I have written about almost every part of my body and health over the years. I have covered ASD, various diagnoses, mental health struggles, FSHD at every stage, disability, harm, thirty years of lived experience, and even personal battles like alcoholism and staying sober. Yet somehow, I have never written about the one condition that has followed me quietly through most of my life. It affects me all year round, although far more in warm weather. Polymorphic Light Eruption.
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| [Image 2. A patch of skin with redness and small raised bumps. The area looks inflamed and irritated, showing the typical reaction pattern of my photosensitive skin condition.] |
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| [Image 3. The back of my hand shows multiple small red spots and bumps. They vary in size and appear inflamed, representing how the condition affects exposed areas like my hands.] |
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| [Image 4. The back of my neck and scalp area show redness and irritation with small raised spots. This is one of the most sensitive areas when my photosensitivity flares.] |
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| [Image 5. A close view of irritated skin showing redness and scattered bumps. The uneven colour and raised spots highlight the inflammation typical of polymorphic light eruption.] |
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| [Image 6. A close view of my arm with scattered red bumps and areas of irritation. The skin shows mild inflammation and uneven tone, which is typical of how my photosensitive skin condition appears on my arms.] |
These red bumps, spots, blisters, and patches of irritated skin have been with me so long that I do not remember when it started.
My first clear memory of it was a trip to Margate when I was twenty. I was sunburnt, peeling, uncomfortable, and covered in bumps across my hands and arms. They were angry, raised, and impossible to ignore. Nothing helped. I may have had it earlier, but that was the first time I remember thinking, “This is not normal.” I am forty‑three now. That was a long time ago.
The pattern has stayed the same. Red, thick bumps and spots. Small blister tops that ooze clear, sticky liquid when they are popped, scratched, or accidentally caught. Swelling. Heat. Itching that wakes me up. I try not to scratch, although I do it in my sleep. The photos above were from 2020, and they were not even the worst. They were simply the ones I captured on a day they were inflamed.
The condition is a form of photosensitivity, like polymorphic light eruption (PMLE). PMLE is one of the most common reactions to sunlight. The skin becomes hypersensitive to UV light, even in small amounts. It can appear as red bumps, spots, raised patches, or blisters. The clear fluid is serous fluid, something the body produces during inflammation. It is unpleasant, although normal for this kind of reaction.
What makes it harder is that it does not only happen in summer. I get it all year. Heat makes it worse. Even travelling in a car with sunlight hitting one small area can trigger a flare. UV‑A light passes through windows, so “not being in the sun” does not protect me. My hands and neck are the worst, although it appears on my forehead when I am not wearing a hat, on my arms when they are exposed, and anywhere that gets direct sunlight.
Clothing becomes a strategy. I do not wear shorts or T‑shirts. Covering my body is the main plan. Jeans are my balance between warmth and coolness, especially when I am in my powerchair and my legs do not move much and a breeze hits them. Long‑sleeved cotton shirts are my best option. They cover my arms, keep me cool, and protect my skin. Cardigans are impossible in this heat, although if it is sunny and cooler, a thin cardigan can help. Sun cream helps, although it has to be high, like the factor 70 I am using. Aloe vera and Cetraben soothe the skin, reduce itching, and calm the most swollen areas. I do what I can, as often as I can.
Living with FSHD means I already balance my days carefully. Adding this condition makes everything harder. It is not the same as my muscular dystrophy pain. I am used to that. I know how to sit, adapt, and manage it. This is different. This is the kind of discomfort that gets under your skin, literally and emotionally. It is like earache or toothache. It is small, but relentless. It becomes a nuisance and an irritant. Pain is pain. Everyone has their limit. I never compare one person’s struggle to another’s. I measure by tolerance, and this tests mine. Anything that anyone has to go through that is not part of their daily battle is always worth acknowledging.
The medical explanation is simple. The lived experience is not. Photosensitive conditions can flare with:
• UV exposure
• heat
• sweat
• friction
• stress
• certain medications
• reflections from water or glass
They can appear hours or days after exposure. They can last for weeks, can scar, and disrupt sleep, routine, and confidence. They can make you feel like your own skin is working against you.
This is why I wanted to write about it now. Not because it is new, but because it has been part of my life for so long without ever being spoken about. Most information online is medical rather than lived experience. It is important that I document it. These bumps and blisters are not dramatic. They are not life‑threatening. They are not the headline condition in my story. Yet they shape my days, my clothing, my comfort, and my choices.
I live with a progressive muscle disease and disability that causes chronic, daily pain, although I also live with this. It is time it had a place on the page.
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