The Mighty Logo

The Different Facets of Coping When Your Child Has a Rare Disease

A rare disease diagnosis on a child is not easy on a marriage. Going through a stem cell transplant is not easy on a marriage. It is not uncommon for a marriage to go through a rocky period during this process. I know this first hand.

The year of diagnosis and transplant was one of the rockiest times in my marriage and led to an implosion of emotions, stressors, frustrations, fears and anger. Since we processed and coped differently, instead of showing understanding to a different way of coping, we showed anger frustration and sadness because we had a hard time seeing the other person’s methods as valid. Since that implosion my husband and I have worked very hard to work together, to heal together, validate each other and to rebuild together even stronger. In the years since that implosion, we have learned that it is OK to process differently and to feel differently to need different things. We have learned how to give each other the ability to process and cope the way we each need.

We have learned …

You might need to know all of the medical details to feel in control.
You might need to let someone else make the big decisions because they are too overwhelming.

You might be the one overwhelmed dealing with all the medical appointments and information.
You might be the one overwhelmed working full-time and not being with your sick child.

You might be the one trying to hold down the fort at home.
You might be the one holding down the fort at the hospital and therapies.

You might be the one who needs to know exactly what is going on and the one who asks all the questions.
You might be the one who just needs to know what is shared in this moment and you can’t think beyond that.

You might be the one who needs to think about and plan for the future whether it is one day, one week, one month or one year away.
You might be the one who can only focus on this minute, this hour or this day.

You might be the one who is trying to focus on being a parent as well as a spouse.
You might be the one who can only handle being a parent at the moment.

You might be the one who makes a point on focusing on self-care in order to survive.
You might be the one who needs self-care but can’t focus on that right now in order to survive.

You might be the one who needs a routine and has to stick with it in order to function.
You might be the one who needs to change up the routine in order to feel “normal.”

You might be the one who needs to talk things through.
You might be the one who needs to sit in the silence.

You might be the one who needs to lean on other people and the supports that are offered to you.
You might be the one who needs to lean on only one or two people to get through the situation.

You might be the one who exhibits hope regardless of the internal fear.
You might be the one who exhibits fear regardless of the internal hope.

You might be the one your child goes to for comfort.
You might be the one your spouse goes to  for comfort.

You might be the one responsible for sharing information with family and friends.
You might be the one who avoids being responsible for sharing information.

You might be the one who projects anger during the hard moments.
You might be the one who projects sadness during the hard moments.

Each way of processing and each role you take on is a valid way to process and cope. It is important to give space, grace, and understanding to your partner while they process and cope in their own way regardless of how different it is from your way. In the midst of the hard stuff, it is not easy to remember a different way of coping is not a wrong way of coping. But with space, grace, and understanding you can hopefully avoid some of the turbulence that a marriage might face during diagnosis and treatment.

Photo credit: Kate_Maleva/Getty Images

Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home