|
Getting your Trinity Audio player ready...
|
I’ve never been a big fan of having my photograph taken.
Selfies have never really been my thing. Unlike my children, who are experts—and, it sometimes seems, much of the rest of the world—I don’t feel the need to document every occasion with a photograph of myself. Although, to be fair, I probably make up for it in my writing (which is abnormal).
Perhaps it’s a generational thing. Or perhaps it’s because, at 6’6″ (1.95m), I was never going to blend into the background anyway. I always seemed to stand out and usually ended up somewhere in the middle of the photograph, whether I wanted to be there or not.
I guess you could say I’ve always been “photophobic.”
It turns out I simply had the wrong definition.
Today, my photophobia has nothing to do with photographs. It has become one of the more frustrating symptoms of my Progressive Supranuclear Palsy (PSP), and yesterday was one of the worst days I have experienced with it.
The photophobia was so severe that it was virtually impossible to keep my eyes open for any length of time. I even had to pray from memory, wearing a blindfold, for the first time in my life. It wasn’t an experience I ever imagined having (and I could not remember so much).
Today has been much better.
I woke up with equal measures of hope and apprehension. Yesterday I could barely keep my eyes open. Today, with the help of a pair of sunglasses, a baseball cap and the lights switched off, I managed to pray and read again.
It may sound like a small thing.
After yesterday, it felt like a huge victory.
Living with PSP teaches you to appreciate victories that most people would never even notice.
What Is Photophobia?
To my understanding as a non-medical expert but from research I have done.
Despite its name, photophobia is not a fear of light. It is an abnormal sensitivity to light. Depending on the person, it can cause pain, burning, watering eyes, blurred vision, or simply an overwhelming urge to close the eyes. Bright sunlight, fluorescent lighting, LED lights, computer screens and even reflected light from a white page can all become surprisingly difficult to tolerate.
One of the most frustrating aspects is that it doesn’t behave consistently. Like many symptoms of PSP, it ebbs and flows. Some days I barely notice it. On others, ordinary indoor lighting feels overwhelming. Fatigue, poor sleep, stress, sensory overload and the surrounding lighting all seem capable of making it worse. Learning to manage those triggers helps, but they can’t always be avoided.
If I’m honest, I just hope it keeps ebbing more often than it flows.
How Common Is It?
When I started reading the medical literature, I was surprised by what I found.
In general PSP cohorts, where visual symptoms are just one item on a long clinical checklist, photophobia is reported in fewer than half of patients. Nath et al. (2003) found it in 43% of 187 PSP patients.
But when researchers specifically looked for photophobia, using dedicated questionnaires and targeted assessment, the numbers changed dramatically. Cooper & Josephs (2009) found it in 100% of PSP patients, compared with 18% of people with Corticobasal Degeneration. Lin et al. (2020) found it in 92% of PSP patients, compared with 29% of those with Parkinson’s disease. Mohanty et al. (2021) found it in 93%, compared with 40% of patients with Parkinson’s disease.
Three separate studies. Three different comparison groups. Yet all arrived at almost exactly the same conclusion: between 92% and 100% of people with PSP experienced photophobia.
The sample sizes in those dedicated studies were small – between 10 and 15 patients each – and I am wary of these sizes. so I’m not suggesting this is definitive epidemiology. But the consistency is difficult to ignore. It is a problem for many that is clear to me. It is a problem for me too.
Reading those papers was strangely reassuring. The research at least lets me feel I am not alone.
It looks less like people with PSP occasionally mention light sensitivity and more like many of us experience it – but nobody asks unless someone deliberately goes looking.
That gap between what routine clinical assessment captures and what patients actually live with is something I’ve come to recognise in PSP more generally.
Can Anything Help?
Unfortunately, there isn’t a treatment that simply switches photophobia off. Instead, treatment focuses on reducing its impact.
For me, sunglasses have become an assistive device rather than a fashion accessory. I have a pair of rose-tinted glasses on order, specifically designed for people with migraine and photophobia. They work well for some people, so we’ll see.
Other strategies include reducing glare, adjusting lighting at home, treating dry eyes where appropriate, wearing hats or visors outdoors, and as mentioned above, using specially tinted lenses recommended by an eye specialist. In fact, I’m speaking to my doctor about this today.
Like so much in PSP, there is no single solution that works for everyone. Finding what helps is often a process of trial and error.
Looking Ahead
One of the things PSP has taught me is that symptoms rarely stay the same.
Yesterday, I could barely keep my eyes open.
Today, I prayed and read wearing sunglasses.
Tomorrow?
I honestly don’t know.
But I do know this.
I’ve learned to celebrate the good days without taking them for granted, and to endure the difficult days knowing they won’t necessarily last forever.
So yes.
I’ve always been “photophobic.”
I just never realised the word would one day describe my life.
On a lighter note, I just got a call to pay for an upgrade to the mattress on the hospital bed.
Happy days.
