M.A. Hoak

@meganhoak | contributor
M.A. Hoak is allergic to light, the kyriarchy, and general asshattery. She holds an MFA in Writing from Vermont College of Fine Arts. Her poetry can be found in The Rumpus, Brave Voices Magazine, The Saw Palm, and Culturework Magazine.
M.A. Hoak

Rita Farr: Doom Patrol’s Superheroine With Chronic Illness

There are so many things to love about HBO’s take on “Doom Patrol” member Rita Farr (aka Elasti-Girl): her gloriously retro 1950s clothing, hair, and makeup; her status as an active character who, despite her struggles with anxiety, grows as a person and starts taking on a leadership role (especially in Season 2); and her complex, fully-developed, flaw-filled backstory*, which serves as the source of her compassion for others — even difficult characters like The Chief. But the thing I love most about Rita is likely to go unnoticed by healthy, able-bodied viewers: to my knowledge, she’s the only superhero on television living with a chronic illness. Illness of any kind, chronic or otherwise, is exceedingly rare in the world of superheroes. It’s often considered antithetical to their very nature. Godlike, superhuman beings don’t get sick. Or, if they do, it’s temporary and part of how their superpowers work — like how Superman experiences a variety of muscular weakness, pain and anaphylactic-like symptoms in the presence of green Kryptonite. Three notable exceptions to this rule are Mar-Vell (Captain Marvel), Clark Kent (All-Star Superman), and Dr. Jane Foster (Thor), all of whom develop and eventually die from cancer. I cannot and will not begin to speculate about whether it is more difficult to represent terminal illnesses or chronic illnesses. I will say, however, that it’s important to recognize that each of these experiences are different, which is why it’s important for comic and TV writers to create more characters that represent these experiences accurately and without stigma. Eric Nierstedt elaborates on this need in his article Superhero Sickness: Why Showing Disease in Comics Matters: “Readers gain new understanding from seeing their heroes deal with disease, but that’s not all they see. Jane Foster knows that she is dying, and that being Thor is speeding up the process. Yet she has no hesitation in swinging the hammer and saving lives…Why do we read comics that show us people dealing with disease, hardship, and even their own mortality? Because comics show us the people we wish we could be.” Rita, like all of the members of the Doom Patrol, has been forever altered by the mysterious accident that gave her super “powers.” But unlike traditional heroes, who are healthy and actually benefit from their transformations, Rita — just like the 54 million real-life women in the U.S. who live with chronic illness — experiences unpredictable and debilitating side effects from her condition. Rita has little, if any, real control over when her oozing blob form takes over, a powerlessness many people living with chronic illness are intimately familiar with. Furthermore, Rita’s goop-a-rific-ness is triggered by anxiety and stress, which can exacerbate a myriad of autoimmune and connective tissue disorders, including lupus, rheumatoid arthritis, fibromyalgia, and Ehlers-Danlos syndrome**. Even her issues with food — her discussion with Vic on the road trip to Paraguay about how her diet has gotten “out of control” post-accident (Season 1, Ep. 3) — and the fact that her weight/size fluctuates dramatically directly mirrors the challenges many chronic illness patients face when dealing with complex dietary issues or side-effects from life-saving medications. However, there is far more to Rita Farr than just her struggles. What makes Rita a particularly powerful and positive example of a superhero living with chronic illness is how she eventually faces and works to overcome her own internalized ableism. In the first episode of Season 1, there’s a particularly uncomfortable scene in which a highly privileged and white Rita demands that a Black, disabled cameraman be fired because she’s repulsed by the sight of his severed arm. Aside from smacking of colonialism and racism, this moment also reveals Rita’s intense ableism. Her accidental transformation into a monstrous, gelatinous blob just a few days later is a classic example of ironic hell. Initially, Rita frequently refers to her condition as “hideous” and “disgusting;” when Larry feels guilty after running from Rita in her altered form, she consoles him by saying, “I’d run from me too if I could” (Season 1, Ep. 2). But Rita doesn’t stay there, wallowing in a pit of self-pity and despair. Instead, as the season progresses, she is forced to face her internalized ableism head-on. After an encounter with her former lover, Steve Dayton, she acknowledges that she was “a monster long before the accident.” She acknowledges her mistakes, and instead of loathing her atypical and unpredictable body, decides to be the best “pile of goo” she can be. Rita’s decision mirrors the choice many spoonies must face daily: will we dissolve into a puddle of sorrow, anxiety and self-loathing because of our condition? Or will we embrace the “new” us — our post-health, chronically-ill selves — and do the best we can? Rita’s representation isn’t perfect; then again, neither is she. This is why, as a chronically ill person, seeing Rita struggle, fail and try again means so much to me. I can only hope as I lie on my couch, with a heating pad and pain medication in front of the TV, that Rita is just the first of many superheroes that finally represent women like me. —– * In her earlier iterations, Rita was often depicted as a passive, damsel-esque character trapped in an abusive relationship with Steve Dayton (AKA Mento). To say that her portrayal was sexist and problematic would be an understatement. ** Autoimmune illnesses and connective tissue diseases also disproportionately affect women.

M.A. Hoak

Rita Farr: Doom Patrol’s Superheroine With Chronic Illness

There are so many things to love about HBO’s take on “Doom Patrol” member Rita Farr (aka Elasti-Girl): her gloriously retro 1950s clothing, hair, and makeup; her status as an active character who, despite her struggles with anxiety, grows as a person and starts taking on a leadership role (especially in Season 2); and her complex, fully-developed, flaw-filled backstory*, which serves as the source of her compassion for others — even difficult characters like The Chief. But the thing I love most about Rita is likely to go unnoticed by healthy, able-bodied viewers: to my knowledge, she’s the only superhero on television living with a chronic illness. Illness of any kind, chronic or otherwise, is exceedingly rare in the world of superheroes. It’s often considered antithetical to their very nature. Godlike, superhuman beings don’t get sick. Or, if they do, it’s temporary and part of how their superpowers work — like how Superman experiences a variety of muscular weakness, pain and anaphylactic-like symptoms in the presence of green Kryptonite. Three notable exceptions to this rule are Mar-Vell (Captain Marvel), Clark Kent (All-Star Superman), and Dr. Jane Foster (Thor), all of whom develop and eventually die from cancer. I cannot and will not begin to speculate about whether it is more difficult to represent terminal illnesses or chronic illnesses. I will say, however, that it’s important to recognize that each of these experiences are different, which is why it’s important for comic and TV writers to create more characters that represent these experiences accurately and without stigma. Eric Nierstedt elaborates on this need in his article Superhero Sickness: Why Showing Disease in Comics Matters: “Readers gain new understanding from seeing their heroes deal with disease, but that’s not all they see. Jane Foster knows that she is dying, and that being Thor is speeding up the process. Yet she has no hesitation in swinging the hammer and saving lives…Why do we read comics that show us people dealing with disease, hardship, and even their own mortality? Because comics show us the people we wish we could be.” Rita, like all of the members of the Doom Patrol, has been forever altered by the mysterious accident that gave her super “powers.” But unlike traditional heroes, who are healthy and actually benefit from their transformations, Rita — just like the 54 million real-life women in the U.S. who live with chronic illness — experiences unpredictable and debilitating side effects from her condition. Rita has little, if any, real control over when her oozing blob form takes over, a powerlessness many people living with chronic illness are intimately familiar with. Furthermore, Rita’s goop-a-rific-ness is triggered by anxiety and stress, which can exacerbate a myriad of autoimmune and connective tissue disorders, including lupus, rheumatoid arthritis, fibromyalgia, and Ehlers-Danlos syndrome**. Even her issues with food — her discussion with Vic on the road trip to Paraguay about how her diet has gotten “out of control” post-accident (Season 1, Ep. 3) — and the fact that her weight/size fluctuates dramatically directly mirrors the challenges many chronic illness patients face when dealing with complex dietary issues or side-effects from life-saving medications. However, there is far more to Rita Farr than just her struggles. What makes Rita a particularly powerful and positive example of a superhero living with chronic illness is how she eventually faces and works to overcome her own internalized ableism. In the first episode of Season 1, there’s a particularly uncomfortable scene in which a highly privileged and white Rita demands that a Black, disabled cameraman be fired because she’s repulsed by the sight of his severed arm. Aside from smacking of colonialism and racism, this moment also reveals Rita’s intense ableism. Her accidental transformation into a monstrous, gelatinous blob just a few days later is a classic example of ironic hell. Initially, Rita frequently refers to her condition as “hideous” and “disgusting;” when Larry feels guilty after running from Rita in her altered form, she consoles him by saying, “I’d run from me too if I could” (Season 1, Ep. 2). But Rita doesn’t stay there, wallowing in a pit of self-pity and despair. Instead, as the season progresses, she is forced to face her internalized ableism head-on. After an encounter with her former lover, Steve Dayton, she acknowledges that she was “a monster long before the accident.” She acknowledges her mistakes, and instead of loathing her atypical and unpredictable body, decides to be the best “pile of goo” she can be. Rita’s decision mirrors the choice many spoonies must face daily: will we dissolve into a puddle of sorrow, anxiety and self-loathing because of our condition? Or will we embrace the “new” us — our post-health, chronically-ill selves — and do the best we can? Rita’s representation isn’t perfect; then again, neither is she. This is why, as a chronically ill person, seeing Rita struggle, fail and try again means so much to me. I can only hope as I lie on my couch, with a heating pad and pain medication in front of the TV, that Rita is just the first of many superheroes that finally represent women like me. —– * In her earlier iterations, Rita was often depicted as a passive, damsel-esque character trapped in an abusive relationship with Steve Dayton (AKA Mento). To say that her portrayal was sexist and problematic would be an understatement. ** Autoimmune illnesses and connective tissue diseases also disproportionately affect women.

Grace R.
Grace R. @gracer
contributor

Having Photosensitivity and Finding Fashionable Clothing

I’m 22 years old. I work in advertising. I wear bright lipstick and high heels. And I cannot – for the life of me – find sun-protective clothing that fits into my world. I’ve struggled for years with the current selection of sun-protective clothes. Most don’t cover all of your skin (why are there so many short-sleeved shirts and knee-length dresses)? Most don’t come in my size (it’s shocking how few brands acknowledge people below a size two or four). And almost all look “medical-type” clothing. In other words, it looks like you’d wear it because you had to — not because you wanted to. I go to a heck of a lot of trouble to keep my illness invisible. I’m vibrant and active and I don’t want my solar urticaria to define me or attract attention. I can’t change the color of my skin. I can’t stop wearing my medical IDs. I can’t go out in the sun. I’d greatly appreciate it if the sun-protective clothing industry got on the bandwagon and understood that I don’t want to advertise my condition in my clothing any more than necessary. But I need solutions now, so I’ve gotten creative. The modest fashion scene is growing — rapidly — and that’s one place I feel very comfortable and at home. Long-sleeved and opaque maxi dresses are easy to find, well-designed and attractive. They pair nicely with my headscarves, since many are specifically designed to do so. Oftentimes the fabric is specifically engineered to keep you cool in the hot climates of the Arabian Peninsula. Macy’s Verona collection has been life-changing for me. I don’t have to try and find non-task-built clothing that happens to cover all my skin. I can instead purchase dresses/abayas designed specifically to keep your skin covered while helping you embrace your style. I’m hoping the fashion industry expands. Or that the sun-protective clothing industry takes a hint, but in the meantime, for all my photosensitive friends, check out the Verona Collection and see all the possibilities. Do you have photosensitivity? What clothing brands do you recommend?

Grace R.
Grace R. @gracer
contributor

Advice for Living With Solar Urticaria

There is no cure for solar urticaria. There is no real treatment besides avoiding the sun, which can prove impossible in an active, normal life. While reactions are nearly inevitable even in cold, cloudy Michigan, I can reduce the frequency and severity by taking precautions. For a while I struggled with these precautions. Now, I’m learning to love them. The two biggest ways I protect myself are with clothing and window film on my car. The window film was never a touchy subject for me. I take one of two cars (working on upping it to three) everywhere I go because we’ve invested in UV filtering window tint that protects my skin. It’s easy. It’s low-stress. I love it. Clothing was a harder pill to swallow. I was officially diagnosed with solar urticaria at age 17, after about six years of having frequent reactions. Any woman can tell you that 17-year-olds don’t have the greatest self-esteem, and realizing that I had to cover my skin to avoid getting sick wasn’t easy to get my head around. I used sunscreen extensively for a few years, staining everything I owned, giving myself chemical burns. And then finally, when I was overtired and using a dish sponge to scrub the sunscreen residue off my skin one night, my older sister handed me a maxi dress and a cardigan from her closet. “Try it,” she said. I did. It worked. But I wasn’t comfortable in it. Not yet. It took another two years for me to get comfortable in my long sleeves and maxi dresses. I grew my pixie cut out long because I felt it matched the “look” better. I embraced the fact that my milky skin and floor length skirts had an archaic, artsy vibe. I started adding graphic tees under my chambray blouses and knit cardigans, wearing Stevie Nicks-esque, long-sleeved, hippie dresses, realizing that it was really no more limiting than most people’s “uniform” of jeans and tops. I added sun hats soon after — finally finding one I liked, one that made me feel confident. After sun hats I started using parasols — usually when I hiked and a sun hat would have kept too much warmth in and risked heat exhaustion, but sometimes as an everyday precaution too. It took a while for me to get comfortable with how much space it took up as I would walk with one. I’m still not used to people earnestly pointing out to me that it’s not raining, but eventually I realized that a strategy that provided heat reduction and UV protection was too good to pass up. And after parasols, after one too many mild reactions after spending time in fluorescent light, I started wearing headscarves. I was uncomfortable with it at first. More uncomfortable than I’d been with the maxi dresses, and more uncomfortable than I’d been with the hats or the parasol. Because I started wearing headscarves when I lived — not home in a big city — but in a rural college town, it didn’t seem as though my campus had ever considered the idea, let alone seen it. I felt eyes on me all the time. Little by little, especially now that I’m done with school and back in the city, I’m learning to love this newest treatment option too. If you’re looking for good resources and options for covering your skin, I recommend the following: For bathing suits: Lands EndFor hats: Braxton (casual) Moosejaw (athletic)For maxi dresses: Pink Blush, Asos, Banana Republic, Gap, Macy’s Verona CollectionFor scarves: Ann Taylor, Ann Taylor Loft

Paige Wyant

17 Products People With Photosensitivity Use During the Summer

For many in our chronic illness community, the heat and light of summer is dreaded rather than eagerly anticipated. Photosensitivity – or a sensitivity to light – can be caused by a number of chronic conditions or even medications. Some people may have conditions such as solar urticaria or chemical photosensitivity, which primarily cause an adverse immune reaction to sunlight, while others may have an illness such as systemic lupus erythematosus (SLE) or migraine in which photosensitivity is one of many symptoms experienced. Regardless of the cause, photosensitivity can make it extremely challenging to function outside your home or participate in day-to-day tasks and activities, especially during those sunny summer months. While it is certainly an option (and in some cases, a necessity) to stay indoors and avoid sunlight completely, we wanted to know how our community protects against harmful light when they want or need to venture out of the shade. So, we asked those in our Mighty community with photosensitivity to share what products they use during the summer to protect against UV rays. Here are their recommendations. 1. UV Cloth Umbrella Many people may only grab an umbrella when it’s raining, but umbrellas can also be perfect for blocking out sunlight. The umbrella above has a silver coating to reflect heat and provides 55+ UPF for the highest protection from UVA, UVB and UVC rays. “ I use a sunbrella,” said Michelle Malley. “An umbrella made with UV cloth. Also works for rain. I just searched ‘UV umbrella’ on Amazon.” Buy the umbrella above for $24.99 from Amazon. 2. Reel Legends Reel Legends clothing is made to wick away moisture and keep you cool while also providing sun protection. The shirt featured above provides UPF 40 sun protection, a mesh-like panel on the back and quick dry technology. “ Reel Legends, sold by Bealls stores,” recommended Rebecca Faust. “My brother has worn them for years as an avid fisherman and recommended the brand to me when I developed lupus.” Buy the shirt above for $14.99 from Bealls. 3. Neutrogena Sunscreen This sunscreen has 100+ SPF to protect against UVA/UVB rays, and is made with Dry-Touch technology so it’s light and sheer, and doesn’t look or feel greasy on your skin (especially helpful if you’re using it on your face!). It is also water-resistant for up to 80 minutes. Nikki Osterman wrote, “ Neutrogena 100+ SPF mixed into my foundation for face and neck and mixed into lotion for arms and chest. UV blocking umbrella and super sexy glaucoma shades if it’s still too sunny for regular dark glasses that day. A scarf over well thought-out clothes to avoid heat/sun rash and sometimes still dashing from shadow to shade like a bad spy.” Buy the sunscreen above for $7.70 from Amazon. 4. Columbia Columbia makes a range of sports and outdoor wear for men and women, with many pieces of clothing offering sun protection. The women’s shirt above features UPF 50 sun protection, moisture-wicking fabric and Omni Shade technology that reflects the sun. “ Columbia has started making light and airy SPF clothing and I love it!” said Katie Pintos. “ Columbia and REI makes their own clothing with SPF,” added Kelly Valentine. Buy the shirt above for $35 from Columbia. 5. Reflective Window Tint This non-adhesive, reflective film functions like a one-way mirror, giving you privacy without having to close your blinds. It’s perfect for keeping your home or office cool during the summer, as it blocks out 90 percent of infrared rays and 85 percent of UV rays. Katrina Cox Orr recommended, “ Mirror reflective window tints (really easy to install with a spray bottle) and they keep the cooling bill down. Sun blocking curtains are great too. Get stick-on Velcro for connecting curtains and swags to block light gaps.” Buy the window tint above for $28.66 from Amazon. 6. Solumbra Solumbra carries sun protective clothing and accessories that are lightweight, moisture-wicking and 100+ SPF. “Solumbra,” recommended Eileen M. Kelly. “Expensive but they last forever! Mine are 15 years old!” Buy the wide-brimmed hat above for $74.95 from Solumbra. 7. SunGuard SunGuard is a laundry aid that washes an invisible shield into your clothing and claims to help block more than 96 percent of the sun’s harmful rays from reaching your skin. It can boost the UPF protection of a white cotton T-shirt from UPF 5 to UPF 30. Recommended by Danielle Broussard. Buy the laundry aid above for $6.19 from Amazon. 8. Guy Harvey Guy Harvey carries nautical-themed clothing and accessories for both men and women, most of which is designed for the beach, watersports, etc. The performance shirt featured above is UPF 30+, anti-microbial and moisture-wicking. “ Reel Legends and Guy Harvey fishing sport shirts are amazing!” said Liz Jordan. Buy the performance shirt above for $45 from Guy Harvey. 9. Solar Shield If your eyes are photosensitive, these polarized sunglasses provide 100 percent UVA/UVB protection and fit over your regular sunglasses. “ Solar Shield sunglasses,” recommended Elsie Gordon. “They fit right over top of my glasses then sit on top of my head when I don’t need them. I tried lenses that change tints but they don’t change fast enough. Prescription sunglasses had to be swapped out for regular glasses when I went indoors. These make light sensitivity easier to deal with.” “ My photosensitivity is mainly a vision issue, glare and intensely bright sunlight can trigger blinding migraines,” said Cassandra Paquin. “While I don’t have a specific brand, my prescription sunglasses with super-dark photosensitive finish are all that stands between me enjoying travel and recreation with my family and a debilitating migraine that steals the day.” Buy the sunglasses above for $26.95 from Solar Shield. 10. Lands’ End Lands’ End offers a wide range of styles for men and women, from colorful sundresses to activewear and outerwear. The pants featured above are made with a stretchy fabric and water-resistant finish, and provide UPF 50 sun protection. Emily Benedetti said, “ I love Maurice’s and Lands’ End basics.” “Lands’ End!” recommended Debby Ritenbaugh Brown. “100 SPF tops and 50 SPF pants. I live in them.” Buy the active cargo pants above for $69.95 from Lands’ End. 11. Gold Bond Medicated Cream Although this lotion won’t protect you from the sun, it can be helpful if your skin does get irritated from exposure. This soothing lotion moisturizes dry skin, relieves itching and cools with aloe and vitamin E. “ A UV parasol to keep the sun at bay and Gold Bond medicated cream for the sun that sometimes does get through that causes hives upon my skin,” wrote Joyll Cambridge. Buy the body lotion above for $20.84 from Amazon. 12. LuLaRoe LuLaRoe offers a range of colorful and comfortable clothing for men, women and children. “ I wear LuLaRoe and floppy sun hats,” wrote Sarah J. Marble. Emily Petty Bray added, “ I wear LuLaRoe and floppy sun hats or baseball hats. I have a long-sleeved rash guard bathing suit from Amazon for swimming.” To buy LuLaRoe clothing, find a retailer near you on this map. 13. UV Protective Arm Sleeves These arm sleeves not only provide 99.8 percent UV protection, but are designed to protect your muscles, promote blood circulation and cool your skin in the heat. “I wear the arm sleeves that protect from UV rays and never leave the house without a floppy hat or baseball cap and a 50+ SPF sunscreen daily,” Marisa Powers told us. Buy the arm sleeve above for $9.99 from Amazon. 14. Bare Minerals SPF Cream Bare Minerals carries a variety of makeup products, with a number of their foundations, primers and creams containing sun protection. “ Bare Minerals has several SPF products. Prime Time BB Cream SPF 30 [featured above] is my favorite because it also helps control sweat and oil, which is a godsend for those of us who deal with hormonal or medication induced hyperhidrosis,” Meghan Lacienski explained. Buy the primer-cream above for $22 from Bare Minerals. 15. Coolibar Coolibar clothing offers stylish yet protective clothing, with each article being UPF 50+. They have casual, fun clothing as well as pieces made for swimming and watersports. “ I love Coolibar clothing,” said Deborah Paleczny. “Coolibar are great,” added Louise De Silva. “I also wear a hat and SPF 50 block.” Buy the dress above for $89 from Coolibar. 16. TheraSpecs Specifically designed for those who experience migraines and/or photosensitivity, TheraSpecs lenses are precision-tinted to block out certain light and glare (including indoor fluorescent lighting) that could cause a headache or migraine. “ Theraspecs are amazing!” recommended Julie Csaki. “Well, I use them all year round for my migraines, not just in summer, but they make the sunlight darker, almost like it’s sunset all the time. Much easier to cope with.” “Theraspecs or similar FL41 lenses,” added Jonathan Kohl. Buy the glasses above for $99 from Amazon. 17. Coppertone Sunscreen Spray Coppertone sunscreen spray can easily be applied to protect against 97 percent of damaging UV rays. The spray is hypoallergenic and water-resistant for up to 80 minutes. “ Coppertone Oil Free Sunscreen Spray,” said Sheila Wall. “I can spray it on my hair for my scalp, face, feet and all over my skin. It sinks in almost immediately, no rubbing like lotion; and if you buy the oil-free one, it doesn’t stain your clothes with oil droplets. I also wear sunglasses, sun hats and long pants to cover more skin.” Buy the sunscreen spray above for $9.45 from Amazon.