My name is Katie, I’m 27, and I’ve had eczema since birth. I’ve had it in varying degrees throughout my life, and I have also dealt with alopecia areata. Skincare is my passion, and I dedicate my content to reminding people that they’re not alone. I know what it’s like to feel alone, and that’s really why I started posting. One day, I thought to myself, “Someone out there must be feeling the exact same way I do. But, I don’t know where they are, and they don’t know where I am. Maybe if I start posting online, we might be able to find each other.” It's ironic because I came online to help myself, and I ended up helping other people. I wanted to create community content that brought people together.
So first, I started a private account about my alopecia experience. It was completely private, and I hid it from my main account. I started it because I wanted to talk about my experiences and educate people. But, I was too anxious to do it in person. Plus, I couldn’t say, “I’ve got alopecia” without crying. So, I decided to start typing instead.
I got alopecia in February 2017, and I started posting anonymously that September. I was able to find different communities too. All the while, on my main account, I was editing my eczema, hiding my alopecia, and pretending like I was happy and fine. When in reality, I was a nervous, anxious wreck, and suppressing it was only making my headspace worse.
So eventually, I figured, “Why am I hiding my reality? I’m making things harder for myself.”
And one day in 2021, I just came out and told everyone on my main account, “I have eczema.” I got so many messages from people saying, “Oh, my gosh. I didn’t know you had eczema. I have it too!” No one knew because I was very good at hiding it. I can even remember how I hid my palms by turning them inward as I talked. I began to reflect on how much time I had spent concealing myself. And it came to a point where I just decided to be brutally honest and also share that I had alopecia on my main account.
Katie shares with us her first experiences with alopecia.
When I was first going through hair loss, I already had eczema. Reconciling the two diagnoses was difficult for me, and I was truly struggling to like myself. I was having near-daily panic attacks. I remember how I discovered my hair loss. It was not gradual. It was a very sudden and traumatic experience.
I was home from uni (university), having lunch with my mom and boyfriend. Suddenly, I felt a breeze. The breeze went through my hair in a very unusual fashion. I raised my hand to touch the spot where I felt the breeze. Well, there was no hair. All I felt was my scalp.
I felt a massive patch of bald scalp.
Not fully believing what I felt, I turned to my boyfriend and said, “My head feels really weird. Is there something there? What is that? Is there a bald patch?”
And, indeed it was. I had a huge 7 by 8 centimeter bald patch. My whole body just started shaking. My mom tries to calm me down, and she says, “Oh, darling. You’ve got alopecia…”
In the middle of a fully packed restaurant, I stood up abruptly and walked briskly to the bathroom. It was then that I had my first panic attack. I was in the bathroom all alone, and I just started crying. My mom came in after me, and she gave me a big hug. I didn’t even know what alopecia was. I went from being totally unaware of the condition to having a bald patch. It was such a shock, and that’s when the anxiety started. And gradually, it built. On top of having eczema all over my body, I began to wonder if I was going to lose all of my hair.
“What have I got going for me?” I thought to myself. “I’m going bald, and my skin is flaking off." From there, I began to dislike what I saw in the mirror. I started having really bad insomnia, and I can remember staying up all night. I would stand in the mirror all night just to make sure it wasn’t getting any worse.
I was in a very negative headspace. Sometimes, I didn’t even want compliments because it felt like I was being told something that wasn’t true. That’s when therapy really helped. If it gets to the point where all you think about is your skin, it’s consuming you, and you don’t even want to go out because of it, that’s your body calling out for help. Again, that’s where therapy or mental health charities come in.
For instance, when it got to the point where I was not doing well at uni, I opened up to a lecturer, and it turned out that she also had alopecia! She was the first person I spoke to who truly understood it. She truly listened, and she marched me off to the University counseling department. She got me counseling, and I was able to receive cognitive behavioral therapy. In time, I began to find my power again, and I was able to process everything. During therapy, the memories and experiences I needed to work through began rushing back to me.
Katie describes her earliest memories with eczema.
One of the earliest memories I have about eczema was the absolutely excruciating pain of bathing. I remember always having creams at school. I’d always have them at the nurse’s office. I would go twice a day, and my peers would ask me, “Why are you always in the nurse’s office?”
I remember how in PE we had to wear shorts. But, I had eczema all down my legs. I had very bad eczema on the back of my legs. Everyone would say to me, “What’s happened to you? What’s wrong with your legs?” It was very noticeable because the sweat during PE made my skin flare up with red rashes. My skin would remain red for a few hours afterward too. I can remember how putting on makeup caused even more dry patches to show up. I thought back to doing water sports and getting dry, patchy hands too.
I started feeling like I couldn’t do things because of the pain in my hands, and I got very down about it. I felt like “the hand eczema girl.” I had dyshidrotic eczema which is when you get painful, weeping bumps all over your hands. Then, when they burst, they leave behind slits. I also had flares all up and down my legs, my stomach, my bum, and in other places. I had it on the base of my spine, and it wouldn’t heal. I wore clothes to cover this, and the chafing was very painful. But, I didn’t want anyone to see my skin. Meanwhile, my friends always said I was lucky because I didn’t have acne. But in reality, those words made me feel very alone. It made me like no one understood me.
Even when I visited the doctor, it never felt like they were listening. I just felt like they would give me creams and send me on my way. I felt alone, and that’s why I think it’s so important to talk to people.
After I unpacked all of these experiences, I realized that I’m constantly evolving and learning about my body. Accepting this is still challenging though. Because just when you think you’ve learned your body, it suddenly changes again. For example, for the last six months, I’ve been having very bad facial flares even though it was previously under control. But, this time around, having an eczema flare-up does not make me feel negatively about myself.
I used to feel like I had to hide. I used to feel like I wasn’t beautiful or that I needed to change something about me. I thought I needed to measure up to disparaging beauty standards. But, I’ve realized that if something or someone is making you feel less than, it’s okay to unfollow or unsubscribe. I unfollow people who try to sell a “before and after” because the concept itself is exclusive. “Before and afters” don’t really exist when you have a long-term condition like eczema.
Moreover, beauty is not defined by how much you can change yourself. Beauty isn’t one box or image – it’s a feeling. Beauty is looking yourself in the eyes and knowing you’re going to be okay – even if you don’t look the same every day.