Built and Wired Differently

This is an open letter to a gentleman who was not a medical professional, but encouraged me to go off my psych meds and use exercise/diet instead to manage my mental illnesses. My friends encouraged me to block him on social media for giving dangerous advice, and though he was kind in other ways, I did so.

This last year of my life, since going off my psych meds, has been a truly harrowing experience in many ways. I was chronically fatigued after an episode of the shingles in June 2020, and my psych med manager was the only one who seemed to understand my level of exhaustion. Under her supervision, I weaned off my psych meds to see if it would “reset” my system and rid me of the fatigue.

We did start me on a brand new med after the withdrawal process. I had been on psychiatric medication for a dozen years. The withdrawal itself was awful. Shaking, not sleeping, nearly out of my mind. I even called the local mental hospital to see if they took my insurances. But as I have a child with medical issues, I really couldn’t afford to leave him for a hospital stay.

So, I soldiered on. As so many of us parents do.

What happened at that point? I was starting to feel better on the new medication. I had been on the medication before with minimal side effects. Then the blinking began.

Within the space of two weeks, I was twitching and drooling when exposed to any form of light. I went into the ER to rule out a stroke. They thought I was having a migraine, but what was happening was that I was developing what may be permanent photophobia.

They yanked me off all my psych meds and antihistamines, convinced that the photophobia was just me being mentally ill and/or a side effect.

But you see, things were going better before all of this started. I was going to go back to school online to eventually get a better job. the future looked bright, until I could no longer look at the light.

My eyes are still so dry despite prescription drops and OTC lubricant gels and drops. They’ve even prescribed allergy drops to try to control another type of inflammation they can’t yet explain. They say if I go back on a regular regimen of psych meds, I could risk blindness because of the severity of the dry eye.

The real kicker? My anxiety, and especially my OCD, have spiraled completely out of control because I am no longer on medication. I’ve been washing my hands excessively since I was five years old. To summarize by quoting a Duke Ellington classic, “I’ve got it bad, and that ain’t good.”

I desperately want to go back on some type of anti-anxiety drug. But I don’t want the damage to my corneas to come back, because that also provokes a lot of anxiety. I would also need a mood stabilizer on top of whatever anxiety med they prescribe . Which (you guessed it) would dry my eyes further. It’s a no-win situation.

And believe me when I tell you that when it’s not suppressed by medication, the obsessive thoughts, insomnia, and the guilt spirals are absolute hell.

Would this have progressed to a full-on autoimmune disorder had my body not gone through the stress of withdrawal? Maybe. But the one person who was listening and trying to help may have inadvertently sealed my fate on that one. Not her fault. Getting into a rheumatologist for an appropriate assessment takes an act of Congress if the right blood tests don’t flag inflammation.

In the months since, I have gone through two dismissive primary doctors. The ophthalmologists believe something is awry. But between the first eye doc and the dry eye specialist, I’ve seen them 13 times in less than a year. And they saw all kinds of things, like persistent, bilateral eye inflammation, and dry eye syndrome. Things most commonly associated with lupus or an autoimmune disorder.

I finally have a new doctor who has seen weird things on my X-Rays. But more importantly, he believes me. My album full of “symptom selfies” also indicate that something is awry. Especially this lovely rash I get with minimal sun exposure. My new doctor got me into a rheumatologist and I am so hopeful that they can treat this.

In years past, I’d been struggling with insomnia that was actually a symptom of undiagnosed bipolar disorder. At one point, as a military spouse, my now-ex let me quit my job and stay home as I was under a lot of stress from anxiety. My blood pressure was sky high from having to take daily decongestants for my severe allergies. I decided to take matters into my own hands. I exercised and dieted, and even got myself a nice little six-pack.

My then-husband was delighted. But my secret? The diet and exercise had made me manic to the point of delusion.

You see, not all of us are built the same. I now suspect, from the level of scoliosis in my spine, that I have a genetic connective tissue disorder. Some of us have very complex health issues that diet and exercise, or “being one with nature,” will never, ever cure.

Oh, and since I reacted for a full week after having scratch tests for seasonal allergies, being one with nature without appropriate drugs involved is also not recommended.

So next time you give unsolicited medical advice that could be very dangerous for other people, maybe keep it to yourself. I wish you and your family well. I would never wish something as devastating as my mental or physical disorders on you or any one of them.

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