What you don't want to hear while battling PCS
Esther Lovett is a 17-year-old high school student who has suffered three diagnosed concussions and struggles with post-concussion syndrome (PCS). Esther is writing a blog for the Concussion Legacy Foundation to help spread awareness about the effects of PCS and to reach others suffering with its pervasive symptoms.
I cannot quantify the number of excruciatingly insensitive things that people have said to me about concussion and PCS. I am continuously disappointed with the lack of knowledge and education. Even close friends have said shocking things.
One good friend asked me why I was wearing a soccer jacket when I didn’t play soccer. I didn’t even know how to respond since I had spent so many hours working hard for that team and to be a better soccer player.
A medical professional at a school told me to go get tested for Lyme disease, anemia, and Mono because it seemed unlikely that I could have concussion symptoms for so long. My concussion doctor laughed, and then politely assured me that it was still post-concussion syndrome. Being told that you don’t have PCS and that you have Mono (basically that you’re lying) is offensive.
On a day when I left school early with a splitting headache and had to miss a class, I told a friend why I was leaving early: that I needed to go home and take a nap because of the headache. Her response wasn’t ‘I’m sorry your head is killing you. Feel better!’ but rather ‘oh my god you’re so lucky!’ because I got to leave school to take a nap. This also miffed me—did she not hear the part about the splitting headache?
Unfortunately I hear that I’m ‘lucky’ very frequently. Using that word to describe my situation seems astonishing. I am told that I am lucky that I don’t have to play a sport at school, but people forget that I loved playing soccer and hockey and would do anything to play again. I am told that I am lucky to have “free time” in place of sports. All of that ‘free time’ is spent going to concussion appointments and taking naps since I can’t physically do homework immediately when I get home from school without a rest. I am told that I am lucky to have extended time for testing when I would give anything to complete assignments and tests in the allotted time. Luck is not a word that I would use to describe 1,305 days of headaches, nausea, fatigue, dizziness, vision and hearing issues, and sensitivity to light and noise, combined with the loss of sports. I’ve celebrated three birthdays and three Christmases with headaches. All of that adds up.
I rarely know how to respond to such ignorant and insensitive statements. They usually catch me by surprise. I think especially with friends, it is important to say something. They’re your friends, the people whom you trust with secrets and want to be with. You deserve better than to hear those things and they deserve to know the truth about what is going on with you.
There is a lot of misinterpretation of the word ‘concussion.’ People hear it and think of a short-term injury that isn’t very severe. In my case, concussion and PCS have invaded almost every aspect of my normal life.
There have been so many times where I wish I had said something when someone said something insensitive. I often find it hard to come up with something reasonable to say. Speak up because even if you have already been offended, you might educate that person and prevent them from saying something like that to the next person.
One of the nicest things that anyone has said to me during my struggles with post-concussion syndrome came from a boy in my grade, a friend of a friend. He asked me why I wasn’t playing soccer and I told him that I had had a serious concussion and couldn’t play contact sports anymore. He said, “Oh my God, I am so sorry. I can’t imagine what it would be like if something happened and I couldn’t play baseball anymore.” Baseball was his favorite sport and it meant so much to me for him to project what had happened to me into his own life and think about how much it would affect him. A moment of empathy goes a long way.
I’ve been surprised by how much a nice comment means. If people say nice things it’s usually adults that say I’m strong and that I have handled this gracefully.
It’s nice to hear that I’m coping with the situation, but it’s sometimes better to hear someone tell you that it sucks or for someone to be able to see how it would affect his or her life. I often don’t want to hear that I’m strong because I’m not always. I don’t want to hear that ‘it’s ok’ because it’s not. And please don’t tell me again what a great college essay I’ll have, because honestly I would like to write about something else!