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Sometimes, when I tell people about my symptoms, I get a reaction like, “I am tired, too”, “I have a headache, too,” or, “We all have bad days; not every day can be perfect,” but saying things like this to someone who is dealing with post-concussion syndrome / head injury does not help at all.
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It Made Me Feel Misunderstood
Receiving comments like this made me feel more misunderstood than ever. It felt like they thought my symptoms were just “bothering” me, instead of the reality that I could not handle my post concussion syndrome symptoms. I had to stay at home, not because I just “wasn’t feeling okay,” or I was “feeling sad;” I was feeling worse than just “not okay;” I couldn’t handle it.
For example, on some days, I just had to lay down for hours before I could do the dishes. So, my symptoms were not just “bothering me;” they were knocking me down.
Furthermore, I was not just “feeling sad;” I felt so emotional that I had to cry all the time without even knowing why. It happened many times when I pushed myself to go outside my home; I would burst into tears in a supermarket, not because something happened but because I felt overwhelmed by everything. Every time I felt overwhelmed, I had to cry to let go of the feeling.
I Didn’t Have Any Control Over My Body
I think the crying part was the hardest to explain to others. I had absolutely no control over it, so I didn’t know when I would feel like that. In the morning, I might feel okay and decide to see a friend in the afternoon, not knowing that it would be too much for me.
When I had to cry in public, people always thought there was a reason for it. They said things like, “It’s normal that you feel sad because of what happened,” and of course, this was part of the reason that I was crying, but not the main one. Yes, I didn’t feel great because of my concussion, but I was not crying because I felt sad about it at that moment. I was crying because I felt overwhelmed and couldn’t explain how it felt, so I stopped trying to explain and instead said that I was just feeling sad because of my symptoms. I chose the easiest way, instead of trying to explain the truth because I knew they wouldn’t understand. Again, I didn’t blame them; I just wanted to save my energy.
Read my other blog: What having a concussion feels like and how to explain to others.
The 11 Reactions that Bothered Me the Most
“I don’t fall asleep fast, either.” It wasn’t just that I had a hard time falling asleep; it’s that I spent too many hours awake and not feeling well.
“I have headaches sometimes, too.” It wasn’t just a normal headache.
“I feel tired, too.” It wasn’t just a sleepy kind of tired; ’it was more like I was tired of everything. My whole body was exhausted.
“Yes, that sound/light is bothering me, too.” ’It wasn’t just bothering me; I really couldn’t handle it.”
“I planned too many things this week and feel overwhelmed, too.” I felt overwhelmed without even planning anything.
“I can’t come to your house today, either; I have a hangover.” I felt like I could never leave the house at all.
“We all have bad days; just accept that life is not perfect.” It wasn’t just a bad day, and I didn’t know how long it would last.
“Yes, my eyes are tired from my computer, too.” My eyes were not just tired; they were not functioning well.
“Maybe you should talk to a psychologist; that will help.” Maybe it would help a bit with the emotional part, but when people said things like that, it felt like ’they thought it was all in my head.
“We are all getting older; no one is as fit as they were when they were 18.” It’ wasn’t about getting older.
“Maybe you should try not to think about your concussion; don’t make it the main thing in your life.” How could I not think about it when ’it was always there? When I ignored it, I ignored my boundaries, and my concussion symptoms got worse.
I Know They Said it to Help Me
I know they said all those things just to help me and make me feel better. I understand that it’s not easy to help someone who is experiencing something that you don’t know anything about. They didn’t know how it felt to deal with those symptoms every day, and I was glad that they didn’t, but hearing all those comments did not help and made me even feel worse.
When strangers or people who are not close to me make these kinds of comments, I don’t tell them that it bothers me, but the people who I am close with know that it doesn’t help me, and they don’t say things like this anymore.
Only People with Post-Concussion Syndrome / Head Injury Really Understand
I don’t blame the people who make comments like the ones above, but it does make me feel misunderstood. When I talk to people who have post concussion syndrome / head injury as well, they tell me the same things. I love talking to people who are in the same situation. I only have to mention just a few words, and they totally understand what I mean. That’s so special, and I am so grateful to have the opportunity to talk to others who understand.
During my first two years, it felt like I was the only one with these symptoms, but now, in this community, I feel surrounded by so many lovely people, and I realize that I am not alone in this anymore.
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Have you tried many things to reduce your symptoms?
But do you notice... It's not progressing as quickly as expected? Do you feel that much more is possible but that you've just hit a roadblock on how to best achieve it?
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