Don’t Be Like Bob

Don’t Be Like Bob

Last Saturday there was another writeup on my continuing saga with Lincoln Financial Group. This time the article was published on Relation State, a blog run by a good, progressive-leaning friend of mine who wanted to assist me in my mission to warn people away from LFG and its products.

READ: Lincoln Financial Group Scams Cancer Patient

In a goodwill effort to reach a larger crowd, my friend shared the post on the Relation State Facebook page. For the most part, people were sympathetic. But there’s always that one guy, isn’t there? This time, the guy’s name was Bob.

Bob, bless his heart, seems to think he’s immune to the havoc a billion-dollar company like Lincoln Financial can wreak. He commented, probably without knowing I was in the audience, that whatever the insurance company had done, the fault was with me. “I got what I paid for,” and “I should’ve read the fine print,” he said.

It’s almost cute how Bob believes Lincoln Financial discloses their misdeeds in writing at all, let alone before a customer pays her premiums.

But some people, and I think it’s safe to assume Bob is one of them, cling to an oversimplified, conservative notion of capital-P, capital-R Personal Responsibility. They prefer believing they’re better and smarter than the rest of us over acknowledging that shit can happen to them too. Lincoln Financial Group counts on people like Bob to keep their secrets safe.

Bob’s comments reveal the crux of his personal philosophy: his fortune isn’t fortune at all—it’s superior intelligence. By his logic, I’m just gullible or stupid or both, and that’s the real crime here.

Despite the insults we attract from people who don’t get it, it’s important for me and people like me to keep telling our stories. Why? Because when we talk in generalities, the information doesn’t stick. The world stays complacent. Someone else gets brain cancer and instead of accessing the safety net she paid for, an insurance company records an immorally large profit, profiteering doctors like Brian Samuels and Lee Hartner line their wallets, and a disabled woman with a brain tumor forgoes medicine and racks up additional debt just to keep the lights on.

We can throw a wrench in the works, slow—maybe even halt—the conveyor belt carrying our money to liars and racketeers.

But not if we’re content to be like Bob.

How to Get Your Doctor to Listen

How to Get Your Doctor to Listen

As a patient with chronic pain who was undiagnosed and then misdiagnosed (they told me I had fibromyalgia but it was a brain tumor) for years, I learned a thing or two about how to get your doctor to listen to you.

Going through life with a misdiagnosis—or no diagnosis at all—is as hard to bear as whatever’s ailing you. Not everyone is born a self-advocate. It’s something we must learn and practice.

So here’s what I’ve learned. I sincerely hope it can help you too.

Why Your Doctor Isn’t Helping

It may be that your doctor, though well-intentioned, isn’t picking up on what you’re telling her. Or maybe you’re not communicating as clearly as is needed. Or, you know, maybe your doctor is just an asshole. (I’m telling you some of them are.) For me, it was a little bit of everything.

First, let me assure you that if you are currently facing this struggle, there’s a good chance it’s not your fault. There’s also a good chance you’re a woman. Doctors not listening to female patients is a thing, and the problem of sexism in health care is long-running and systemic.

According to Prevention, for example, women are 50% more likely than men to get a wrong diagnosis after experiencing a heart attack, and hysteria wasn’t removed from the DSM until 1980.

Nineteen-freaking-eighty!

But as the world can attest, cutting ridiculous junk from a manual doesn’t automagically remove stigma and prejudice from a profession or a populace. From psychology to surgery, health care is still plagued by crap assumptions that undermine the care of women.

And it’s not just the old white guys who are guilty of perpetuating harm—women doctors do it to women patients, families and friends do it to people they love.

We. Do. It. To. Ourselves.

My Chronic Illness Misdiagnosis

For me, the trouble started because I was a woman in my thirties presenting with chronic pain. It was generalized, meaning I hurt everywhere not just my elbow or my neck. And because the pain prevented me from being active, I was also gaining weight.

Before a single drop of blood was taken, a nurse practitioner told me I probably had fibromyalgia. I was tested for arthritis and a handful of autoimmune issues straight away, then referred to a rheumatologist the following week.

When the blood test results were wholly unremarkable, the rheumatologist presumed me to just be a pudgy, complaining woman in need of antidepressants.

Unsurprisingly, he officially diagnosed me with fibro, a condition with a unique and horrifying stigma all its own. And when his (mis)treatment plan failed to help me, he put the blame squarely on my shoulders. His demeanor toward me turned hostile, he communicated with me like I was an ignorant, troublemaking child, and he was outright belligerent when I asked him questions.

How dare a uterus-having technical writer ask if maybe Cymbalta wasn’t The Answer.

That’s when I knew without a doubt my rheumatologist was a lazy stinking misogynist, which brings me to my first bit of advice.

Tip 1: Fire All the Assholes

Yes, I know what I’m saying is very difficult to do in a lot of cases. Restrictive insurance networks, a limited number of doctors and specialists in your area, and sheer exhaustion from your chronic illness can make finding a new doctor all but impossible. But your health is the thing, and you can’t protect it if you keep leaving it in the hands of an asshole.

Cry because it’s hard and unfair. Absolutely do that. But then remember that you don’t have to solve the problem in one day. Promise yourself to look for a better option and jump at the opportunity when you find it.

Tip 2: Expect Struggles with Good Doctors Too

Not all my doctors were so lazy and horrible, but by the time I was ready to give another doctor a try, Dr. Asshole had already done his worst. The wrong diagnosis stuck to me like toilet paper to a shoe.

He was given the benefit of the doubt at every subsequent doctor appointment I had for the following two and half YEARS, and at least a dozen more MDs and PAs and NPs tried their best to persuade me I really did have fibromyalgia after his misdiagnosis.

It’s maddening if you think about it too long, but medical professionals—even fired ones—are always presumed to know more about being sick than the people who are sick. You’ll need to mentally prepare yourself for this reality before every appointment.

Tip 3: Take a Break

Meanwhile, I continued experiencing symptoms that didn’t really fit with fibro. The unexplained haunted me, and I got sicker. I surfed WebMD and Dr. Google and tried to diagnosis myself. When I asked doctors about the things I’d learned, it didn’t go well. If I wasn’t ridiculed on the exam table, I was politely ignored.

There were days when I felt like I just couldn’t do it anymore, so I didn’t. I took time off from going to appointments and even scheduling appointments until I recovered enough strength to deal with more heartache from doctors—people I was taught to trust with my life. I told myself I’d go again when I had the energy to communicate without bursting into tears.

And, yes, I did break down a few times. It’s inevitable, dear human. Don’t beat yourself up about it like I did.

Tip 4: Ask To Rule Out Diagnoses

I had infinitely more productive appointments when I stopped asking “Could it be X?” and started asking “Can we rule out X?” I don’t see why such a subtle change should matter so much, but it did.

Doctors were less likely to see me as a difficult, self-diagnoser and more likely to see me as a diagnostic partner when I asked if we could rule something out instead of confirm it. In fact, no one bothered to order a single MRI until I asked, “Can we rule out MS?”

Folks, that first MRI is how they found my brain tumor. Or, as I see it, how *I* found my brain tumor.

Tip 5: Recognize Internalized Bullshit

We can be our own worst enemy when we take in and internalize bad messages from external sources. Sexist and ableist ideals can ooze out of us without our realizing it. We can be gaslit by medical pros without seeing the harm because we’re taught to treat them as authority figures or saviors instead of trained diagnosticians paid to do a job.

Mull it over for a bit and see if you’ve fallen into traps that affect your ability to self-advocate.

  • Do you hear yourself as a reporter of facts or a complainer when you tell a doctor your symptoms?
  • Do you think all your problems would go away if you could just lose the weight?
  • Do you always think you’re sick because you’re depressed and not depressed because you’re sick?

That asshole rheumatologist I mentioned before? He’d only ever seen me fat and just assumed I was lazy and overeating. He had no idea that less than a year before I was running 5Ks on the treadmill or completing a Jillian Michaels’s Shred workout in my basement five times a week.

Still, I had to fight like hell not to let him gaslight me. He nearly had me convinced I was fat and lazy and my pain was imagined.

Tip 6: Take Someone with You

I’m as independent as the day is long, and I’ll tell you I hated bringing my husband to appointments with me at first. Not because I minded him being there, but because IT SHOULDN’T FUCKING BE NECESSARY. (Ahem, sorry. This will always be a sensitive subject for me.)

However, when I couldn’t put my own underwear on or get myself out of the bathtub anymore, I relented and asked him to join me at my next appointment. Being stubborn about it might’ve killed me, looking back on it. Anyway, having a man in the room changed the way all my doctors behaved. Some definitely more than others.

Turns out it would later become absolutely essential for Dan to attend my appointments. The point is that I probably should have asked sooner than I did, given how the world works.

Tip 7: Connect with Other Patients

I know there are patients out there with different perspectives who have learned things I haven’t. I encourage you to seek them out. There’s an entire community of doctors and patients online who are constantly sharing what they know. Seek them out.

And if all else fails—and sometimes it does—try weed.

So My Ex Wants to Read My Memoir

So My Ex Wants to Read My Memoir

On the night of November 1, I couldn’t sleep. So I grabbed my cell phone from my nightstand, thinking I’d play a mindless game until I eventually crashed. Before I could open the game app, though, an email notification popped up. I had a new message from Patreon. Normally, I’m excited to acquire a new patron, but on that night my mouth turned dry and my heartbeat became irregular. My large intestine seized and the acid in my stomach sloshed in waves.

“New $1 Patron! Meet [Rodney]” the subject line read.

My wants to read my memoir on Patreon

Yup. My ex-husband had signed up to read my memoir. Only he used his real name and his real email address to do it, not the pseudonym I’ve given him. I know he still stalks me online and don’t usually give it a second thought, but that night I started to fill with rage. It began in my toes and had worked itself up to about my collarbone before I recognized it for the resurfacing trauma it was.

Writing the memoir can also trigger such a response, but I’m aware of what I’m doing to myself and can mentally prepare to deal with the feelings before they morph into physical malady. Being triggered unexpectedly by someone else—the asshole ex no less—well, that required time to gather my wits.

In the middle of defending myself to myself in my head (don’t pretend you don’t do it too), I stopped abruptly, letting the amateur therapist in my brain take over.

“It’s my story to tell. If he doesn’t like—” Me-Me was saying.

“Didn’t you tell yourself he would probably pull a stunt like this when you started the project?” Therapist-Me interjected.

“Huh? Oh. Yes.”

“And what was your conclusion at that time?” Therapist-Me prodded.

“Fuck him. Who cares?” Me-Me replied, somewhat unsure.

“Right. And what’s different now?”

“Nothing,” I said. “His existence literally doesn’t matter to me anymore.”

Therapist-Me paused, waiting to see if Me-Me had anything to add. I did. “OMG! This is absolutely hilarious! Is he trying to intimidate me by paying me $1? I have to tell Melanie. I have to blog about this. But first I have to block him from commenting on Patreon. He doesn’t get to make MY story about him. Do you remember when he hijacked the comment threads on my old blog? Narcissist gonna…narcissist?”

My thoughts trailed off as I opened the Patreon app to block my ex-husband’s account. The app notified me that the requested action couldn’t be completed because the account had been deleted.

Heh.

I don’t honestly know whether “Rodney” meant to pop in for a minute to intimidate me and thought giving me a dollar was the best way to do it, or if he just couldn’t help himself. Maybe his curiosity got the better of him and he just had to have a look. Maybe he didn’t realize the name and email he used to create his patron account would be sent to me. (In which case, what a dipshit! Next time use an alias and a burner email, you twit.)

Either way?

LMFAO.

I don’t know if Rodney had enough time to read all the published chapters of Who You Gonna Believe before he bailed, but there’s plenty of time for YOU to catch up before a new chapter drops on November 30. Your patronage gets you all the juicy details AND it helps me keep the lights on.

Think about it!

Become a Patron!
Welcome to the New emilysuess.com

Welcome to the New emilysuess.com

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