the long haul. There are no easy answers and no clear, defined end point…and besides, no one wants to hear about it anymore anyway. You can feel their discomfort when you mention it.
I’m not sure why people feel so uncomfortable accepting the reality of a physically-born illness like this. They negate, reduce, diminish. And I’m sure women receive an extra heaping dose of this kind of casual dismissal.
Regardless, I’m semi-grateful I’ve had to manage this condition. I’ve cleaned up my diet considerably (no gluten, no dairy, less sugar, mostly organic, etc.). I’ve cleaned out the toxins in my life (cleaners, detergents, cosmetics, shitty people, etc.). I don’t feel the need to “grab life by the balls” anymore. I value downtime, relaxation, cooking, gardening, meditation, meaningful conversations, meandering, petting White Cat, afternoon naps with a podcast playing, casual sex*, peace and calm.
I feel better than I have in years. But sometimes, the ghost is back and I’m not sure why. Was it something I ate? Something I drank? The fluoride in the water? The metal at the bottom of my last remaining non-stick pan? Hair dye? Sugar? The new shower curtain off-gassing? Insecticides in the grass? Stress? The Pill I took for 10 years? Radon? Black mold? EMR’s from my cell phone? My 20-year old root canal? Too much working out? Too little working out?
“Oh…you don’t have to be THAT paranoid, Beth!”
Really? How do you know? Hashi’s can be a “perfect storm” disorder. Many components came together to create it. It took years to fulminate. Yes, both of my sisters have low thyroid issues. But that doesn't necessarily mean its genetic. We could also share the same food intolerance or been exposed to certain toxins growing up. I may never know exactly what caused it. So yes, everything is suspect in our increasingly foul, polluted world.
Now, if someone tells me he or she suffers from an autoimmune disorder, I’m all ears. And all empathy. I get it. They have a ghost too. I can see it even if no one else can.
*Just wanted to see if you’re paying attention ; )
