Beyond her skin symptoms, Henderson said psoriatic disease has significantly impacted her mental health. While her friends were accepting and her family supportive – her mother and grandfather also have psoriasis – she recalls the feeling of wanting to hide herself. She was always aware of people staring. And, occasionally, adults would point out her disease and ask if she was contagious.
“I went to this waterpark with my mom and a couple of friends when I was maybe 10 years old. I never will forget. I was at the concession stand and this man came up to me and asked, ‘What is that? Is that contagious?’ It was already hard enough to put on a bathing suit and go out in public, and that just made me want to leave right away,” she said.
Henderson said the body surface area impacted by psoriasis worsened quickly for her. Eventually, the only part of her that was not covered in psoriasis lesions was her face. Rather than flaring and then improving, her psoriasis was constant, with no periods of relief or improvement.
Within the first couple of years of her diagnosis, she participated in clinical trials for one of the early biologics available for those with psoriatic disease. While the studies were double blinded, she believes she was on the biologic in the beginning because, she said, it was the first time her skin had begun to improve.
“I was completely clear for months, and then, I think that they started giving me the placebo because it started coming back. We'll never know for sure but that was the first time my skin was really clear,” she said.
In sixth grade, Henderson and her mother took a month-long trip to a medical resort at the Dead Sea in Jordan. There, she developed a routine of sunbathing and bathing in the sea that she believes played a key role in reducing her symptoms, but when her psoriasis symptoms worsened in the months after coming home, she returned to traditional therapies, like an oral systemic and various biologics. “I have to be on medicine. There's just no alternative,” she said.
More recently, she developed back pain, which she discovered was likely due to PsA.
“I literally woke up one morning and was struggling to get out of bed and put my pants on,” she said. “It would kind of come and go. Some days I would wake up and feel normal, and some days it was hard to move positions in bed. It was weird.”
Henderson said she is currently on a biologic indicated for both psoriasis and PsA. She says, for the most part, she is doing well. Her skin is nearly clear with only some constant lesions on her elbows. Her pain has also been minimal. When she has bad days, she attributes it to lack of movement.
“The less movement, the more it hurts. But what am I supposed to do? I have to study. It's just tough,” she said of finding time to study as a medical student while also taking good care of her body.
She has grown more confident – both in speaking up for herself and as a person with a chronic disease that is visible on the skin. Henderson no longer allows her visible presentation of the disease to impact her day-to-day life.
“I've come to learn to advocate for myself. My mom used to do it for me when I was younger, but now I do it,” she said. “There's just no way around it. If things are taking too long, or if you're not being kept in the loop, you have to advocate for yourself. You need to make sure that you're being taken care of.”
She also noted that it has taken time for her to get to this place of self-acceptance – to be able to show herself and her skin without feeling embarrassed.
“Not until recently have I really been able to embrace this and to realize that I am worthy, I am me, and that’s okay,” she said.
For others who may feel embarrassed, her message is simple: “You shouldn’t change your life because you’re afraid of what people think. You can't do anything about it. You're only going to be missing out on life if you try to hide yourself. So don't do that.”