An interview with “Mary” a young mom whose son “John” has suffered with Psoriasis for almost a decade. Interview by Nicole Keefer, RN, former Neonatal Intensive Care Unit Nurse, currently a Clarify Clinical CarePartner.
Nicole: Being a parent is often like working in an emergency room. Someone is always coming and going, needing a crisis resolved. Just as you think it’s time for a break, one more catastrophe walks through your front door.
As parents we are forced to wear many different hats during the course of a day, leaving us tired, spent and ready to cry ourselves. How about when your child is sick or has a cold? It’s like a piece of ourselves is broken, isn’t it? Now imagine what it would be like if your child had a chronic disease that never went away? How would that impact you as a parent? What if the disease affects how your child looks? What would people think of them? What will they think of you as the parent? What must that be like? I recently spoke with a mother whose child has been living with psoriasis for almost a decade. Here she shares what some of her struggles have been on her son’s journey with psoriasis.
Nicole: How has dealing with your child’s psoriasis impacted the life of your family?
Mary: “As a parent, you want to be able to fix things when something goes wrong with your child. You want to be able to get the medication, to make it all better and go away. To have a disease like psoriasis, that isn’t curable just controllable…it’s difficult.”
Nicole: What makes it difficult?
Mary: “Knowing there’s this great kid, but you worry all the time about people looking at him and thinking he’s not taking care of himself or that I am not taking care of him because he has raw spots or scales on him. To me it’s more what are people going to think of him or us? I don’t want people staring at him and making him self-conscious.”
Nicole: Do you find it hard to parent your son when it comes to things related to his disease?
Mary: “It’s really hard. I feel like I constantly walk a fine line between nagging him to take his medication and put on his lotions and not nagging enough. I worry that I am making him more self-conscious because I am always reminding him to do his topicals. I want to teach him that this is his body and he needs to take care of it, but not make him feel like everyone is going to stare at you if you don’t take care of your skin.”
Nicole: Were the topicals he was using working for him?
Mary: “They worked but as soon as he would stop using them, it would flare up again. His skin would just go back to what it was.”
Nicole: That must have been very frustrating as a parent. You recently starting using light therapy to treat his psoriasis. Has that been working better?
Mary: “The results were great! He did SO well and the results seem to last much longer. But it was only available at a couple of clinics near us. It was a couple times a week for only a few minutes. He was in high school and the school band and it was really inconvenient to get him there. I was relying on my mom to help us because I had to work and my other son would have to go too. The light therapy had great results but it just wasn’t convenient. He did really well after only a few months but it was so inconvenient, so we stopped. We recently were using a new in home therapy and he has done so well with that.”
Nicole: Why do you think he has done well with the Clarify Medical Home Light Therapy System?
Mary: “I think it’s because he was in control of it and could do it himself. We sat down when we got it and set up a routine of when he would do it. He would get the reminder on his phone and know when to do his treatment. It was so convenient and simple to us. He worked it into his routine and I didn’t need to nag him to do it. It made him more independent. With the lotions and topicals, there is a very strict routine you have to follow to apply them. With light therapy there is not. He can do it himself, which as a parent is great to see.”
Nicole: Do you feel like there is a lot of support in the community for parents of children with psoriasis?
Mary: “I’ll be honest, I’m on social media, Instagram and Facebook and I follow all these psoriasis posts but I don’t see it in our everyday life. So it feels like you are very alone in it, like he’s the only kid in San Diego with psoriasis. Because people cover it up and I don’t want that for him. He recently met a woman while on vacation who had been living with psoriasis for over 40 years and she was talking to him about life with psoriasis and the itchiness and things as the mom I don’t understand. I live with it everyday but not like he lives with it. For him to have talked to someone who has lived with it was really great.”
Nicole: What message would you share with other parents who have children living with chronic psoriasis?
Mary: “Tell them to wear their skin proud! Don’t be self-conscious, this is the skin they were given, don’t hide it! Wear shorts if you want to wear shorts. Be there as a parent, listen to your kids and learn how they feel about their psoriasis, don’t just be a parent who’s going to treat their kids psoriasis. Get their input on their treatment and let them have a say. They are the ones living with psoriasis.”