Should We Shelter Our Children From the Reality of Life with Psoriatic Arthritis?

Our children are meant to be protected. They should be sheltered from the harsher realities of life. In most cases, it is pretty clear to me what my kids should and should not be exposed to at their young ages.

When it comes to daily life with psoriatic arthritis, sometimes what we should and should not show and tell our children can become a little unclear.

Communicating with children about psoriatic arthritis

Viewing their parents as strong and solid allows children to feel safe, secure, and protected. My children view their father as their own personal hero and truly believe that nothing can hold him back.

Meanwhile, I struggle to hide the symptoms of my disease from my children. I strive to protect them from many of the harsher realities of living with psoriatic arthritis. Often at great cost to myself.

What do children think?

Which makes me wonder, am I doing more harm than good by keeping so much from them? I spend hours upon hours advocating to spread awareness and understanding about life with psoriatic arthritis, yet, I’ve never sat down and spoken with my own children about it.

Sure, like most parents with PsA, I’ve had on more times than I can count, used the phrase, “Mommy isn’t feeling well today.” But not once have I sat down with them and explained to them why I wasn’t feeling well.

What’s a parent to do?

It is really difficult to know what to do. The first time I heard one of my children (my youngest in fact) ask me about it, I wasn’t sure what to answer. “Mom,” she said in her best 3-year-old voice. “Do you have the ‘sorry-attic’? Is that why you don’t feel well?”

I think, to her, she thought of it as a cold or the flu. Something that you “catch” and pass on to others. I was certainly caught off guard. I hadn’t planned a conversation in my head so I floundered for the right words.

To be honest, I don’t remember what I said, but I’m sure that I didn’t delve into the fact that my body is basically eating itself.  I certainly didn’t explain to her that many days, just getting out of bed is a herculean feat.

How can we even explain it?

I wish I could say that I have some magical words to explain it to my children. I wish I knew how to tell them about it, without scaring them.

Or let’s face it, I really don’t want them to see me as anything less than the best parent I try to be. I don’t want them to feel any less safe or secure than they did before.

I know I will never reach the hero standard that their Daddy is. But at the same time, I never want them to feel like they got the “raw end of the deal” in the parent department.

Reality vs responsibility

Balancing reality with the responsibilities of parenthood is a daily struggle for me. Yes, I wish I had better answers. Perhaps, advice or some magical how-to guide for how to handle it so that I could share it with the world.

The truth is, there are certainly good points to be made for sharing the ups and downs of this disease with our children. They need examples of how to be strong in the face of adversity.

They need to know how to view people with empathy, understanding, and acceptance.

Open and honest

Perhaps through my example, they could learn not only how to offer help with dignity and grace, but to accept help as well (I’m still working on this one).

Maybe they don’t need to know ALL about it. They don’t need to know what my face looks like when I’m trying to bury the pain. They don’t need to see me walk about like a zombie the first hours of the morning. They don’t need to be faced with these things to know that they are loved, cared for, and protected.

Yes, being open and honest with them is important, but at the same time, so is protecting their all-too-short childhood.

Parenting always comes first

One thing I know for sure, my love for my children will always come first. I will always do my very best to prepare them to be kind, confident, and caring people.

If that means I need to fight through the pain and fatigue some days to make that happen, so be it. I know the next few years are going to be important. The things my husband and I choose to share with our children, and how we do that, will be something we have to take one step at a time.

I know it won’t be easy to figure out the right thing to do, I can only pray that when the right time comes that they’ve truly become the kind, confident, and caring people that I always wish them to be.