Hello, Darkness

CW: medical gaslighting and trauma. And eye issues, various other diagnoses etc. Because well…it’s me.

Having a really bad circumstantial depression day. I left my house too many times last week and paid dearly for it.

I’ve asked several eye doctors if it’s a good idea for me to increase light exposure gradually. They all seem to think it’s a bad idea. So this week, I am retreating to the dimly lit confines of my house.

A tabby cat gives the photographer a judgmental stare. She is sitting on a green couch with her front paws folded slightly under her torso.
Starlight eyes me skeptically. Are you whining again, woman?

I can’t access certain specialists I need as my primary physician thinks I’m too much work. And I have insurance limitations. And I haven’t been able to work in over two years. I’m really hoping the neurologist here or in Utah will back me up as far as referrals are concerned.

I just sorted through all my EOBs in the past three years and trust me, once I get diagnosed I won’t be asking anyone for referrals. I’ve spent enough time in clinics for a lifetime, thanks. Even if I am morphing into a vampire, I think I am good on seeing providers for eternity, if it comes to that.

A pale right hand, outstretched palm down in the sun, is flushed bright red
The light…IT BURNS

My state already had the worst doctor-to-patient ratio in the nation, I believe. And it’s getting worse. So I feel I can’t switch providers again. This gent is primary physician number three, as the first made an abusive comment, and the second was more tactful but equally dismissive. The third (my current provider) found out I needed three surgeries after ordering imaging instead of relying on my mostly normal blood work. And he’s still intent on blaming things like dizziness on anxiety. Or bipolar disorder, which I now think may have been a misdiagnosis.

I must digress…

With 10 verified conditions that can occur alongside autism spectrum disorder, including two established in early development, and a suspected additional four comorbid conditions, and a newly established case of ASD in my immediate family, and the fact that my anxiety/mood are better off now than at any point on the 28 medications I tried for my alleged mental conditions…I hope you see where this run-on sentence is going. My eyes are getting bad and my thumbs are too numb to edit much.

I am terrified of math. But some things are too obvious not to add up. And the waitlist for an official diagnosis doubled in length between my establishing appointment in October and last month. And if my doc is going to gaslight me, he sure as hell better do it with the right diagnosis. I jest, of course. Because discrimination based on mental status or disability is never acceptable at all.

Redirect. Breathe. Focus.

I shouldn’t have to say this, but I had two verified physical conditions that could have caused dizziness on their own when my doctor made those comments. Then the local neuro-optometrist found another just last month. I’ve had disabling anxiety since childhood. I wasn’t dizzy until October 5, 2021.

Grateful the corneal specialist wrote my doctor a letter stating that I have neuropathic corneal pain and that it’s an actual physical thing. Hello doc, anxiety definitely plays a role in this. Because medical providers don’t talk to each other, even when multiple systems are involved. And it makes me nervous that I won’t ever have anything resembling a solution.

But as this article about neuropathic corneal pain states, “the cornea is the most powerful pain generator in the body” due to the density of the nerve endings there. So I’ve been in enormous pain for over two years with no effective systemic treatments.

This might be easy for certain providers to ignore. Unfortunately, its impossible for me to ignore.

I’m not completely off my rocker but some days, when I start to process the medical trauma, and how much my life has been drastically altered, it feels like I’m getting there. And let’s face it folks, with the regular lighting conditions in an ER and the psych hospital…going to either one of those places is more pain than it’s worth.

Grateful for the specialists who are still trying to help. And for my family, who has been so supportive. And for having insurance and any diagnoses at all. But I’m tired of self-referring if I have a suspicion about a diagnosis, to avoid asking my primary for anything. Or feeling, even as a grown-ass adult, that I need another adult in the room to vouch for me and prevent further abusive comments without a witness present.

Help from that neuro-optometrist is on the horizon. He had interesting findings: some binocular vision dysfunction, acuity deterioration in the left eye (and the right eye taking over for the left at times). I believe he also said my astigmatism is now at an angle which “doesn’t generally happen.” I wish I’d asked for him to clarify, I foolishly thought I could find more information on a chronic illness server or online.

But so far I haven’t had any luck. I have also not learned to use a screen reader yet, so my ability to research is pretty limited.

Results regarding autonomic dysfunction are pending. And hopefully recommendations for systemic treatment.

Glad the vestibular therapist who vetted me suggested a migraine specialist immediately. The provider at the time said I would only get to see one if a vestibular therapist thought I needed one. Even though the PT specialist just prior to that immediately said I needed a cardiologist, a neurologist, or both. If the local migraine specialist had been booked out the whole six months, or had been equally dismissive, I don’t know where I would be right now.

Our medical system is broken in so many ways. I hope everyone is getting the relief they can, however they can, though I am positive not everyone is getting the help they need. I am grateful to even have access to care. I know medical providers are overwhelmed. But they are also able to go to work. So far, none of them have helped enough so I can do the same.

I know I need to keep holding on. But it isn’t ok to leave people in the dark, literally or figuratively.

Cue my theme song. Hoping that someday soon, I can change it.


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