Why These Patients Are Taking Selfies From Their Hospital Beds

Photo: Courtesy of Karolyn Gehrig
After artist and writer Karolyn Gehrig was diagnosed in 2003 with Ehlers-Danlos syndrome, a connective tissue disorder, she began taking selfies during her frequent hospital visits. Gehrig found that her photographs helped her feel empowered and in control despite the often dehumanizing nature of medical environments, and her movement, #hospitalglam was officially born in 2014. Now, using the hashtag, anyone with a disability or chronic illness can post a photo from a medical environment (focused on the person, not the procedure), join the project, and, in the process, raise awareness about chronic and invisible illness. I spoke with Gehrig about her own experience of disability, her long-term hopes for the project and how she hopes to empower people in treatment to take up space and advocate for themselves.

Tell me about why you began #hospitalglam.
"People assume a lot of things about my health because I’m a woman, I don’t look sick outwardly and unfortunately the same assumptions that are made about people in society are made in hospitals as well. We deal with all of those problems in medical spaces. So part of the project is about going into those spaces and holding your space. And enabling you to speak up and guard your space.

"There are photos from a couple of years ago, when I was admitted to the hospital in an emergency. I had pigtails and I don't have anything else on my face but I have bright lipstick on because it was the only thing in my purse. I put on the lipstick because I knew that then everyone around me would be looking at my mouth.Then they would be paying attention when I was able to speak. And in taking that photo of me in the in the bed I kind of marked the frame as my space, and so that became a space in my head they couldn't violate.

"I felt like it was mine, like it helped enforce my bodily autonomy."

What do you want someone to feel when they post a #hospitalglam image?
"I want them to feel the bridge between them and the other people in the project, and [know] they are not alone. I want them to feel connected, and I want them to feel strong for having done it. One of the biggest things that people have said to me is it's really hard to do. And I'm like, I know! That's why I'm so excited whenever I see people post about their experiences and talk about how they felt after doing it. And when you see people who have been doing the project for a long time, [you can see] their photos change and the way they talk about their health changes. There are a couple of people who've done the project for a while and gotten diagnoses after long periods of not having been diagnosed. They’ve bettered their care, gone on to do other projects, and they’ve started other advocacy work. It’s good!"

Can you tell me more about the challenges of living with an invisible illness?
"I think invisible illness is extremely difficult because it's difficult to diagnose and it's difficult to treat. It's not really taken seriously. Friends and family want to be supportive but tend to discount it a little bit because they can't see the markers of illness, so they don't really take it as seriously as someone with all of the traditional markers of disability. Until you get to a certain point where it becomes visible — like if you have gastroparesis and you have a tube, once you get to that point, then you're taken seriously. But until that point, we're not really given the accommodations so we really have to speak up a lot. It's difficult to speak up because we don't really give ourselves the love and care that we need in approaching our own illnesses and the room to accommodate our needs in the world.

"When approaching the outside world and the medical community, because we don't have those visible markers, when we are saying 'Hey, we have a need,' we may feel like we need to overexplain. A quick point of reference is with disabled parking placards. A lot of people feel like they don't want to get them even if they [have a need] because they might get accosted in the parking lot when really it's nobody's business.

"Also I just want people to stop suggesting yoga. Just stop suggesting yoga, that would be great."

Looking at the project, it’s striking to me how strong the images are. The photos aren’t sentimental, and they don’t demand sympathy.
"One of the great things about doing this project is that a lot of people in this project talk about it all the time. They talk about feeling good, feeling strong, and their bodies. A lot of it is about breaking down ableism and feeling really good about themselves going forward. It's just really strong positive stuff. And it's not always positive all the time, like a lot of it is also like, my body feels terrible today and I need to deal with that. But it's very it's honest and it's real and it's people living their lives. I mean, people with disabilities can do anything. And we do."

Was there ever a moment where you struggled to cope?
"The darkest year in my life was the year after I was diagnosed with Ehlers-Danlos. I thought that I would be dead in a couple of years. I thought that there was just a ceiling on everything; there were no possibilities open to me.

"When you're disabled, unless you grow up in a family with other people who are disabled like you, you're still sort of the orphan because you're the only person who is actually disabled and everyone else is kind of dealing with it in their own way. So you don't have the culture that other people grow up with. It's similar to being queer and having to find that culture someplace. But until very recently there's been a lack of disability culture in the media. And so finding that culture has been — and I mean very recently, I mean extremely recently — finding that culture has been very difficult."

You story has resonated with so many people. How does that make you feel?
"When I’m having a really bad day, I go into the hashtag and I look at people and I look at the comments, and that makes me really excited because I like seeing this community that sprang up from it. And I like seeing that and knowing that exists. Because I know that I’m temporary, but I’m hoping that this will exist for a while. I’m happy that people are coming together. I'm hoping that this is a framework that will exist for a while and enable people to create stuff."

Read on to see what #hospitalglam really looks like.
1 of 12
Photo: Via @kristen__noel.
"Visit with my gp was kind of "eh". Exasperation of your disease, I'm afraid to change your meds, maybe more pt, you need a neurologist to work with your neurosurgeon..how are you handling this emotionally? These kind of visits are always harder..it feels non productive and makes you realize things aren't going great.
#ehlersdanlos #chiari #arthritis#autonomic_dysfunction #dysautonomia#autonomic_dysfunction #pots#hospitalgam #dysability"

Via @kristen__noel.
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2 of 12
Photo: Via @pixy_led.
"#hospitalglam while waiting for my psychiatrist. He apologized for the wait and I assured him that I understand and respect the fact that other people require care. We are not going to try medication, which is a relief after the fish oil made me sick. It's also a relief to know he's actually listening to me and believing what I say. Mental health care makes so much more sense now that my mental health providers actually CARE. #mentalhealth #mentallyill#actuallyocd #bipolar #agoraphobia"

Via @pixy_led.
3 of 12
Photo: Via @tiffanyandlupus.
"A solemn but thoughtful #HospitalGlam selfie because a year ago this month I was in the hospital for a week after a kidney biopsy determined I was confirmed with #nephritis. This year I am attending physical therapy bi-weekly to help with pain reduction, strength building, & increased mobility. I saw my nephrologist 3 days ago & she gave me some of the best news I've ever had as far as lupus doctor appointments go. My lab work is showing great results relating to my kidney function & my urinalysis protein count has improved by 70%!!! Which is almost unheard of in the time span of 2 months. This also means I don't have to have the 'chemo talk' with my rheumatologist during my next visit!
Lupus affects so many different aspects of my health, family & friend relationships, finances, and overall life. Even though one of my organs is finally showing slight improvement there are so many other parts of my body that are still struggling. For me to make even this small of an improvement is a blip in the right direction on my health scale! ????? #havecourage #lovethyselfie#invisableillness #disabilityawareness#chronicbabe #lupus #selfcare#iammorethanmydisease #igersnyc#naturalhair #baldisbeautiful #LupusChat#ChronicLife #LupusWarrior #survivor#rheum"

Via @tiffanyandlupus.
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Photo: Via @michelle_roger.
"Hanging at the hospital as you do. The entry way has two lovely stain glass windows. It's a strange turn of events to be content to sit and have my photo taken in a space like this. I've never been good at owning my space throughout my life and when I changed from professional to patient I felt like I lost what little shred of ownership I had. And now here I am reclaining me and my space in a place designed to take it from me. I don't care who sees anymore. I am taking back my power from illness and from the medical system that sees me as little more than a collection of ailments. Doing my best #hospitalglam and staking my claim on my space and my life in the midst of the whispers and the stares of the people flowing past.

#upanddressed in a mix of old and new. Dress and scarf are @ishkahandcrafts#compressionstockings are #juzo #juzosoft
#dysautonomia #chronicillness #disability#fashion #frockingup #fashionblogger#ootd #wiwt #everydaystyle #40plusstyle#disabledfashion #cripstyle#disabledfashion #wheelchairstyle#wheelchairfashion #wheelchair#ruraldisability #ruralstyle #ruralfashion#chronicstyle #chronicfashion#365dayswithdisability #Spring #Australia#gippsland #greenhair"

Via @michelle_roger.
5 of 12
Photo: Via @porch.cat.
"surprise ekg today because I've been so dizzy and passed out about a week ago.. everything seems okay, but they want me to wear a heart monitor for a few days #spoonie #hospitalglam#ehlersdanlosgrrrls"

Via @porch.cat.
7 of 12
Photo: Via @mutant_robot.
"Little #ivig infusion room #hospitalglam Thankful to those that #donateblood and #donateplasma Thankful for headphones & that I remembered them- fellow infusees are debating if you should put outgoing mail in your home mailbox & one of them used to be the infusion nurse in this room and she is telling the current infusion nurse how to do things ? #myastheniagravis#powerport #gammunexC [image: selfie shot of me in a medical recliner chair. The image is edited to be bright and washed out but my blue eyes, red lips and blue connector on my port are highlighted.]"

Via @mutant_robot.
8 of 12
Photo: Via @annieelainey.
"People around me don't really understand, but it's damn EUPHORIC for me at this point to be getting diagnosed, even if it's "bad news", new challenges and risks ahead for as long as I live, at least I know what's going on.
At least I'm finally getting a sense of validation; a privilege not every sick person gets, and my doctors are listening to me and using my case to LEARN, in order to better help future patients with the same disease, and it feels good to be a part of that.
It sounds corny as hell, but I'm grateful AF for every moment and honored to have a life filled with such diverse and intersecting experiences and the privilege of being able to communicate and share this narrative. Adventure is everywhere and adventure is inside of me, my life will never be boring, that's for sure.

Today, I updated my primary doctor with my EDS diagnosis, took my blood pressure sitting and it was low 86/52, within the same minute we took it again standing and it was 136/92. So doc is working on referrals for a new neurologist, a cardiologist, and a pulmonologist and testing for my secondary illnesses (I'll be searching for doctors on my own as well). This thing is in my genes, it's not going anywhere, so I just want to know what's going on. I want to get to know what's going on in my body and if there's anything I can do to treat it more kindly. #HospitalGlam [Photo: Annie with short lavender hair and glasses, wearing a black and white striped shirt, a red plaid open long sleeve, black wrist braces, black pants, and black orthopedic shoes, sitting on an examination bed]"

Via @annieelainey.
9 of 12
Photo: Via @devrivelazquez.
"ain't nothin to a survivor though... ✊?✨"

Via @devrivelazquez.
11 of 12
Photo: Via @rosalindr.
"#hospitalglam for that time I was a lab animal. (I made this fascinator) #ehlersdanlossyndrome"

Via @rosalindr.
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12 of 12
Photo: Via @stayweirdbekind.
"#hospitalglam like a beast because i'm killin' it today.
seeing a new primary care doctor - one who actually knows what ehlers-danlos syndrome is! today i had the most thorough physical exam I've ever gotten; a referral for an esophagram to determine the reason for my dysphagia (difficulty swallowing, i now weigh 95 pounds); a referral for vascular EDS testing; and a referral for prolotherapy. it is amazingly heartening to have a medical professional not doubt or question my diagnosis or symptoms!
#EDS #ehlersdanlossyndrome #VEDS#vascularehlersdanlos #ehlersdanlos#chronicillness #chronicpain#chronicallyfabulous"

Via @stayweirdbekind.