Talking to My Kids About My Fibromyalgia Diagnosis

It was a two-and-a-half-year odyssey from the beginning of my chronic pain to my fibromyalgia diagnosis coupled with being newly predisposed for soft tissue injuries. This leaves me more easily injured and then in a lot of pain from those injuries; all of this clarified what I’m living with. Then, it was another six months to understand my new reality and to even begin to figure out how to work with it. Emotionally, this has been tough, but one of the most difficult parts was sitting down to talk to my kids about it.

• What is Fibromyalgia?
• What Are Common Fibromyalgia Symptoms?

I’ve tried hard throughout my girls’ lives to ensure that they grow up feeling safe, nurtured, loved and free to focus on just being kids. But my diagnoses left me feeling as if I was failing them: I can’t be as strong for them as I’ve always been. I can’t give them all of the experiences and adventures that filled our past years. I’ll need more help from them, forcing them to quickly grow faster than they should. The realization of the various ways and moments that will change washed over me, and left me devastated for weeks. My inescapable conclusion was that, instead of providing them the foundation for their growth and for them to go out and achieve their dreams, I was creating a world suddenly harsher and scarier, and I’d leave them more afraid to engage with the broader world and less prepared to do so. As a parent, feeling like a failure is soul-crushing.

Still, I’d hit a point at which my new limitations were obvious, and “injuries” can’t last forever. So, it was time to sit them down and explain things. I didn’t feel prepared, so I researched how to do this. Some conditions have great literature to support conversations with kids, but fibromyalgia isn’t one of them. It isn’t a well-understood condition, and the chronic pain and effects on digestion, the immune system, energy and mental functioning vary significantly from person to person. A doctor and the therapist I was using for pain management support helped identify four key aspects to the discussion: first, be honest; second, talk in an age-appropriate way; third, make the diagnosis feel tangible instead of some abstract medical term; lastly, ensure their understanding through interactive discussion and letting them drive the focus.

After practicing in my head and with my wife enough to feel like I established some ways to approach this discussion, a boring Saturday lent itself to sitting down with them. It was scary and emotional, but once into the discussion, it was important to simply immerse myself in it and let the conversation develop organically.

My two daughters are 11 and 13 years old, so they’re old enough to understand a lot but not enough to possess a deep body of knowledge. I helped them actively relate to some of my issues by using certain illnesses and injuries they’ve experienced, then explaining that my situation permanently combines those things. They also helped steer the conversation by adding other injuries or speaking to how they’d feel in certain situations, which confirmed their understanding.

When speaking to how life will change, it required candidly admitting that I’ll need their help more often, and they’ll have to take on more responsibilities because I can’t be the person I’ve been up until now. While that was heavy, there were also a couple of interesting outcomes. One was creating laughter amidst a serious and emotional situation, such as proclaiming, “Good news, girls! You know how you hate backpacking trips? Well, no need to worry anymore!”

Another unexpected outcome was the empowerment that this can bring. I’ve tried hard to create situations that will give the girls experiences and tools that they can build on as they grow, as they face bigger challenges and as they pursue their dreams. Now that I need to approach things differently, I’m unclear how best to continue such efforts. This means we’ll all need to work together to experiment on how best to push the kids outside of their comfort zones. We’ll need to collaborate more on how best to create new experiences, and how to construct the types of adventures that they can engage in and grow from. This creates a respect and forum for their developing abilities.

The discussion went on longer than I’d planned, and it wasn’t perfect. But I chose to not beat myself up. Life is sometimes messy and is seldom perfect. It was an emotional buildup and a draining conversation. But I conveyed what I needed to, the girls understood and weren’t freaked out and it transparently set the stage for whatever comes next. I think it’s important to acknowledge successes wherever I can, and this was an important one for me to declare.

This diagnosis drives home how much life can shift on you. It also highlights how your life is a combination of the events impacting you, your decisions about how to perceive those events and the ways in which you choose to continue living.

I still have no idea where everything is headed, nor how much my diagnoses will ultimately impact my future. But I know it’s important to still live as vibrantly as I can. Now that my diagnosis is out in the open with my kids, I can take pride in modeling for my daughters that I will push myself, persevere and continue to seek ways to engage with the world around me. If my girls draw anything from my example, it strikes me as a way to convert an awful situation into a point of pride.

So, for now, I’m just going to be the best dad that I can be, whatever my situation, and take things one step at a time.

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Thinkstock photo via Andrew Olney.