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What is it like to have post-concussion syndrome?

Updated: Feb 9

Listen to this blog:

This is a question I often get from caregivers helping their loved ones who sustained a concussion, my friends and family or doctors who were mostly unable to help. It’s so hard to answer the question: “What is it like to have post-concussion syndrome?”

But in this blog, I will do my best to explain how it feels, mentally and physically.

What is it like to have post-concussion syndrome?

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I only focused on the physical part

In the first year, I only focused on the physical part of having a concussion. I thought it was only about that and getting better. But when you are sick for a longer period of time, it does a lot with your emotions.

You have to deal with questions like:

  • Will I ever get better?

  • What can I do to move forward?

  • Am I doing something wrong that’s holding back my recovery?

  • How do I manage my energy?

  • What is happening? Why do I feel like this? I don’t feel normal.

I didn’t see the mental impact at first.

Right now, after 5 years I see the emotional part was way harder than the physical part. I think you are just in that bubble of surviving that you don’t even realize this at first.

You are searching all the time for options to get better and how to handle things like work, your social life, relationships and even the normal daily tasks like grocery shopping and preparing meals.

Because everything is so confusing, you don’t even have time to realize what is happening. I remember I felt so confused, I tried to act normal because I couldn’t explain what was going on with me.

I focused on treatments to get better, I went to my doctor many times, changed my diet, just everything I could do to feel improvements in my symptoms.

People asked how I was feeling…

Most of the time, I didn’t know how to answer this question. When I answered this question by saying: “I am not feeling well,” they started to ask questions like, but what do you feel? Well, I feel overwhelmed, nauseous, dizzy…I just mentioned all my symptoms.

This always ended in a short silence followed by, that’s a lot, just take some rest, try not to worry that much, and I hope you feel better soon.

Of course, they didn’t know what to say. I didn’t know what was going on, my doctors didn’t know, so how could they know? They just tried to help me, but I knew deep inside, just not worrying and taking rest wasn’t something that would help me.

I felt restless all the time…

Not only physically because of the pressure in my chest, but my fight-flight system was out of balance and also in my head.

I worried a lot about how to get better, I had financial stress because I couldn’t work, I had stress about my social life, I just couldn’t catch up with everyone at the same speed as I was used to. I had stress about doing my daily tasks, doing groceries, cleaning my house, preparing meals.

Things that I could do with my eyes closed before the accident were almost impossible to handle after the accident. I could not think clearly, it was like the thinking patterns in my head were blocked. I got stressed because of the smallest task I needed to do.

I remembered it was even hard to make a phone call to make an appointment. This was something I always did between a few tasks at work, with a lot of background noise… Now it was my main task of the day.

If I knew I had to make a phone call the next day, I would already start stressing about it a few days before. What was happening?! This was so not me!

I lost all control over my body and mind

I think the hardest part was I didn’t have any control over my body and my mind. At the most random moments, my body could turn into fight-flight mode. I could have an anxiety attack, I could feel pressure on my chest, or I could burst out into tears.

Because it felt like I lost control, the safest way for me was to stay at home because I hated it when something like the above happened in public. I’d often cry out of nowhere because I felt overwhelmed by the noises and people outside.

People asked me what was wrong, and I couldn’t answer that question. It wasn’t that I felt sad (of course, this situation didn’t make me happy), but it was because I needed to relieve the stress in my body.

So, what is it like to have post-concussion syndrome?

To answer this main question and describe it in a few sentences.

For me, it feels like an uncertain and confusing journey, where you don’t have control over your body, and you don’t know what you need to do to move forward. It feels like you’re your own doctor, and most people/doctors don’t understand what you’re going through.

It’s a mental and physical struggle, and it feels like the four pillars in your life collapsed: physical, mental, social and financial. I wrote more about this in another post: Click here.

Little by little, you figure out how to rebuild your life, how to manage everything and learn what serves you. The thing you need most is patience; it can be such a slow process, which makes it frustrating.

In the end, when you’re doing better, and you look back, you realize you learned a lot. Things did change, and not only in a negative way. You didn’t notice this when you were right in the middle of this rollercoaster, but you are more grateful and aware of it, as this journey gave you perspective.

Don’t see any positive things yet?

I totally understand when you’re reading these last sentences that you may have thoughts like: “Maybe that’s the case for you, but I only see negative things as a result of the concussion,” or “I don’t see any way out, I’ve already tried everything.”

I know how it feels to lose hope, I have been there too. When people told me things would be okay in the end, I didn’t believe them and stopped listening. But I want you to know it is true, even if you’re not feeling it right now.

“If it’s not okay, it’s not the end.” - John Lennon.

I hope caregivers, family and friends do understand a bit better reading my answer to the question: what is it like to have post-concussion syndrome?

Again, it’s so hard to describe, and I think you only get it when you have a concussion/TBI yourself. But reading this is a sign you’re trying everything you can to help your loved ones.

Give yourself credits as well.

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what is it like to have post concussion syndrome

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