Dealing with photophobia and chronic pain in the doctor’s office—with dignity intact.

I am going to respond to this because I think my use of self-care shone today. In one single response, I set boundaries. I refused to throw verbal punches, and self-care reflected through my professionalism under duress.

I wrote this morning about my upcoming Ophthalmologist appointment. While IIH calls for both neurology and ophthalmology to control and watch for optic nerve damage/swelling… Neuro-Ophthalmologists handle the entire thing. That specialization isn’t as common in smaller regions, though. I’m lucky to only live an hour and a half from U of M in Ann Arbor. They have a department at the school. This matters, just wait.

The goal was to see someone as an urgent referral first. We needed the diagnosis so that treatments could begin. A regular Ophthalmologist can diagnose, but they don’t usually see rare conditions like this.

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Overload & Reset: Doctoral? No People Skills Necessary.

The doctor I saw today was curt from the start. He had me, suffering from photophobia, sitting without glasses and dilated eyes. He instantly got upset when I asked if he kept the light dimmer than the sun, essentially. He turned on a super-bright side lamp. Then he talked over me when I tried to respond to, “Will this be fine?”

Yes, it would be fine, if it wasn’t pointed directly at my retina… but I didn’t need to look at it, so it wasn’t a big deal. I was trying to say it was fine. However, the question seemed more like a statement about his personality.

I came with a list of symptoms I had been dealing with. I noted my MRI results. Then it came to checking my eyes with the bright light for manual visual confirmation of issues.

Trying not to move because it was painful as heck… I managed the right eye with minor groans of pain. It hurt, but I was trying. The left eye felt like I had molten lava pouring into my skull through the center of my eye. I cried out, again trying not to move but wanting to jerk away.

This man yelled at me:

“Stop it! You’re going to scare the patients! You don’t need to yell, that is uncalled for!”

Genuinely taken aback, I just stated that it hurts, and I wasn’t close to yelling. It was a verbal groan of pain because it hurt a lot to have a spotlight in a photophobic eyeball!

My brain immediately said, “Business-mode activated.” At that point? I opted for short responses. I bit down hard. I tried to fight the pain, feeling more like a volcano in my eye.

The doctor then proceeded to act like I was not present. His dismissal was something else. He didn’t look at me, shake my hand, or use manners. It was a statement of:

I’m done now. You’re eye is still healthy. Have a nice day.

I retorted, politely but sternly, “I appreciate that, thank you for your time. I’m going to look into a professional who specializes in this issue for confirmation, though.” Then I left. Probably red with rage, too.

When you have chronic pain and need a walking aid? Well, that walkout isn’t nearly as fast anymore.

I let my PCP know I wished for a second opinion. Then I set up a follow-up to discuss next steps in my journey.

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Diagnostic Mode: Official IIH Diagnosis, Cataract, and Next Steps

When it comes to doing what he was supposed to, he did. He looked and confirmed eye health. I apparently have an early-stage cortical cataract with cortical spokes in my left eye. Ironically, the eye that made me groan louder than he approved.

My educated guess is that the intensity is amplified by the CSF pressure. It can already cause eye pain and photophobia. Adding something that makes light feel a bit more intense, even early? It may create the perfect storm for photophobic misery.

The sun is my enemy right now.

Lightbulbs are evil.

I will follow up with my doctor on Monday so we can move into the next steps. She is open to a second opinion from a specialist in this area of healthcare, and I shall move forward.

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WordPress Writing Prompt: Self-Care Shows Up Through Boundaries and Self-Love

My friends, self-care is exactly that. Caring about yourself enough to assert your boundaries. Refusing to tolerate a poor example of “professionalism.” This is self-care in its true form.

Not only are learned skill-building tools and calming routines self-care. It can also show up messy, frustrated, but still standing up and saying: “No, you’re not worth my energy. I’m done with you, and never seeing you again would be too soon.”

It is good to have healthy boundaries. It is just another fun way to care for yourself and learn that you matter.

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Key Search Terms

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If you found this post by searching for help or answers—thank you for being here. I hope my story helped you feel less alone and reminded you that your boundaries are not too much. They are self-care. They are survival. And they are worthy of being respected.