Friday, May 22, 2015

Necessity of Self Diagnosis and Acknowledging Its Value and Validity

(Quoted insight from friends peppers this piece. Though it's been arranged to relate to surrounding text, I’ve chosen not to set up each paragraph of dialogue with a formal segue.)

We place a lot of faith and trust in doctors who’ve spent so many years becoming experts in their respective fields. To think that just a few hundred years ago we had little recourse but to act independently on what knowledge we could glean from our own research and experiences and those of our neighbors. . . . Just like we treat most common ailments today. We become very knowledgeable about the things we experience regularly, and we easily pick up treatments from convenience, grocery, and drug stores. Yet we as a society largely disparage self diagnosis and self medication of mental disorders.

“OTC medications exist because you can self diagnose a bunch of shit and treat it without seeing a doctor. Yeast infection. Dehydration. Heartburn. Diarrhea. Constipation. Aches and pains. But suddenly that stuff all doesn't matter when it's other kinds of health? NOPE.” —Elyse “Mofo” Anders

Earlier this week a now-former Facebook “friend” asserted that when people tell him of their self-diagnosed PTSD or bipolar disorder, he knows that what’s wrong with them is not either of those things but that they are “idiots.” This attitude toward self-diagnosis is unfortunately all-too prevalent and contributes to furthering the stigma against mental illness in the first place by silencing those who do not or can not obtain a professional diagnosis for whatever reason.

“Misdiagnosis happens even when professionals are on the job.” —Danielle St. Johns

Self diagnosis is not inherently invalid, ignorant, or inaccurate. Yes, some people mess it up with the help of WebMD and determine themselves to have any and every ailment imaginable, but so do doctors all the time. To assume that every layperson is too ignorant to identify their own ailments is absurd.

“I have a hard time believing that any doctor understands what I think and feel and the way I think and feel better than I do. Anybody who does instantly has me suspicious.” —anonymous

You don't roll your eyes and dismiss a person who says they have the flu or a mildly sprained wrist if they haven’t seen a doctor yet, so why is mental illness different? A person knows what they're going through, and frequently doctors end up making things worse.

“The major difference is there's a lot, even in the medical profession, who don't believe mental illnesses [exist]. . . . Family history and years of doing in-depth research on what I have and don't have, and yet I'm supposed to take the opinion of a doctor who looks at one five minute survey and comes up with a different conclusion?” —Sascha Adeen Sinopa

Testing and treatment are prohibitively expensive to get, and the illness itself and surrounding stigma can create “long delays−sometimes decades−between the first appearance of symptoms and when people get help.

It took me over a decade to seek treatment for anxiety and depression. That doesn't mean I didn't know what it was before then. I found moderate success in managing both through exercise and talk therapy with friends. Should I have gotten a doctor's note to allow me to talk about my own mental health with others?

Even seeking treatment can cost people their jobs, future prospects, families, friends, and significant others, to say nothing of the financial cost and emotional strain of auditioning doctors and undergoing multiple tests.

“It has taken a proverbial army of counselors (5+), shrinks (4+), and doctors(5+) to get [a holistic diagnosis] over time. Oh, and my own degrees, one heavy on psych, and now a nearly complete nursing degree. That's a lot of time, energy, and privilege to be able to access that amount of care over the past 19 years.
So when people self-diagnose, I completely understand why, and am far more reticent to judge their motives or conclusions.” —anon

It's very different to say, for example, “I find it frustrating/unfortunate that misdiagnosis is so common,” or “It sucks that people can't get the treatment they need for whatever reason,” than to call the self-diagnosed “idiots,” drama queens, “special snowflakes,” and attention seekers.

"One thing I've found upsetting when talking to people who either don't understand mental illnesses or have a negative view, is that if they even believe it at all, they assume it's like everything else and that the symptoms come and go infrequently.

"That's not the case. It's chronic, and daily. People have been dealing with those symptoms their whole life. And yet, some random doctor, or Google phd is supposed to know better?
I hope one day that the psychological field can be changed to something that benefits patients and not the doctors' wallets." —Sascha Adeen Sinopa

Most people would be horrified to learn how frequently doctors dismiss their patients and treat them like ignorant children, especially women, fat people, and the neurodivergent—precisely those demographics in greatest need of professional help.

“Funny story: I went to my GP before I was ever diagnosed with depression or any other mental illness. I described my symptoms to them in layman’s terms, and they dismissed me because I didn’t know how to accurately describe what was happening. So a year later, after having researched more on my own because doctors didn’t help, I went to the doctor again and this time knew a lot of the terms for my symptoms. This time they dismissed me as a drug seeker because clearly people who actually have depression and anxiety don’t know the terms and would instead describe their symptoms in their own words.

"I didn’t get a diagnosis until a couple years later—after I had dropped out of college once and attempted suicide a couple times. I only got a diagnosis because my boyfriend at the time called the mental health clinic for me and made me go in and I was so far gone that it was obvious there was something wrong with me.

Oh, wait. That’s not funny at all." —DirtyNerdy

The plural of anecdote is certainly not data, but there are plenty of studies (some linked above) that support these horror stories as more than isolated incidents. What we desperately need is for doctors to treat their patients with professional respect and acknowledge that patients are THE foremost experts on their own experiences.

“My only issue with self diagnosis is that differential diagnosis is REALLY difficult. Many, many diagnoses have similar or overlapping symptoms, especially in children. Who’s to say this person has Bipolar? PTSD? PD?
“And then you get into comorbidity and it gets RIDICULOUS. Unfortunately treatment for the similar-looking stuff can be very different.

“BUT I never shame people who come to me with their own ideas about what label to assign to what’s happening to them. I'm lucky enough to have avoided diagnosis and all the limitations of the DSM-V thus far (that will soon change), but when it comes up and I disagree, I DISCUSS IT WITH THE PERSON and offer other ideas about symptom clusters from the perspective of someone with training and experience with trauma. (Unfortunately many other mental health professionals really don't have a good grasp of traumatic reactions.)” —Hannah Ulbrich, MS LPC-I

This is not to say that professional diagnosis and treatment aren’t beneficial in any way, only that they’re not obtainable for everyone and not always helpful. The antidepressant that’s doing wonders for my mood has a noticeable negative impact on my cognitive function: brain fog and difficulty recalling words and names. For now, I’m okay with the trade-off. Not being wretched and miserable is truly an amazing experience.

“And even though I feel I have a solid diagnosis, my options are to deal with soul-crushing anxiety or have the emotional range of an 8 pack of crayons.” —Anon

Though medical treatment may not always help, diagnosis alone can be beneficial. Myriad afflictions have not been well studied in heavily impacted demographics (i.e., ADD/ADHD in women and girls) making them difficult to identify and diagnose under the best conditions and virtually impossible to treat reliably. ADD/ADHD presents very differently in girls and women than in boys, is incredibly common in women and frequently undiagnosed and misdiagnosed as anxiety and depression, which are actually symptoms and comorbidities of ADD/ADHD itself.

“I was diagnosed with ADHD but the adderall destroyed my stomach and I can't afford other meds so I just try to do my best with it. Just knowing I have it, though, makes it so much better because I used to be ashamed all the time when I forget/lose stuff and that makes it all worse (aka creates more anxiety).” —Anon

I’ve never really believed that I was just about the only person in my whole family to not have ADD, but I did so well in school that I couldn't have gotten a diagnosis if I wanted one. It’s catching up to me as an adult, and from reading up on how it presents in women, that’s one self diagnosis I'm sure of and can now work on managing. My internal dialogue, since linking my symptoms with adult ADD, has moved from damaging self recriminations over clumsiness and the slightest of failures to “That’s just the ADD. You’re okay. Everything’s okay.”

Professional treatment isn’t always accessible, but we have a wealth of information at our fingertips to offset that reality. Sure, there’s tons of bad information out there, but for millions of sufferers, there’s tons of beneficial information to be found as well. And when you’re facing a lifetime of illness and have the hours and ability to devote to researching it, navigating one’s available resources to find the best answer can be incredibly empowering when missed diagnoses of one’s past have been endlessly disheartening.

Self diagnosis plays a critical role in improving quality of life for millions of people and helping them pursue treatment for anything physical from the common cold to a broken toe and for many types of mental illness as well.

Know that when you make quips about mental illness and self diagnosis, you’re speaking about 20 percent of your friends, family, coworkers, and community. So think before you speak. And consider just listening instead.

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