Happy to be here! I went to Washington DC to advocate for us
Most sun allergies present primarily as skin conditions. However – I’m one of a rare group of people who have #SolarUrticaria who experience more severe systemic reactions and a much, much milder rash.
Yes – my skin burns and blossoms with a rash that looks like someone’s painted a damask pattern in bright pink on my pale skin. It feels tight, dry, hot, wrong. But my rash doesn’t hold a candle to my systemic symptoms.
Because the rash often fades in less than an hour, but the systemic symptoms can persist for two or three days. I’d trade the burning pain of my rash for a few more hours if it could help me escape the migraines, chills, tremors, fatigue, nausea, and lightheadedness I often fight for days after a reaction. My experience with solar urticaria is unique, but it sheds light on the idea that a sun allergy is so drastically different from a sun burn and that it really isn’t always a skin condition.
I’ve met only a handful of people with any photosensitivity before and no one who experiences systemic reactions like I do. I want to reach out and bring solidarity and encouragement to anyone else out there who’s sun allergy isn’t just about burning skin but about non-dermatological symptoms that can be just as incapacitating.
I’m a musician. So I listen to way, way too much music.
I first heard “Thank You, New York” some time last year. It’s a “Song of the Week” from Live from Here (formerly Prairie Home Companion). It’s about a city, but the line “Did you think 11 rounds would be enough to knock us down?” resonated with me on a personal level.
Another lyric that resonates with me for a similar reason is the line “Hold your head up, you silly girl, look what you’ve done. When you find yourself in the thick of it, help yourself to a bit of what is all around you” from the Beatles “Martha, My Dear.”
With #SolarUrticaria it can often feel like you’re fighting a battle that never ends. You think you’ve got things under control and then suddenly the UV index spikes, or you can’t find a close parking space, or you realize you haven’t tied your headscarf right and you’re getting sun on your neck, and suddenly nothing is under control anymore.
But I’m a fighter and those line always reminded me that I have what I need to win against my #ChronicIllness and give me faith in the power and resilience of the chronic illness/allergy/#Disability community.
The other lyrics that always resonate with me are from the song “I 89” by I’m With Her.
“If there was another way out I’d take it,
If there was another way down I’d go,
If there was another way other than the highway,
Show me a map, point out the road”
“Everybody wants a piece of me,
Everybody wants to see what I see,
But I can’t just give it to you like that”
Rather than reminding me of my own inner strength, these two stanzas really drive home to me what it feels like to explain your chronic illness to somebody. I’m asked so often if what I experience feels like a sunburn, or why I don’t just “stop” being sick that these two stanzas embody what telling someone about my Solar Urticaria can be like.
Music has been an immense calming force for me and I’m thrilled to share these inspiring and comforting lyrics with The Mighty community!
D&D. What a game. In the 80s people claimed it was evil. In the 90s and the 00s people said it was nerdy. But it’s experiencing a renaissance – one I’ve benefitted from immensely since I started playing last year.
D&D is a brilliant form of escapism. You get to experience stories as yourself – but not necessarily bound by your body. You get to escape to a world that feels nothing like your own, but also just like it. You get to keep the good pieces and do away with the bad…if you want to that is.
I play a disabled character in D&D, and one with an emotional support panda, and I can’t say how much that’s helped me cope with my own #ChronicIllness. Or, if I’m having a really rough day, I play one of my non-disabled characters and get to spend one (or four!) hours thinking about life without #SolarUrticaria or #Anxiety.
I face my illnesses every second I’m awake. But with D&D I don’t have to. I can spend time thinking about life and adventure without once having to think about SPF. And that is amazingly freeing.
I have #SolarUrticaria. It’s a chronic condition that effects my ability to cope with UVA light.
But my experience with an ovarian cyst is entirely unrelated to my solar urticaria – and thereby largely unrelated to what I typically write about here on the mighty.
But it’s an experience that won’t easily fade from my memory – and as such one I wanted to share here.
It was the first time I ever went to the ER for pain. I’d gone for a broken bone once before. And once after a car accident as a precautionary measure. But as I sat in my mom’s car – after she’d blessedly been able to pick me up from work when I realized I really couldn’t drive – I knew that this pain was severe enough to warrant a doctor’s attention. Right. Now.
We got to the ER and waited ten minutes before anyone even spoke to me. I watched other patients – all seemingly a bit listless but generally alright – get processed and triaged and start talking to doctors – as I sat in a wheelchair, shaking with pain, dripping sweat, still in my pencil skirt and sweater, still under banks of fluorescent light that would cause a flare in my solar urticaria, repeating to my mom, over and over again, “It hurts. It hurts really badly.”
I made it to triage where my blood was taken and an IV port readied – it remained unused and that bruise looks liable to last me for a while – before anyone asked me my current pain level. Not that it wasn’t obvious. I was curled up in a ball and trembling.
I was handed “the smallest gown they could find” which fell off my shoulders and left me functionally naked no matter how I tried to tie it. Asked if they could grab me a pediatric size so I could stay more covered – for modesty and to protect my skin – and hopefully a bit warmer and the response was “maybe.” It never appeared.
I repeated – a dozen times it seemed – my symptoms. And I assured one nurse after another that no, I definitely wasn’t pregnant.
I arrived at the small, relatively quiet ER at 1:30. I didn’t make it to a room – where I could finally get away from the UV releasing fluorescent lighting and throw an extra sheet over my mostly naked body – until after 3:00. Not once was I offered anything for pain.
Around 3:00 my symptoms started to abate a bit. I could get off sentences more easily now. I could sit up without shaking violently. At 4:30 – by which point symptoms had abated a good deal – a doctor came in and finally took a look. He checked everything briefly but thoroughly, mentioned that there were red blood cells in my urine – I had to remind him that’s because I was on my period – and then – praise – brought me a ginger ale to try and cut down a bit of the nausea.
He returned about an hour later with a diagnosis. An ovarian cyst – possibly caused by undiagnosed #Endometriosis – had ruptured. I was sent home with instructions to take a lot of ibuprofen and go see my OB-GYN.
While everyone I interacted with at the ER was pleasant and did their job effectively one thing just stuck in my mind.
Why – as a young woman clearly in severe acute pain – was I not treated with any level of urgency?
Had I just experienced the dismissal of female pain so rampant in our medical system?
I’d heard – from half a dozen other women – that having an ovarian cyst rupture can be comparable to unmedicated active labor. And yet I heard the doctor – through the curtains of triage – spending a long time with an elderly patient who “had just felt a bit listless for a few weeks and thought maybe her stool had slightly changed color” – while I’d only had my temperature taken.
The doctor who eventually worked with me was phenomenal. The triage nurse who finally came was very kind. But I can’t help but wonder – would I have received faster care if I hadn’t come in as a young woman in gynecological pain?
I’ve never had someone to talk to about #SolarUrticaria friendly fashion. Never.
Sure I’d chat with my mom, sister, mentor or friends. But they didn’t get it. They talked about covering up with care, but with a level of ignorance that made it necessary to take all their suggestions with a grain of salt. One day I finally asked my mom how she’d feel if she had to alter every piece of clothing she purchased and add a layer to go outside every single time regardless of the season. She stopped suggesting dresses with slits and ones that required cardigans shortly thereafter.
But yesterday my experience with modest/photosensitivity-friendly fashion changed. Yesterday I actually got to talk to someone about how to keep my skin covered. Someone who’d been doing it herself for years.
She’s a new coworker who came onto our team at work about a month ago. She’s not allergic to the sun, but she wears a hijab. And so our clothing requirements are almost identical.
Like me she needs all her skin covered by non-sheer fabric. Like me she needs to do this even in the summer. Like me she’s in her 20s and likes to be trendy. We both prefer harem pants and love maxi dresses. We both understand the requirements of our workplace when it comes to personal style.
We talked for half an hour because we were so excited. And at the end of our chat – after I expressed the #Anxiety I often feel when trying to keep covered – she said, “Don’t worry. I’ve been doing this my whole life and I still have a lot to learn.”
And I cannot even articulate how much more confident it made me feel to finally talk to someone who understood what working in advertising feels like when you can’t have bare skin. And I’m eternally grateful for that.
#SolarUrticaria requires me to cover my skin completely if I want to even consider going outside or to an area with fluorescent light (read…pretty much anywhere other than my house or my own office).
I typically wear maxi dresses with long sleeves, sweaters and maxi skirts, or button downs and harem pants. And, to protect my face, I always have a headscarf.
I live near the largest Middle Eastern population outside of the Middle East. And this has fundamentally shaped my experience wearing a scarf around my head and clothes that cover my entire body.
You see…I’m ridiculously ethnically ambiguous. If I put my hair into two braids and grab a denim shirt I can easily pass as Native American. Pull my hair into a bun and throw on a bit of blush and I look very Celtic. Put on a headscarf and the guesses are typically Iranian or Jordanian.
I speak a bit of Arabic and this combined with my typical appearance has allowed me entry into an amazing community of Middle Eastern Americans. I get faster service in Middle Eastern restaurants; my boyfriend and I are welcomed as “my friends” at our favorite coffee shop (run by an Amazing Yemeni family); I get those sweet “we’re in this together” smiles from Arabic women.
My solar urticaria can be brutal. And covering all of my skin can feel taxing. But those smiles make it worth it. Because I can help someone who might feel ostracized have a happier day. And that’s worth a lot.
My town is home to one of the highest profile and highest speed boat races in the world. One top class is powered by NASCAR engines, the other by jet turbines. They boats reach speeds of over 200 miles an hour in the straights.
And there are a lot of options to watch the races for free. But boat races being what they are, every single option under $100 per person requires going in the sun.
I wasn’t going to miss these races again – I’ve missed five years as I worked through diagnosis and establishing treatment options – so yesterday, though I knew it would cause a flare, I went to the local state park and set up camp.
I spent about 90 minutes outside and the UV index (not accounting for reflection) was around an 8.
I definitely had a reaction – but I didn’t pass out, vomit, or otherwise end up in the hospital – so it was definitely a win.
Here’s how I did it and what I’d change…
1) Transit – we took my mom’s SUV which has full UV protective window tint and a nice big, comfy backseat
2) Shade – we brought one of my umbrellas that has a spiral mount you can screw into the dirt and set that up underneath the shade of an existing tree, I also carried a small UV protective parasol to use for intermittent sun
3) Clothing – I wore black harem pants, an Under Armor hot weather running shirt, a silk blouse over that, a pair of nylon sneakers, a white headscarf and a gray baseball cap
4) Sunscreen – I put a thin layer of La Roche Posay SPF 30 on my face, ears and neck
5) Hydration – I brought one can of a ginger flavored, no sugar added seltzer water
What I’d change…
While generally yesterday was a success I’d like to point out a couple things I’d change to make it work even better!
1) Bring an extra umbrella – I wanted more space!
2) Bring more hydration
3) Bring cool packs (I always need these and I always forget!)
4) Skip the sunscreen – it wasn’t a high enough SPF to prevent a rash and the bit of oil on my skin made it harder for my sweat to evaporate
5) More opaque scarf – I just ordered a couple jersey ones from Haute Hijab and think they will make a huge difference!
6) Wear a skirt rather than pants – heat exhaustion is a huge risk with #SolarUrticaria and skirts allow for more temperature transfer
Not directly related to my Solar Urticaria - though the thought of so much fluorescent light definitely makes it worse - but definitely spiking my anxiety! Tomorrow I have an appointment to have 4 moles looked at (2 that are 100% going to be removed). I'm very squeamish and very nervous and knew this would be the place to come for reassurance and support!
#SolarUrticaria #Anxiety #ChronicIllness #MentalHealth
Happy #RareDiseaseDay to all of my fellow zebras (Rare Disease patients). This year, I’m raising awareness for the 3 rare diseases that affect me every day. I live with a rare, genetic heart condition called Long QT Syndrome that places me at high risk of sudden cardiac arrest. Because of this, I have a defibrillator/pacemaker combination device implanted to shock my heart back into the proper rhythm when this occurs. Only less than 1% of those with the already rare diagnosis of Long QT Syndrome will have Long QT Type 5 like my family. Our specific gene mutation has also never been seen before. I also have Solar Urticaria, a rare severe allergy to ultraviolet light and sunlight. I’m allergic to UVA, UVB, and some types of visible light such as black light. I still react through windows, in the shade, and through clouds. It severely limits my life, essentially forcing me to “live in the dark”. There are very limited treatment options. Finally, I live with Hypermobile Ehlers Danlos Syndrome, a genetic connective tissue disorder making my joints come out of place and be very unstable. It also causes me to be in severe chronic pain 24/7 in my joints. I fall easily. I cannot walk far and use a cane, knee braces, ankle braces, wrist braces, and a jaw splint to try to support my joints. If I have to walk far, I require a wheelchair or mobility scooter. I am #RareAndMighty
#EhlersDanlosSyndrome #ChronicPain #CongenitalHeartCondition #HeartCondition #HeartDefect #Arrhythmia #ChronicIllness #RareDisease