When You Perceive Me as 'Difficult' Because of My Illness

I’ve never wanted to be “difficult.”


Everyone around me has always had more energy, more “Yes! Lets go do that!” than I have…If a group of people were hiking up a hill, I was the last person to reach the group. The group would be tired of waiting and they would start hiking as soon as I reached them – I never got to rest. Eventually I would say “no” to hikes up mountains, to ski trips and to picnics in the park. I didn’t want to hold people back and I didn’t want to be seen as difficult. I hated saying “no.” I hated being difficult. But as time went by, that was my label: “Christie is difficult.”

I once traded Yankee tickets that were on the field over the Yankee dugout for lesser tickets because they were in the shade. I was so grateful to that family for giving me their seats. My boyfriend at the time would not trade his ticket and my family was furious with me for ruining their family baseball outing. They didn’t understand that my children and I could not sit in 85 degree heat and humidity in direct sun. Again, I was being seen as difficult. The thing is, I would never have put my boys or myself in that situation. I would not have gone to that game given the weather, but I didn’t want to be difficult, so I went. Yet, because I had to take care of myself and my children I was dubbed as difficult.

The hardest part of having a genetic disease that is invisible is that even your family will forget that you have it. They can understand fear, infusions and medical explanations, but they cannot understand what it is like to live day-to-day with an invisible, chronic illness. They do not understand that when you are being “difficult,” you are really trying to make sure that your children are safe and not in too much pain from heat and sun. People you love do not understand that when you opt out of a picnic on a beautiful day, it is simply because you are afraid of being perceived as difficult.

I know that you are reading this and it is probably something that you cannot fully understand. That is OK. Just know that my writing it down for you is my way of explaining that I don’t want to be difficult, I want to be understood.

So I leave you with this question – the question that always seems to drive my point home when discussing my boys with their teachers. It isn’t, “How sick are they?” It is, “How is it that they look so well given how sick they are?”

For anyone who has ever felt “difficult,” I want you to know I understand that it can be a lonely feeling. There is nothing wrong with taking care of yourself and your children. We simply need to learn how to tell the people who love us that we aren’t difficult, we are just different.

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