March 13, 2019 at 10:23AM by CWC
Instagram has a way of making you feel like you really know someone. Like, really know them. As a chronic illness advocate—I was diagnosed with a severe case of psoriasis at the age of 10 and with a pretty aggressive case of psoriatic arthritis at the age of 19 (a form of arthritis that includes flareups of red, scaly patches on the skin along with joint pain and inflammation)—social media is a way for me to connect with others who might be in the trenches of their own darkness.
I’ve been talking about the importance of self-care and self-love long before it was “cool.” I talked loud and often about my hard times of being stuck in bed and in severe pain, feeling like I was missing out on life. I talked about the endless search for a “cure.” I talked about the struggle of loving yourself when your body was rebelling against you, and trying to feel beautiful when your skin was red, flaking, and covered in scars.
But part of me still felt like some people didn’t quite believe I knew what it was like to be in chronic pain. It’s one thing to talk about it. It’s another to give an intimate glimpse, to show the physical proof of that pain. And there was one particular experience that I kept secret, completely hidden away. I was ashamed to show that part of myself. I kept waiting for the perfect moment to reveal it. I was waiting until I was in a committed relationship and some fictional partner, who already knew about it somehow. Or a hundred other reasons that seemed worthy and sensible. But then, just a few weeks ago, I decided to stop waiting and Just. Press. Post.
“I was so ashamed of what I looked like”
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**Trigger Warning** If you swipe left, you will see me when I was the absolute sickest I have ever been from psoriasis and psoriatic arthritis. I have literally been locking these images up so that no one will see them, for the past 17 years since they were taken. But over this past year I felt that it was time I finally let them out and let them go. For the first episode of my podcast (linked in my bio) I shared the images and some of the deepest and darkest stories of my life. My hope is that in sharing all of this, people will feel less alone. People will know that they can face their pain. And people will have some hope, that no matter how bad it gets, you are strong enough to get through it. To put it in perspective, I lived like this for about 7 YEARS of my life and another 10 years with it being about 20% as thick but still everywhere. Honestly loves, I feel a bit numb right now as I write this to you. I’ve spent almost two decades of my life holding on to these images, hoping no one ever sees them because I’m afraid of what they might think of me. But, here we are. This is the most vulnerable thing I have ever done, but all of you make it possible for me to be brave. I love you. Hope you listen to the podcast and that it supports you #thepointofpainpodcast #selflove #chronicselflove #mindfulness #mindfulness #chronicpain #psoriasis #spoonie
Throughout middle and high school, my entire body was covered in an excruciatingly painful rash from my psoriasis. Every slight movement was torturous. I was 19, in India with my family, when my uncle told me about a local acupuncturist who he thought could help. I had been diagnosed with psoriasis in elementary school, which started an endless string of meeting with various doctors, but nothing had helped. At this point, I’d been to an exhaustive list of doctors and healers. I was in pain, desperate and willing to try anything. I made my way to this mysterious acupuncturist, whose office was in a weird alley, definitely off the beaten path.
We started an aggressive treatment; in hindsight it was probably too aggressive. Twice a day, for six days a week, he pierced my body with 38 acupuncture needles and also hooked me up to an electronic machine that created an electric current. It was basically acupuncture on steroids. Just touching my skin hurt, so this was pretty painful. The acupuncturist also put me on an elimination diet (though that term hadn’t been coined yet). I nixed dairy, soy, and wheat for weeks. The end goal was to not only get rid of the rash, but also to give me the energy to actually live my life.
Looking back, it’s hard to say whether those treatments really worked—my psoriasis journey was only just beginning at this point. (My rash ultimately cleared up after a few weeks, but came back in full force after eating just one slice of pizza.) But decades later, those photos of me lying down on the acupuncture table still meant something to me. It showed me in the thick of one of the hardest moments of my life. I had been keeping this experience to myself ever since—largely in part because I looked so awful. I refused to show the pictures to anyone, because I was just so ashamed of what I looked like. How very visibly sick I was.
“I prayed the photos would mean something to someone”
That day in January, I decided that I had to share this moment with my followers. I was in Los Angeles visiting my cousin. I got up early and sat there in the dark while she was still sleeping, looking at the photos and reflecting. You know what I mostly felt? Sad. A wave of grief washed over me, remembering how hard those days were. I prayed sharing the photos would mean something to someone, even if it was a ray of light to one person, reminding her that she’s not alone.
I pressed post and just sat there. Suddenly, a panicked thought struck me. What if people comment saying these photos aren’t a big deal? That scared me because they were such a big deal to me—huge! Or what if no one commented at all?
Well, plenty of course did. Hundreds upon hundreds in fact. I basically spent the whole week in tears, and I still cry when I read them now. When someone with alopecia told me that my post inspired her to leave the house without wearing her wig, I straight up lost it.
My friends also reached out to me. “I never doubted you, but now I understand what you mean when you say you have to cancel on plans because you’re in pain,” one of my friends told me. Sharing with them my full truth has helped deepen our bond, and helped them further understand what I have been through.
Here’s the thing: This isn’t just about psoriasis. Almost everyone has been through a painful time, whether it’s physical or emotional. Maybe it’s a divorce. Maybe it’s loss of a loved one. But what I wanted the photos to show people was that you—yes you, who are currently in too much physical or emotional pain to get out of bed—can make it through this. And that there’s nothing to be ashamed of about how you’re looking or how you’re feeling.
To the girl I was when I was 19: Thank you. You were sick, and scared, and in pain, and I honor your experience and your struggle. I am grateful that you helped me find the way to being the person who I am today. I am no longer going to hide you from the world, because I am proud of your strength, not ashamed of your pain. I love you, and I thank you.
As told to Emily Laurence
Speaking of chronic pain, here’s why it’s so often mistreated in women. Plus, tips on how to cope when you’re in the thick of it.