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When you have a concussion or post concussion syndrome, you know that each day will be different. On some days, you can do a lot of things; on other days, you just can’t. In my experience, this was so hard to explain a concussion to others, and I still struggle to explain myself on harder days.
On the Days I Feel Good...
When I feel good, it feels like I will never have a setback again in my life. It feels like I will always do those things, and I express this feeling to the people around me. Then I am so happy; I talk a lot more and even suggest things we can do (e.g., going out to the terrace). I really enjoy those days because I know it’s not always like that, and I really need to be grateful when I can have a day like that.
In the beginning, my friends and family always thought that I was healed, and that there was no way I would go back to the person who couldn’t do those things. They saw it more like the flu; if you have the flu, you can’t do things, but when you feel better, it’s over, right? Unfortunately, we all know it doesn't work this way with post-concussion syndrome, but it’s so hard to explain this to someone who is not experiencing it. I don’t blame them for not getting it; I wouldn’t if I didn’t experience it myself.
On the Days I Don't Feel Good...
It seems like there is always a setback after I feel good. My setbacks aren’t as bad as they were in the beginning, but they are still there sometimes. It’s always such a disappointment when I experience a setback again—even after four years! Some setbacks last a day, but some of them last a week or longer. When I feel good, I always hope that it will last forever, and when it doesn’t, it’s really hard to explain to the people around me that I am not feeling good again.
In the beginning, people really cared and understood that it was part of the healing process, but now, after four years, it isn’t that easy for people to understand that I still experience symptoms and that I still can’t do everything. Sometimes, people say things like, “But last week, you went to the mall with friends; why can't you go right now?” or “You drove the car last time; why can’t you do it now?” I bet people who are reading this and who have post-concussion syndrome themselves can relate to questions like this.
What Do I Say When This Happens? Explain a concussion
Not easy to explain, right? In situations like this, I always ask, “Do you feel great every day?” We are all human, and no one can feel great every day; that’s impossible. The only difference is that when I experience a bad day, I feel sick and really can’t do things, instead of just feeling sad or down like a normal person. They understand it a little bit, and my closest friends always try to understand the best they can, which I really appreciate, but it’s really hard, and I don’t blame anyone for not understanding it; it’s impossible to understand when you don’t experience it yourself.
Read my other blog: What having a concussion feels like and how to explain to others.
The Hardest while having post-concussion syndrome is planning
On some days, I can do activities that I can’t do on other days, which makes it hard to plan something. When someone asks me if I want to have dinner with friends next Friday, I really don’t know how I am going to feel that day. Maybe I will feel like I need “me time” at home, but it’s also possible that I will feel okay and will love to join. I try to not plan most activities and say that I will decide at the last minute. People who know me know that I have planned everything like this since my accident, but you can’t decide everything at the last minute. Sometimes, you need to make appointments a few weeks ahead.
Appointments Make Me Feel More Anxious
What if I don’t feel good that day? I really have to go, so I must feel good! I know thoughts like this give me more stress, but I can’t just not think these thoughts. Appointments for which I have to use my alarm clock are the worst; I always have bad sleep the night before. So again, I just try to plan everything at the last minute, and for the appointments that I need to plan, I try to plan them for the middle of the day, and only one appointment per day. This way, it gives me less stress.
I hope you can explain yourself when it comes to appointments. If you experience the same thing, please remember that you are not alone in this. It’s okay to feel like this, but don’t blame the people around you for not understanding it. Find support from others who are in the same situation and really get it.
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