Comforting Other Parents
Do you recognize this?
It could always be worse
You are in the hospital with your child, and you get a call from a good friend. As you vent as a parent, you hear “It could always be worse!” on the other end of the phone. And then the comparisons begin. All kinds of syndromes are put next to each other to convince you why your problem is not a real problem. To call it a problem for convenience. Or else again, every effort is made to convince you why your problem is a serious problem.
I've made that mistake in the past too. That you are in the hospital, looking around and being grateful that you are not in the shoes of another parent. I found out this was cruel when this same thing happened to me. I will never forget the feeling. And I think it will be recognizable to many parents.
The wrong kind of advocacy
I got a call from a lady who wanted more information about sickle cell disease after she saw my children's book in the news. She was very enthusiastic and even wanted to write a nice article about my daughter. "Waw that’s amazing!” I thought when I heard her enthusiastic proposal. We worked on the content for about a month, and she proudly sent me screenshots of the group of kids she shared it with. Full of enthusiasm I started reading the conversations until I suddenly had the feeling that someone stabbed me very deeply with a knife.
There was a video of my daughter, where she spoke very proudly and confidently about her condition. And so, this video was viewed in that lady's chat group and at one point that lady made the comment to those children: “This girl has sickle cell disease. Do you see her? Be thankful that you are healthy because it could always be worse!”.
Shock and disregard
I was in shock; I didn't know what I was reading! So, I read it again because I thought I had made a mistake. And then I read it again. And yes, I knew for sure: “This hurts!”
I called that lady and indicated that I want to have all my daughter's content removed within 1 hour, because this is not the way we work on sickle cell awareness. She didn't understand, and I told her it's okay if she doesn't understand. But I was so done with this.
The most painful thing that has ever happened to me...
The most painful thing that has ever happened to me is that people look at me or my child and think, "Luckily I'm not in their shoes!" And so, I caught myself dealing more consciously with other parents and illnesses. I no longer feel the need to compare or to “comfort” myself by thinking it could be worse. Because that is not correct.
Empathy and support
You cannot compare any illness, because every family experience what they live with as hard and sometimes even unbearable. Empathy is a tricky thing. If you don't know what to say to someone who is going through a difficult situation, never say, "It could always be worse." Rather say, “You are on my mind," “If you need a listening ear, I'm here for you.”
Look for words that are supportive. Because when our child is in the hospital, we as parents usually must watch helplessly as the small body is deteriorated by the pain.
Picking ourselves up again
As parents, at times we want a shoulder to lean on, someone to listen to us. Someone who makes us feel understood. It's okay to be angry at the world for a while. That it's okay to feel powerless. Because ultimately, we as humans only have a limited amount of patience and energy. And then you must discharge every now and then, maybe even cry, complain, or write everything down. Then we pick up ourselves again, and we can be strong again for our children.
Anonymous Poll: Which of these have you experienced as a result of your disease? (choose all that apply)