Talking about your condition with adults is hard enough. How — and how much — should you share with your kids? A father and psoriatic arthritis (PsA) advocate shares his experience and tips.
“Daddy can’t look after you safely today. The ladies at the nursery will do a better job.” I will never forget how these words fell from my lips like icy air as the punch of parental guilt struck me in the center of my chest.
On this particular day, I was in a lot of pain. I had slept poorly from the burning-hot aching in my joints, and I had spent my sleepless hours wondering when it would be considered too soon to take my final pain relief for the evening and when it would be too late for me to parent safely in the morning.
So, when my son woke far earlier than usual, just as I had drifted off, my stomach dropped quicker than the realization of what lay ahead.
Parenting with PsA is a daily journey of sacrifice and pain management. We manage to put on brave faces for our little ones from a place of strength that we’ll never fully recognize as our own.
On that painful day, my son planted himself firmly on the bottom step of the stairs and refused to budge. When I asked him what was wrong, his reply instantly had me in floods of tears: “I want to stay at home with you, daddy. I don’t want you to be sad.”
He was just 3 years old at the time.
This disease of ours regularly reminds me how it touches far more than the ones diagnosed.
I share this account because it perfectly tells the two sides of every parent’s PsA flares.
That morning, it wasn’t about the visibility of my rashes or the soreness of my skin. The pain in my knees wasn’t the issue for me, either. Instead, it was the lack of sleep, the fatigue, and the low mood that inevitably follows when your mind has far too much time to fill the void in the stillness of the night. Worst of all was the guilt.
I knew from the moment I opened my eyes to my son’s energetic smile that I couldn’t meet his needs that day. The pressure we feel as parents in those moments is immense.
On some level, my son knew it, too. Unprompted, he asked me if I wanted my medication. He told me I “needed to rest.” He recognized I was sad and didn’t want to leave my side. At that moment, I was as proud of him as I was heartbroken that he read the situation perfectly before daddy had even said more than a “good morning.”
This disease of ours regularly reminds me how it touches far more than the ones diagnosed, and this morning was no different. I hate how it impacts those closest to us, those we love the most. In this case, my innocent 3-year-old son.
If you’re also a parent living with PsA, I’m sure you can relate to the challenges that come with not only parenting while you’re in pain but explaining the condition to your children. Here are a few tips that may help.
My son’s intuition didn’t happen by accident.
As a Brit, I grew up in a very stereotypical family unit. My dad worked all day, and my mom stayed at home. If you hurt yourself, you were expected to “run it off.” If you felt emotions, you kept them to yourself — something that doesn’t come naturally to me. So, even as a child with a visible disability from juvenile idiopathic arthritis, my limitations or how they made me feel were rarely discussed.
Only you will know what is age appropriate for them, how to deliver it on a level they will understand, and those fine lines between enough information to support you but not enough to upset them.
I didn’t want my son to be another man in this world who didn’t think he could ask for help, who couldn’t talk about his feelings. So, early in my parenting journey, I decided not to hide my disability from him and, more importantly, how it made me feel to live with PsA.
Ultimately, it is your choice how much you want to share with your children regarding your experiences and the impact of your chronic condition. Only you will know what is age appropriate for them, how to deliver it on a level they will understand, and those fine lines between enough information to support you but not enough to upset them.
But I encourage you to share how it makes you feel, if nothing else.
PsA impacts our plans, goals, opportunities, relationships, quality of life, and much more. My toddler, now 4 years old, doesn’t need to know about many of these significant life impacts. But he does need to understand how my condition impacts him.
I have seen firsthand how my mood on a high pain day can be completely unfair and unpredictable for my wife, like a truck pulling out on the highway from her blind spot. If I don’t communicate that I am struggling, the first she knows about it is when something as minor as asking when I am going to cut the lawn triggers a disproportionate detonation no one saw coming.
So, I have a “no surprises” rule with my son. I don’t want him to live in fear of how daddy will react because he doesn’t know how I am feeling or how much I am physically hurting. On the days I can’t do that thing I promised him, I tell him as soon as he wakes. I tell him when I know I won’t be able to physically run around the yard or get down on my knees to play on the floor with his toys.
And when my PsA makes me depressed, I tell him that too. I certainly don’t use words like “depression” or phrases like “negative thoughts,” but I explain on a level I know he will understand. For example, I tell him I’m sad because my knees hurt, that “daddy’s quiet because the pain came back,” or “you haven’t done anything wrong. I just couldn’t sleep much last night, so I’m a bit tired.”
I teach him to ask me, “what do you need?” or “can I help?” rather than asking what is wrong or pointing out my rashes when they are affecting my confidence.
I try to have conversations that show the condition as part of everyday life rather than highlighting its limitations or features. Conversations that nurture empathy over sympathy — or at least I hope. Only time will tell.
PsA impacts far more than our skin, joints, or nails. It damages our confidence, self-esteem, and, most significantly, our mental health. The connections are not always obvious.
If we want our children to understand our experiences, we must help them join the dots from trigger to flare and new rash to low mood. We must help them understand how the uncertainty of tomorrow can negatively impact today.
We have an instinctive desire to protect our children, to shelter them from harm. To expose them to our daily experiences can feel unnatural. Still, it doesn’t have to be a negative experience.
If we want our children to understand our experiences, we must help them join the dots from trigger to flare and new rash to low mood.
My son and I have the most beautiful relationship because his pattern recognition and intuition, which only children have, means he often picks up when I’m having a bad day before I have. He appreciates our time together, like the “sofa cuddle days” we have when I’m in pain or simply my presence when the pain attempts to take my attention away from him.
Our children, the language we use to describe our experiences to them, and the insight we give will shape how tomorrow’s society views people with our condition.
We can never remove the stigma surrounding something as visible as psoriasis or as invisible as joint pain and the mental health challenges we live with. But we can begin to dilute it by starting at home. To educate those around us is to invest in a better future for tomorrow’s PsA patients.
Medically reviewed on March 20, 2023
Have thoughts or suggestions about this article? Email us at firstname.lastname@example.org.
About the author