Updated: Jul 7
Experiencing a concussion is like trying to explain color to a person who has been blind since birth. From the beginning, I had a hard time explaining to others what it feels like to have a concussion. I didn’t even know what was going on myself, so how could I describe this to others? Well,… most of the time I tried but I think really understanding how you feel is impossible, only other people in the same situation will have the understanding of what you’re going through.
Even if you have all the medical knowledge about how it should feel to have a concussion, you still can’t imagine how it is to actually have it. It’s a daily struggle, mentally and physically. This is for sure the hardest challenge and struggle I ever had in my life, no doubt about that.
How does having a concussion feel for me personally?
Where do I start? In the beginning, let’s say the first year, I was confused. I didn’t know what was going on with me. My body reacted differently to all kinds of situations, I stressed out over the little things and mentally it was hell. I had no certainty at all. When is this going to end? Is this even going to end? Will this pain be there for the rest of my life? What can I do to feel better? Am I lacking some crucial support? Am I doing things that will mess up my recovery? Where can I go for help? Am I the only one experiencing those symptoms? Why is the world just continuing and I am on pause?
So many questions and almost no answers anywhere. This was resulting in feeling down, frustrated and hopeless. Both physically and mentally I felt lost, like I was in a negative spiral and unable to escape it and no one who could tell me where the exit was. I was just waiting for all this to end, not knowing anything and not talking about it that much. After a year I couldn’t hide and wait anymore. It felt like I had to explain to friends/family/doctors how it felt in order to get more understanding and to find the help I needed. Because what if this “waiting” phase never ends? The not understanding part and the total feeling of loneliness during this time was tearing me apart. I needed to find the exit to this downward spiral.
How can I explain my symptoms to others?
A lot of people asked me what I felt because of course, I looked normal, aside from my tired eyes and restless energy. Here are some examples of how I explain my symptoms to others:
Nauseousness: It feels like getting nauseous from a boat trip, but then ALL the time.
Eyes (focus problem): It constantly feels like looking through a camera and noticing the moment it’s adjusting to the object to make it sharp.
Eyes (blurry vision): It’s like opening my eyes underwater. This is so hard to describe!
Ringing ears: Do you remember going to a place with loud music and coming home afterwards and getting a “noise” in your ear? I had this feeling all day or for hours.
Exhaustion: It feels like a bad hangover, you want to do things but you don’t have the energy for it. You just want to lay down on your couch but then with the understanding that this is not just for a day, not knowing when it will end, sometimes combined with the worst flu. It’s also comparable with a bad jet lag you have to recover from. Read my other blog about how I explain my energy to others: “The Spoon Theory”.
Fatigue: It feels like when someone wakes you up in the middle of the night at 4 am. You are disoriented but also tired all day long. You think you can go to bed early that evening but what if I wake you again at 4 am and the day after and after and so on… I guess you won’t have a clear feeling in your mind.
Sound sensitivity: What if someone is not just talking but screaming in your ears and at the same time loud music is going on and this is happening ALL the time. It feels like the volume button from all sounds is turned up to absolute max. I bet you’re thinking about covering your ears or thinking about earplugs.
Light sensitivity: Have you ever looked into the flash of a camera? That’s not a nice feeling, right? What if you’re sitting in a darker room with some candles and someone is putting a flashlight on you in an unexpected moment? Do you get the feeling that you want to cover your eyes or squeeze them? It’s also comparable with the moment when you went clubbing until the early morning and set your first step outside the dark club into the daylight.
Feeling overwhelmed by tasks: It’s as if you have to do a task for your work, your kids scream in the background, your phone and the doorbell are ringing and your friend is asking you questions, all at the same time. Or what if you made a day plan you’re not even able to manage within that time frame? Does it give you a stressed feeling? Often I get this feeling even with very simple tasks.
Feeling overwhelmed in a busy place: It feels like you are at a festival and it’s too busy, the music is too loud and it’s getting busier and busier and there is no escape anymore to get out of the crowd and you’re getting crushed. The adrenaline is running, your breath is shortened and you’re feeling anxious. I often feel like that in a normal situation with just a few more stimuli from outside.
Memory problems: It’s like having a hangover without enjoying the party. You drank too much and can’t remember the whole evening.
Pressure on the head: This always feels like there is an elastic band around my head.
You don’t really get it unless you experienced it yourself.
A lot of people try to understand how I feel and that’s enough for me. I don’t think anyone really gets it unless they too have had the experience. It’s an inside struggle and it’s changing all the time. From the outside looking in, you can never understand how it really feels and from the inside looking out, you can never explain it.
Connecting with others in the same situation helped me to feel less lonely and for the first time, I experienced that I don’t have to prove or explain my symptoms. Before I had this, I felt lonely in long-term concussion recovery. Now I hear stories every day from people on the same path and I am really grateful for that. Remember, you are never alone.