Losing the Genetic Lottery with Psoriatic Arthritis

It feels so weird to have the shoe on the other foot. So many times I’ve tried to imagine what life is like for those who love me. My parents, my husband, even my kids- I’ve spent many hours trying to see how their life is impacted by my psoriatic arthritis diagnosis. But it wasn’t until recently that I was truly able to really have a deeper understanding of what it means to love someone diagnosed with psoriatic arthritis.

Losing the genetic lottery

You see, my daughter-only 7 years old, was recently diagnosed with the juvenile form of psoriatic arthritis. She was officially diagnosed with Juvenile Idiopathic Arthritis (JIA) with the subcategory of psoriatic arthritis. I’ve worried for quite some time that one of my children would develop this, or another one of the many autoimmune conditions that each one is at an increased risk of developing thanks to my faulty genes.

Fears become reality

I’ve written several times about the fear that has plagued me since my diagnosis, that my fate will also be the fate of my children. Now that the fear has come to fruition, I’m not entirely sure of what to do with myself. As an adult, I feel somewhat equipped to make decisions about my own body. I’m prepared to accept the consequences or side effects of my choices. Medications, exercise, diet, all of these choices are mine to make about my own body and to live with the results of my own choices.

But it isn’t just about me anymore. I am now not just making these choices for myself, I am responsible for making these same difficult choices for another living person. A tiny, growing person, too young to make these difficult decisions for herself. And yet, she has to live with the consequences of these choices that are outside her own control.

Bigger choices, bigger consequences

Many people find themselves in a similar boat every day. That is a part of parenting, making choices for those too young to make them for themselves. As parents, it is our job to decide about what is in the best interests of our children and to carry the burden of those choices every single day. But somehow, these choices I need to now make for her seem so much bigger.

Is there a chance she could develop cancer from these treatments? Yes. Is there a chance that she might one day resent me for the choices that I’ve made for her? Yep. Will these medicines make her feel even worse than she does right now? More than likely, yes. My fears in the middle of the night scream that I can’t do this. I’m not strong enough to make these choices for her. Is this my fault that she has lost the genetic lottery?

I’m not sure if I’m strong enough to carry this burden. 

She was made stubborn on purpose

I hate to see her in pain. I hate looking down the road at what her future might hold. More than anything, I want her to know that there is nothing in the world that she can’t do. She is strong. And Oh. SO. Stubborn. Of all my children, perhaps she is the one with the strongest stubborn streak necessary to fight the effects of living with this disease every single day.

Until we have that ever-elusive cure, we will continue to fight. Now, my daughter and I as a team will take on this disease together. And I pray every single day that she knows how strong she is. I pray that she never lets this disease hold her back from doing anything in this world she wishes to do. I sincerely hope that I can guide her on how to listen to her body and how to make good choices as she learns how to make the most of every “good” day and don’t let the bad days keep her down for too long.

Putting everything into perspective

She will have a long path in front of her as she learns how to advocate for herself (something we’ve already started practicing) and how to make informed choices. But most importantly, I hope that she learns that life with PsA is just a small piece of the puzzle that makes up the extraordinary person that she is.