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Chronic Illness Essays

I Tried To Quit My Job Because Of Psoriasis, But Thankfully, They Wouldn’t Let Me

Through their support during my worst psoriasis flare-up, I got a glimpse of the way more people should be supported during their health crises.

This post is part of a collaboration with Inspire, a healthcare social network with more than one million patients and caregivers.


Ever since my sophomore year at university, I wanted to become a church minister. Up to that point I didn’t have a clue what I wanted to do when I “grew up.” But that summer, through a mission project in San Francisco, I discovered my passion for spirituality and helping others. After that, motivated by a new sense of purpose, I worked diligently to complete my undergraduate degree with an eye to apply to graduate seminary education. And I wasn’t going to let anything get in the way of reaching my goal… especially my stubborn, severe case of psoriasis.

The dermatologists at the University of California, San Francisco (UCSF) first diagnosed me with psoriasis at nine years old. The disease inflames the skin by overproducing skin cells, leading to raised, red, itchy plaques that often flakes off in silvery white scales. Psoriasis is the most commonly diagnosed autoimmune condition, with about eight million people living with it in the United States alone, but despite this, it is rarely talked about, especially publicly.

My case of psoriasis is considered severe because it covers over ten percent of my body surface area. Even though I tried to hide it, I was always self-conscious about it. I could feel people staring at the visible patches on my hands, scalp, ears, legs, and arms, and imagined what they were thinking: is he contagious? Can I catch it?

I did everything I could to hide my condition, even wearing long pants and sleeves in the summer. You wouldn’t catch me dead at a public pool. Even so, I took an overcomer’s attitude in life believing I could do anything I set my mind to.

The Worst Psoriasis Flare-Up

Despite my ongoing battle with psoriasis, I completed seminary and successfully interviewed for my first church position as an associate pastor in the San Francisco Bay Area. Things went well, and I felt my life was on track, but five years later, my psoriasis spiraled out of control, and I found myself virtually covered from head-to-toe with unsightly flare-ups.

I tried in vain to find any semblance of relief. I couldn’t sit still, or focus on my computer, for more than a few minutes, due to the discomfort and inflexibility of the inflamed skin. I felt self-conscious when meeting parishioners, who couldn’t help but notice the plaques covering my skin when we shook hands. At nights, I battled insomnia from the intense itchiness; during the days, when I was trying to fulfill my office hours, I was lethargic and listless.

Psoriasis had turned every moment into agony. How could I continue to wait and work through the next two months?

At that point, my dermatologist told me he no longer felt he could handle my case alone. He referred me to a preeminent psoriasis specialist back at the UCSF Psoriasis Treatment Center for a second opinion. The nearest appointment was two months away, but my psoriasis had turned every moment into agony. How could I continue to wait and work through the next two months?

An Asian man wearing glasses dressed in a purple polo shirt.

Howard Chang.

Should I Quit My Job?

I remember the exact moment that psoriasis flare broke me down emotionally. I was sitting at my desk in the living room, trying to work on my laptop after dinner, when I suddenly brought my hands up to my face and began to sob.For the better part of an hour, I cried, until my wastebasket overflowed with used tissues. Concerned, my three young children took turns trying to comfort me, with a hug or a glass of water. I felt sorry they had to see their father in such a sad state, but I just couldn’t take it anymore.

Later that evening, I decided to resign my post at the church. I felt hopelessly inadequate to perform any of the duties expected of me at an acceptable level. Worse, I thought that if I continued on my current course, I might have to undergo the humiliation of being fired. I knew my hire split the leadership, with one deacon leaving the church a few months after I started, and I had since been grilled about dropping attendance numbers in the church group I oversaw. And that was before I had head-to-toe psoriasis. Why would they possibly keep me on now?

The next day I drafted my letter of resignation and made an appointment with my supervising pastor to let him know my decision.

I had head-to-toe psoriasis. Why would they possibly keep me on now?

Finding Support For Psoriasis

But my resignation did not go as planned.

As I walked into the meeting with my pastor, I imagined how it would go. I would explain to him all the ways in which keeping me on staff weakened the team. The pastor would then tell me how sorry he was I felt that way, but of course, he understood my decision, and even agreed with it. It would be best for everyone if I moved on.

But that’s not how it went. To my great surprise, the church’s leadership wouldn’t accept my resignation. The pastor wouldn’t even take it from my hand. Instead, he showed compassion. He asked me how my psoriasis was affecting my work, and how he and the staff could support me so I could make it through this difficult time.

My church’s support wasn’t just empty words. It turned out one of my colleagues had a family relation to the dermatologist I needed to see at UCSF. She got my appointment moved up with him to the following week.

To my great surprise, the church’s leadership wouldn’t accept my resignation

Moreover, I was immediately granted a three-week leave of absence, to rest, recover, and get away from the stress that contributed to my psoriasis flare-up. I decided to take a seventeen-day cruise through the Panama Canal with my parents and ten-year-old daughter, which in addition to the relaxation it would offer would allow me to sunbathe: an ancient remedy for many skin conditions.

During that cruise my immune system finally started calming down with some help from a new treatment prescribed by the UCSF dermatologist. The sunlight not only helped to improve my mood and skin, I also saw it as a symbol of a new way of seeing my psoriasis and work.

The Unintended Benefits Of Psoriasis

For decades, I saw psoriasis as an enemy to overcome. I hid it as much as possible from others, not wanting their sympathy or pity. Wanting to be ‘normal’, I pretended I didn’t have psoriasis. If someone had asked me what benefit I received from having psoriasis I would say absolutely none. But after I returned from the cruise, I found myself better able to accept my psoriasis. Sure, I’d rather not have it, but like most of the hardships we are burdened with in our life, there were ways in which it was a blessing in disguise.

For one thing, psoriasis allowed me to truly see how strong the support of my community was. During my most recent attacks, I had feared they would resent me for not being able to do more for them. I saw my role to help others, not to be helped: I officiated their weddings, visited them in the hospital, and oversaw the burial of their loved ones, but I didn’t think they had any obligations to me. But that’s not the way they saw it. My church–leadership and parishioners both–believed it was time to give back, with one colleague even going so far as to offer me a free flight to Toronto to see a well-known Chinese herbalist who specialized in skin conditions. I grew closer to those in my church community as a result of the shared experience.

My openness in sharing my struggles with psoriasis ended up giving a voice to others in the community who lived with hidden chronic diseases.

My condition also brought greater awareness to those living with chronic health conditions. I began to regularly share about the ups and downs of my experience with psoriasis when speaking on Sunday mornings or writing newsletters to the congregation. In the church where I worked, health conditions were often kept secret to avoid the questions, embarrassment, and unwanted attention that they might bring. My openness in sharing my struggles with psoriasis ended up giving a voice to others in the community who lived with hidden chronic diseases. It even turned out that a few church members had their own skin diseases, which they had never told anyone about.

Through my church’s support during my psoriasis nightmare, I became a better person and a better pastor.

Finally, through my church’s support during my psoriasis nightmare, I became a better person and a better pastor. A lot of times when someone comes to you with a problem, you want to fix it for them, but that’s not usually what they’re after: tangible help is nice, yes, but what they really want is is your understanding and empathy. By following the example my church community set, I was able to better show compassion for my fellow parishioners, supporting instead of trying to fix, and listening instead of minimizing the feelings of others.

In my worst psoriasis flare-up, the people closest to me showed me support and kindness I didn’t feel I deserved—especially in not letting me quit my job. Through them, I learned that my success depends not only on me, but also on my community.

I wouldn’t have it any other way.

Chronic Illness Diabetes Instagram Roundups

8 Inspiring #ChronicallyIll Women To Follow On Instagram

By documenting their lives with a health condition, these incredible women are not only fighting stigma and raising awareness, they're helping build communities.

From moms toting perfectly (and expensively) dressed toddlers to travel influencers posting bikini selfies at 5-star tropical resorts, Instagram has no shortage of people showing off curated, unrealistically perfect lives. But there are also amazing activists on social media trying to do something radically different: show the world, in raw, vulnerable detail, what life is like with a chronic illness. These people represent a new wave of anti-ableist sentiment on the Internet, working to raise awareness and fight for other chronically ill people, while also showing that life with a health condition is like any other: a mixture of the good and bad, the beautiful and the ugly, and the painful and the pleasurable. If you want to follow Instagram influencers who help you celebrate life, with or without chronic illness, here are 8 amazing women you should follow.

Chronic Zebra

ChronicZebra

A graduate student in dance therapy, a field usually dominated by able-bodied folks. Instagram user ChronicZebra documents her journey with several chronic illnesses, including Enlers-Danlos Syndrome, Mast Cell Disease, and Dysautonomia, among others. ChronicZebra serves as an example that people with all sorts of conditions can get outside and do what they love, and that they can use resources to help them (like canes, wheelchairs, etc). Follow Mairead for a blend of health tips, real-life experiences, and a healthy dose of feminism and activism, plus some beautiful nature pics.

Just A Little Suga

Ariel Lawrence, aka JustALittle_SUga

Ariel Lawrence, who goes by JustALittle_Suga on Instagram, lives with diabetes and fights hard for representation of people of color in the chronic illness community. “I’ve lived with Type 1 Diabetes for 12 years,” she says.” I’m also a native New Yorker who is passionate about addressing educational inequality, finding a good street festival and West African dance.” Advocating for “diabetics on the margin,” like herself, Ariel’s Instagram is an empowered space which aims to live the change Ariel would like to see.

You Look Okay To Me

Jameisha Prescod, aka YouLookOkayToMe

Jameisha Prescod, or Jam, is a documentary filmmaker in London, who also lives with lupus and other conditions.  She started her account in 2014, and today, it is one of Instagram’s best spaces to connect with other people dealing with chronic illness. She says: “ Not only has the platform started to raise awareness for chronic illness, it’s become a community for chronic illness patients to uplift  and support one another which I think is equally as important as raising awareness.” Find her at YouLookOkayToMe on Instagram.

Leah Javon

Leah Javon

Taleah Javon, who goes by Leah, is a 23-year-old with the chronic illness works, including lupus, Sickle Cell, Crohn’s disease, fibromyalgia, and asthma. Although Taleah has been sick for seven years, a thread of powerful optimism and willpower extends throughout her account. She is graduating with her BS in Psychology this year and wants to be an advocate for sexual assault victims. Follow Taleah for honest posts about her struggles, and a living example of body positivity: she refreshingly embraces the beauty of herself and others, without reinforcing beauty myths or perpetuating shame. Find Leah Javon on Twitter @LeahJavon, and on Instagram.

Abby James

Abby James, founder of TheTiredGirlSociety

Abby James is a wife and mother from Perth, Australia, living with multiple chronic diseases, but she writes especially about Chronic Fatigue Syndrome (CFS), and how she balances the needs of her illness against her needs as a woman, mother, and writer. On her personal Instagram account, she posts beautiful pictures with an ethereal, vintage look, but it’s her founding of the Tired Girl Society that put her on this list. A platform for women with chronic illnesses to connect to one another, the Tired Girl Society gives spoonies a way to connect to one another, and find strength in solidarity. “I truly believe there is life to be lived and celebrated alongside the limitations that chronic illness causes,” she writes. “The Tired Girl Society society is a way to offer that as a safe, vibrant online space.

First Prioritea

Tatiana, aka First Proritea

Tatiana’s various autoimmune diseases, which include psoriasis and digestive problems, caused her to turn to a mostly fruitarian diet for relief. Under her First Prioritea Instagram account, she shares great juicing recipes, as well as tips on what fruits and vegetables to add to your diet to manage flare-ups. Her tips may not work for everyone, but if nothing else, you can see some darn beautiful fruit on her feed.

Fight2Breathe

Cayleigh Haber, aka Fight2Breath

Fight2Breathe is the Instagram account of Caleigh Haber, a two-time lung transplant survivor, who now advocates for others with breathing issues and cystic fibrosis. Through her Instagram account, she shares her recovery story, and aims to raise awareness of CF. It’s the perfect account to look at when you are feeling down about the impact chronic illness can have on your health, because Caleigh is an example of how to face those challenges with bravery and grace.

Prettiest_Unicorn

Elizabeth Kestrel, aka Prettiest_Unicorn

Elizabeth Kestrel, who has cystic fibrosis, fills her Prettiest_Unicorn Instagram account with a fun mix of cosplay and chronic illness awareness, with a few cat pics thrown in for good measure.  She talks about her disease while also discussing the other things that make her life worth enjoying. Her disease doesn’t define her, but it is an important part of who she is, and she communicates that with sincerity, vulnerability, and a wide stream of humor and fun.

 

 

There are many ways to be a chronically ill person, and no wrong way to engage with your own disease. Each of these influencers has taken different routes to share their story and connect with others; hopefully among them you’ll find an account you really enjoy. Social media can be a powerful tool for change, and each of these people has decided to use it to help them make a difference. There’s nothing more incredible than that.

Chronic Illness Q&As

Beauty Beyond Psoriasis

As a beauty blogger, Christina Patrice has made her condition visible to the whole world.

Los Angeles-based blogger Christina Patrice has been fascinated by all things hair since she was in middle school. Throughout adolescence she would visit the beauty shop with an observant eye, asking questions and scrutinizing the many tools and methods available for styling and managing hair. “I feel like I missed my calling to go to cosmetology school,” she says.

Patrice’s interests led to years of personal experimentation with hair tools, colors, and textures, eventually leaving her as an adult with damaged, thinning hair that had started “falling out in gobs.” “I was flat-ironing my hair, 450 degrees, like clockwork every week,” she says. “I would be in the shower going, What the heck is going on? Why is my hair falling out? I laugh at it now. You can’t melt your hair and expect it to stay on your head.”

You can’t melt your hair and expect it to stay on your head.

A self-professed product junkie and recovering flat-iron addict, Patrice, now 31, began her blog The Mane Objective four years ago to document the adventures and occasional misadventures along her journey to healthy hair. An extensive resource of practical tips, product reviews, photos, and videos for women transitioning to and caring for natural hair, Patrice’s blog has since reached nearly three million pageviews. She is also a contributing writer to Black Girl with Long Hair and NaturallyCurly.com.

christina-patrice-headshot-1

For more than 15 years, Patrice has also been dealing with the recurring skin condition psoriasis.

For more than 15 years, Patrice has also been dealing with the recurring skin condition psoriasis. An autoimmune disease, psoriasis is a rapid overproduction of skin cells that manifests as itchy, stinging rashes and scaly patches that can appear anywhere on a person’s body, most often the scalp. Psoriasis has no cure and is especially difficult to combat because of its unpredictable nature, its laundry list of triggers, and its tendency to resist treatments that previously had been effective.

Physically, psoriasis can lead to permanent scarring, hair loss, and infection. But the condition can also take an emotional toll, a reality Patrice learned firsthand when the disease first manifested across the length of her body in her sophomore year of high school. Given her experiences, Patrice could easily have chosen to hide her condition from her blog audience – which she did initially. But over time she chose to open up about the condition and make it a part of her blogging focus. Here, Patrice discusses with Folks the realities of living with psoriasis, how it has shaped her self and her writing, and why she ultimately chose to focus the public spotlight, rather than the Photoshop brush, on her condition.

There’s no such thing as a good time to experience psoriasis, but you first experienced it at one of the worst times in a person’s life, so let’s begin there.

Oh my god. [laughs] Yes, in high school. It was so bad. You’re trying to fit in with the cool kids and trying to be cute and get the boy you like to like you back. Everyone and everything’s so shallow. Plus, my parents were really adamant about academic success. So the stress of trying to be a high-school kid that’s not an outcast, plus maintain a 3.8 to 4.0 GPA average. It was a lot.

I think it was the second week of my sophomore year of high school, and it seemed like it came out of nowhere. I was freaking out. My parents were freaking out. No one in my family had ever seen or dealt with anything like psoriasis.

christina-patrice-bun

There’s no such thing as a good time to experience psoriasis.

The first thing [the doctors] did was give me steroid creams. I was supposed to alternate and not use one on my face because it was too strong, but I did it anyway. Because even if I had to wear long sleeves and long pants for the rest of my life, I didn’t want it on my face. I can’t cover my face.

My mom would drive me two or three times a week to get UV therapy treatments, and the first couple of weeks, I sunburned the hell out of myself. My thought as a high-schooler was, as soon as I can fix my skin, I’ll be normal again. I had no concept of standing too closely to the UV light or cranking it up to the max time. And sure enough, I was sunburned from head to toe. There were some days where all I could do after school was lay on my bed because if I moved, it hurt.

Psoriasis of that magnitude is not very common, and to this day we still don’t know what the trigger or the onset point was. But I live in Los Angeles. It’s fairly sunny year round. So imagine 90-degree weather, and I’m going to school in pants and a hoodie, with a headband on and the hood on, covering myself as much as I could because it was such an embarrassing thing for me. Thankfully I had a good support system of friends who didn’t care what I looked like. But it was an incredibly difficult time to navigate between social and peer pressure and this condition.

How did it manifest? Did you wake up one day, and you’re covered in head-to-toe psoriasis?

It seemed like it. If I look back on it a little more critically, in the days and weeks leading up to it, I would see a little small rash here, a little small rash there. But I thought it was maybe an allergic reaction to laundry detergent or something. Nothing drastic or uncommon. But it seemed like one day I woke up, and it was probably from my mid-calf or my ankle, all the way up. My legs, my stomach, my back, my arms, my butt, my face — literally everywhere. The onset was pretty severe. Honestly it hasn’t been that bad since. High school — that first initial period — that was the worst it has ever been.

You’ve written that because of the psoriasis you don’t have a lot of photos from that year in high school. How come?

I don’t, because I was just so embarrassed. It was an insecurity thing. At the time I was like, I don’t want to be seen like this. Even as an adult, it’s still taken some time to be comfortable in my skin, so to speak.

I find with my own skin conditions, even though we’re not talking about something lethal or generally disabling, it completely changes your outlook and your sense of self.

Yes, and there’s this stigma around it. Because people don’t understand. Whenever they see something like a visible ailment on your body, they assume that it’s contagious.

I’m now at a point as an adult that it doesn’t really faze or bother me, but it does still get me sometimes when it’s super visible. I’ve worked to do what I can to mitigate and minimize the visible impact of psoriasis on myself, but at the same time, I’m comfortable knowing this is something that’s going to be with me for the rest of my life.

Whenever [people] see something like a visible ailment on your body, they assume that it’s contagious.

Have you encountered situations in which you’ve faced a stigma as a result of your psoriasis?

Absolutely. High school was definitely a touchy situation. There’s always that one — I want to say jackass — There’s always one. It can range, anything from Euuw, what’s that? to, Don’t touch me, I don’t want what you have. There’s always the looky-loos, the people that are going to look and turn their nose up at you. Whatever. I very much have this mindset now that if you don’t pay my bills, I don’t care about your opinion. [laughs] So it doesn’t faze me so much as an adult.

There have also been times, especially with smaller children. Smaller children don’t really have a sense of what to say and what not to say. For about a year and a half, almost two years, I worked in a special needs school, and I had to find different ways to explain it without getting sensitive or offended. That taught me some lessons there.

Whenever I sit down to get a haircut, I’m always finding that the first thing out of my mouth is almost an apology to the hair stylist.

Yeah, that’s part of the reason why I honestly curtailed going to get my hair done professionally. Now I wear my hair in its curly state, so I have a particular stylist that I go to. It’s an hour and a half drive out into Wine Country, but she knows my hair, she knows my condition, she knows what’s up. But I’ve had some stylists… It was really embarrassing when a stylist actually went to get gloves to touch my scalp. I was like, This is not contagious. I promise it’s not going to jump from behind my ear onto your pinky finger. That was my last time going to that particular stylist.

A before and after view of Christine's hairline.

A before and after view of Christine’s hairline.

Much like you, I do find when I sit in the chair, especially if it was a new stylist, I’d literally have an elevator pitch for my scalp, this whole rundown of things I’ve got to say to them.

What would you say has been the biggest challenge of living with psoriasis?

The temperamental nature of it. You can go to bed with everything okay and wake up with a patch on your cheek. You have no idea when it’s coming. You can do everything from homeopathic to prescription medicines, and you still never know what’s going to happen. And there’s so many different triggers internally and externally that can cause an outbreak that it’s almost impossible to predict. I used to be able to say it gets better in the summer and worse in the winter. Then last year it was terrible in the summer and in the winter.

And then there’s the stress trigger, which happens at the worst possible time, which creates more stress.

That is the worst. I’ve done posts on my blog about managing psoriasis, and that’s always my number one tip. And it’s the crappiest tip. [laughs] Because let’s face it, there’s really no solid stress management technique. If that was the case, people would be a lot happier than they are. And all of the things that we can think of to do for stress management are temporary. They’re fleeting. For example, if meditation is part of your stress management techniques, and you meditate for half an hour every morning. You are good until 11 o’clock, and then somebody says the wrong thing to you, and you snap, and it’s all over.

What motivated you to write about your psoriasis publicly? Were you originally hesitant to do so?

I was. I was sitting kinda firmly in a niche as a healthy hair/curly hair blogger. I’m really active on Instagram and Facebook, and now Snapchat. But social media is the breeding ground for unsolicited opinions and advice. I would post pictures, and there were a couple of different types of responses. Some of them I didn’t mind and would genuinely ask what it was. But the other type I would get was, “You know, if you just drink water and take an alkaline vegan diet and balance your chakras…” People would say the most random stuff, and it would frustrate me. So I was like, You know what? Let me go ahead and address it.

My blogging has always been rooted in honesty, transparency, and helping. So when the psoriasis stuff started coming up, it was almost a no-brainer.

My blogging has always been rooted in honesty, transparency, and helping. So when the psoriasis stuff started coming up, it was almost a no-brainer. Because if I can open up and be transparent about this, it can potentially help somebody and help mitigate them feeling what I felt, which is that embarrassed, apologetic, having-to-explain-myself kind of feeling. So I peeled the layers all the way back, and went from everything, from how to manage it on your scalp to total wellness and managing it from a more holistic perspective, how it’s impacted me, and sharing my story.

I didn’t see a lot of bloggers at the time talking about specific conditions that they have, especially on social media. Social media is always painted as people’s highlight reels. Their biggest triumphs, their successes, their most fabulous angles, their best everything. But sometimes you have to get real and say, Hey, I’m not perfect. I have issues. And this is one that I’ve been grappling with for half my life.

It also forced me to be more upfront and more honest, especially with highly visual platforms like Instagram. At some points I would Photoshop the psoriasis out of the picture to make myself feel better. It was a really interesting time. I can actually go back and find those photos, and I’m like, That’s a terrible Photoshop job. But nonetheless, it made me feel better. Now I don’t. I color correct, which means if my hair is black, my hair shows up as black. If my hair’s red, I want it to be the same red like in real life. But I don’t retouch, and I’m not doctoring it to remove the psoriasis. Because at this point, why hide?

Christine is extremely upfront on social media about her psoriasis.

Christine is extremely upfront on social media about her psoriasis.

I was going to ask what ultimately in writing about hair and personal beauty topics do you hope to accomplish, but it sounds like it’s less aesthetics-oriented and more about educating people and helping them solve problems.

That’s always going to be my intention. I’m not one of your typical brand influencers, if you will. A lot of people will go out in the middle of the street, take gorgeous photos, and people throw money at them. That’s never really been my personality. In my day-to-day life, in whatever phase in my life that I’ve been in, something has always kept me connected to helping people. My blog has been my resource to do that. There’s enough noise out here already. You’re being marketed to at every turn. It’s not to say that I don’t take sponsored content opportunities because I do. I can’t pay my car note with conditioner. But I still have to maintain that balance. At the end of the day, I have to offer something of value that’s going to help someone.

I’m not one of your typical brand influencers, if you will.

How have your experiences with psoriasis influenced your approach to hair and beauty topics?

I would say it has made me cognizant and more aware. Because I have psoriasis, I’m very aware of the things and ingredients that I try to avoid, like the super-drying sulfates or artificial fragrances. There are some brands I have to turn down because there’s no way that I can paint their company in a positive light knowing the things that I know. I can’t have the ingredient list be water, fragrance, sulfate, and then be like, This product is amazing! I’ve written 52 articles speaking against that exact thing. So interestingly enough, it kind of forces a checks-and-balances integrity kind of thing.

It also focuses me away from trying to compete on the same level as far as aesthetics as everyone else. The blogosphere is very competitive, and people are always trying to pick the most artistically inspired photo or have the perfect selfie. But that’s not my walk. I’ve never been that kind of person. I get to focus more on the substance, if you will, which has worked for me in the past four years that I’ve been blogging. That, if anything, informs it. I used to try to Photoshop my pictures to take out the psoriasis, and now I’ve arrived at a point where it’s a part of who I am. And people see me as a resource for that particular information.

This interview has been edited for length and clarity.