Three Tips for Parenting with Psoriasis
Deciding to have kids was a scary choice for me. Every time one of my boys has the smallest blemish, my mind instantly wonders if they are developing the disease that I viewed as a curse for over half my life. Our pediatrician has had to reassure me on numerous occasions that the redness or dryness I observed was not psoriasis.
So far he has been right. None of my boys have been diagnosed with psoriasis at this point in time. I still have days I worry, but I try instead to implement these habits into my everyday life.
Be Positive About My Skin
This is the tip I am going to touch on first, because it was the one that was hardest for me to grasp. To be honest, I still have slip ups once in a while, but I try my best to not slam my skin in front of my boys.
Old me used to sit around all day complaining about all that my skin hindered me from. When my skin cracked and bled all over my freshly laundered clothes, I would grumble without cease. I would decline invitations to join my family at the pool because I didn’t want anyone to see my plaques. I would blame my skin because of how much I sweated when I had to wear long sleeves on our family vacation to California. I would tell my oldest boy not to use the word “hate”, but then I would immediately turn around and talk to my wife about how much I hated my skin.
One day I woke up. I realized that I was a role model. If any of my boys do get diagnosed with this disease, they were going to think it was a death sentence because of the way I portrayed it. That was the day I started my YouTube channel. Now, my oldest son sees it as something “cool.” He asks all of his friends if they know what psoriasis is. When he sees someone with another condition, such as acne or vitiligo, he doesn’t cringe. Instead, he asks questions and befriends them. By being positive about my skin, I taught my kid compassion and acceptance of others who are different without even knowing it.
Be Nice to Myself
Other than the very visible plaques, the next hardest symptom of psoriasis to deal with is fatigue. This is one that I didn’t understand at first. I didn’t know how my plaques were connected with being so extremely tired. The truth is that they are linked. Being in a constant state of inflammation is exhausting!
Some days I have all the energy in the world. On those days I take my rowdy crew to our favorite parks. One park is a castle on a hill that requires climbing up old concrete steps, and the other is one of the largest parks in Portland. These are no easy feats, but when I have the energy, they make for some of the most fun adventures. Unfortunately, I don’t always have the gusto to get out with my kids and do these things. I used to beat myself up about this and feel like a lazy parent. Don’t make the same mistake I did. It only leads to a vicious cycle of self-punishment.
Instead, I have found ways to have fun at home without using up all my energy. Our favorite thing to do is build LEGOs. Thankfully, my sons have picked up on my nerdy interests, so we find all sorts of kits to replicate our favorite heroes and villains. Another low-impact activity is card games. A simple game of Go Fish or memory matching provides learning and interaction all from the comfort of my favorite chair. On the really low-fuel days, popping in our favorite movie and snuggling on the couch with popcorn gives us time to bond and reenergize together.
Almost everyone I have talked to with psoriasis has experienced hardship and hurdles at some point in their journey. Some have faced insurance denials and step-therapy restrictions. Others have gotten the wrong information from a well-meaning doctor. Even more have had treatments fail time and time again.
I have experienced all of these things, and if my sons ever develop this disease down the road, I do not want them to have to face even one of these barriers. That is why I am so passionate about advocating for better treatment, lower costs, and higher awareness among practitioners. The best place to start is in your own community. I know it is scary and you may be thinking “there is no way I can make a difference”, but you can! Just like recycling hands down a better earth for our kids, advocating can pave the way for better healthcare for them.
Start by signing up for Advocacy Alerts at the National Psoriasis Foundation. These will let you know what legislative efforts are happening in regards to psoriatic disease in your state. It is also important to get to know your local representatives. Ask about town hall meetings in your area that address healthcare. This is a great way to represent chronic illness and voice the unique barriers we all face. Finally, spread the word whenever you can. Don’t be afraid to share your story. It has tremendous value, and you will be setting a great example for your children and the generations that follow.
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