When being normal hurts – Stages of Grief in Chronic pain kids.

This week, with it being back to school, I have found myself talking to several patients and parent caregivers of individuals with chronic disease about this transition.

With each new school year, you can hear the excitement buzzing around on the school yard or on social media of all the kids heading back, excited to see friends and share their aspirations. But for Daniel, and for many others, there is less excitement and a little bit more apprehension.

Daniel had a great first day back to school, but we still had a conversation about him feeling like he’s still ‘the kid with arthritis’, ‘the kid with a suppressed immune system’. People know his story—and we are so relieved that they do, so our community can be there for him—but for a kid or a young person with a disability, even an invisible one, it can sometimes feel like it’s the first thing people know about you or ask you about. When all you want is to just be or feel normal.

I sometimes wonder if that’s almost the very definition of being normal and wonder how many of us are walking around questioning ourselves, wishing we were normal. What is normal anyway? Because if having a life free of pain is normal then I feel like none of us qualify!

But like anyone who has pain—whether it be physical, or emotional—there is a grief that never goes away and with every new situation it pops back up again. We’ve seen it when we have had to take more trips to the hospital; we’ve seen it when we have fewer trips to the hospital. I saw it when we started homeschooling; I saw it when we went back to school. It feels like, with every new transition—like with all grief—kids with chronic pain and rare diseases face their big emotions all over again! And processing emotions is hard and it can come out in different ways.

Some of the things we’ve heard from Daniel at home:

  • When in Denial: “No, I’m not different. I’m fine. I’m normal. Stop telling people I have arthritis! I don’t need help!”
  • When in Pain/Guilt: “If I could only keep up with the other kids, they wouldn’t know I’m different! Why do I have to go to the hospital all the time!? Why do I have to be different? Why can’t I do it! (it being a specific physical activity, like running, climbing monkey bars, etc.)
  • When he’s Angry: “It’s not fair! No one gets me! Why haven’t doctors figured out how to fix me yet!? Why does everyone treat me differently? You’re hurting me!”
  • When he feels lonely: “Not even doctors can understand me; there is no one else like me. It hurts, and there are no answers. I don’t want to be like this forever.”

Often, we see a cycle of these emotions; Daniel might feel them in big ways and then process them and break from them. But often, just like other forms of grief, they resurface again. I can’t offer up advice as to what to do to “fix” these feelings and truthfully—just like these diseases—I don’t know that there is a cure.

Even as a parent I find myself going through cycles of grief when I picture the life I had planned for my child. Even when his pain is controlled and he seems to be doing well, you face the uncertainty of the future and these emotions can once again rear their ugly head.

For so many of these kids and patients with chronic rheumatic diseases and their families, these feelings are common and constant, and nothing can change that. But what can help is when someone who has been on a similar journey comes alongside and says, “I understand, I feel it too,” or when someone who is part of the patient’s care team can say, “I see your pain, how can I help? What do you need?”

Unless you are faced with chronic disease, it’s hard to realize that every transition means facing these emotions. Many might think that when you have something positive happen in your life, like returning to school, or fewer hospital visits, “These are all positive changes, so why am I struggling?” But the reality is that for someone who has faced grief, sometimes the happy moments can be the hardest of all, because you are picturing what could’ve been and what isn’t.

And when you spend so much time surviving, sometimes you forget how to live.

So, if you see my child today at school, or at sports or at his next appointment, please be patient with him: Give him a moment, ask him how he is feeling. Maybe it’s a good day, or maybe it’s not. But what he needs is to not be seen as the boy with chronic disease, but as the boy who is learning to feel alive.

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