My name is Zainab. I started my YouTube channel in 2016. It used to be about hair, but as time went on, I ventured into beauty. After I made a video on eczema, people started messaging me things like - “I have eczema as well. How am I going to get into a relationship? How is this going to affect my job?” I found that a lot of people were really depressed and alone about their eczema.
Growing up, I also felt really alone with my eczema. In school, I felt very isolated. It just seemed like no one wanted to talk about it or see it. I felt like I had to hide, and after creating my YouTube account, I saw that many people had been through the same thing. This encouraged me to create a safe space for discussing eczema on Instagram. In 2017, I started documenting pictures of my skincare journey because I had stopped using topical steroids, and my skin was going through withdrawal. Up until that point, I had been using topical steroids on my skin for over 20 years which is a very long time. Steroids are not supposed to be a long-term treatment, and my skin was not doing well so I just decided to stop cold turkey.
The steroid withdrawal started off with redness and little patches on my face that would never heal. I thought I could handle it, but it just got worse. My skin started turning purple and red. And if I brushed my forehead, my skin would come off.
I used to dread getting ready in the morning. My manager let me take an hour to come in, but there was nothing I could do to conceal my TSW. I couldn’t wear makeup because it made matters feel and look worse. I used that hour to get myself exfoliated and creamed up. I was very grateful to my manager for the extra hour, but I was still absolutely exhausted. Throughout the night, I was not sleeping at all. One of the symptoms of TSW is insominia. For one, your skin is very uncomfortable. I can’t describe how it feels. It’s like you’re constantly burning. When you’re laying there at night and everything is quiet and there are no distractions, you notice it more. On top of that, your skin has a weird feel to it. It’s damp and oozing. Plus, you’re sweating all the time. You sweat buckets. Then, the sweat irritates the open wounds where you’ve scratched. Also, I was constantly cold but always sweating. That’s really horrible to sleep in.
At the time, I was working at a college. I remember going on a trip where I was a science tech, and one day, we went to a conference after lunch. I was sitting down, and I just fell asleep. I fully konked out on the chair, and I would wake up when a speaker finished and people clapped. I tried to stay awake, but there was nothing that I could do to stop from falling asleep between 10 am and 3 pm. I couldn’t help it because, as I mentioned before, I was so uncomfortable at night.
There were many times when I would just sit in my room, and I’d be so in pain that I was calm. I told myself - “If you turn back, you’ll end up in this situation again.” Every day I woke up, my face was purple and red. My eyes were swollen, but somehow I just took it day by day. When I would wake up, and my eyes weren’t swollen or there would be a patch of skin that wasn’t red, I’d take that as a good sign.
The presence of constant peeling, redness, oozing, swelling, burning, and itchiness was my reality for 6 months. But after six months, I went through a break where my skin didn’t hurt upon waking up. By May 1st 2018, I was still blotchy, but my skin wasn’t in constant pain. From there, it got better. By June or July, the rash on my neck had disappeared, and my skin was smooth. Eventually, my original skin color even came back and I didn’t think about my skin.
But then, I had a flare-up when I had my baby in May 2021. It came back full force. I honestly think it was because I was given a steroid shot while I was pregnant. They suggested it in case she was born prematurely. So for the sake of my baby, I got the steroid shot.
I got the steroid shot in March 2021 when I was 29 weeks pregnant, and the week following of those shots, my skin was suspiciously clear. The following week after that, my skin started burning, and it started flaking. I was like - “Okay, this is the worst of it.”
Two weeks after that, I had a rash on my arm, and it just started spreading up to my wrist, to my torso, and then all the way down to my ankles. I’m brown, but my skin had turned a fiery, bright red, and once again, it was extremely itchy. Once the redness died down, I was left with really dry, flaky, and swollen skin. It was happening all over again, and it didn’t matter if I creamed it. Cream did nothing.
I carried my daughter full-term to 40 weeks. She was born healthy, but within the folds of my arms, I had TSW very badly. Picking her up gave me excruciating pain. I didn’t know what to do. I thought back to the steroid shots, and how I was virtually forced to take them. They gave me the shots in case she was born early, but she wasn’t, and I felt like I was going through everything for no reason.
I’ve only started feeling better now, but that was the worse my TSW had ever been. I didn’t want the steroid shots, and I wanted them to keep me overnight to see if there was anything wrong before they gave me the shot. They did the opposite. They gave me the shot, and then kept me overnight. If the doctors would have listened, this would not have been an issue. Eczema patients aren't being heard, and this is very unfair. A lot of people go to the doctor with TSW and ask for help or advice rather than steroids. TSW sufferers are not being listened to, and they’re just given more steroids. If you refuse steroids, it seems like you’re put into the category of patients who doesn’t want help. I haven’t been to my doctor in 4 years for my skin because I’ve lost trust. It is difficult, and eczema patients often find support within each other.
It’s helpful to talk to someone who goes through TSW and to discuss it with someone who understands the reality of it. In terms of support, people with TSW need understanding. The condition makes you miserable. I’ve been irritable, but I know that’s not me as a person. So much of my life has been bottling up my feelings, pretending that I don’t have eczema, pretending that I’m not itchy, and pretending to be so happy when I know that’s not the case.
There comes a point where people can’t hide their emotions anymore so please don’t take it personally. They’re just upset. In the case of eczema, the cards we’ve been dealt are not nice, and a lot of times we’re on our own when it comes to finding what works and what doesn’t.
For example, the only way that I’m comfortable is by doing the opposite of what everyone says. I don’t moisturize. I have not put cream on my body since the 14th of August. It made it look so much worse and bright red. Once I stopped creaming it, the skin did not itch or ooze. It was just a lot more comfortable, and it’s started getting better. I also can’t use lotions because when you’ve got TSW, water feels like acid on your body. Showering can really hurt as well. Showers can cause a lot of itching and lead to like a week of healing. Once you stop showering for a while, your skin produces its own oils.
You have to just wash up sometimes. Hot baths help. It stems the itch for me, and it feels cleansing. So far, I’ve seen progress. I went through hell, but I came out stronger and knowing that I made the right choice.