Tuesday, January 3, 2017
While boarding a flight home from Iowa today with my siblings a little girl who couldn't have been much older than four was stopped in front of my seat. She stared at me for a second and very loudly asked her mother "Why does she have to wear that?" [For those who don't know I am immunocompromised and I have to be careful (especially during cold and flu season) to limit the contact I have with germs because my body simply can't fight off the simplest of illnesses. So I often have to wear a hospital mask in public to filter out the germs in the air I breathe. For me getting sick could very much mean a several day hospital stay. Plus I just got out of the hospital less than two months ago, so I'd rather not go back anytime soon.]
The mother was obviously mortified as most would be, but she was silent when (most parents I have met very quickly shut their child down from asking such questions.) I chose to take the opportunity to speak. Using an age-appropriate description I explained I have a disease that makes it hard for my body to fight off the germs I come in contact with so I have to be super careful and do everything I can to make sure I don't get sick.
The little girl was satisfied with the answer, the mother was relieved the question didn't make me upset and told the little girl that's exactly why we need to wash our hands often and keep our germs to yourself.
The point I am trying to make is to let your children ask questions. Don't force your child to be quiet and pretend as those your kids shouldn't know about "people like me." One day maybe your child or your grandchildren could be in my situation. People like to ignore issues simply to pretend as though those problems don't exist because they don't affect your family. Children are only curious and want to learn. Most adults wouldn't dare to ask a similar question for fear of hurting one's feelings. It's time we get comfortable with being uncomfortable.
Most of those like myself don't mind the questions because it's just another part of our everyday life. As for me and myself, I'd rather other people understand my life because it allows them to be more accepting and empathetic to my situation. It shows those people that I too am a real person just like one of them even though I've been diagnosed with multiple rare diseases. Plus the more people who know about my disease means the more awareness, education, research, and advocacy can be put together so we can be one step closer to a cure!