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I look fine, but from the inside, I am not fine. How to deal with this while having a tbi / pcs

Updated: Mar 7

An invisible injury isn’t something that’s easy to deal with. All people around you don’t understand how you feel and often they don’t realize you’re not feeling well. When you have a visible injury, people will notice right away what’s wrong but having a TBI / PCS is something people don’t notice when you don’t talk about it.

tbi pcs


It was different in the beginning

When I sustained my concussion people really cared in the beginning. They visited me often at my home, my work sent me flowers and cards and people texted me on a daily/weekly basis. It felt like everyone really cared and I didn’t have to explain that I wasn’t feeling well, people just knew it.


There was one other person at my work who got a burnout almost at the same time I sustained my concussion. I remembered that people always compared my symptoms with the one from the burnout. I totally understood it but it didn’t help me when people told me that I maybe overdid in my work and that was the reason I felt like this.


It’s so hard to explain that my symptoms came from my whiplash/concussion and not because I took too much on my plate. I had explained this all the time and after a while, I stopped doing this, I knew better and it cost me a lot of energy. I think all people with a TBI / PCS can relate to that.


You look fine..

After a while people didn’t send me that many text messages anymore, I didn’t get flowers or cards from work. My work asked me when I would be back, people made more comments like: ‘oh you’re still having symptoms? But you look great’. Because I looked fine people, always assumed that I would feel great too.


Sometimes I went to social gatherings because I pushed myself and didn’t want to admit that I didn’t feel right. I looked normal, people treated me normal but to be honest it made me even feel more alone. I missed my old me, all people around me were just the same but I didn’t feel the same anymore. I couldn’t enjoy all social gatherings because I was trying to act as normal as I could.


Every time I was so happy to go home, back to my safe place. This was so not me! I always loved to stay until the end, hated it when people left early at a party and now I became the one who wanted to leave as the first person. In my mind, I didn’t want to leave (the old me) but my head/body just couldn’t handle it anymore. I had to recover for days.


People often forget that you’re having a TBI / PCS

When you already have your symptoms for such a long time people just forget sometimes that you can’t do the same things as before. Most of the time they see me at my good days so they assume I am doing better or that I am healed. When I don’t talk about my concussion, it feels like they forget that I am struggling every day with it.

I often don’t want to talk about it all the time but when I don’t I always feel like I am all alone with my struggles. But I can explain it many times, they still don’t get it or are aware of it all the time.


Read my other blog: People without a head injury say they feel the same, it's not the same. 11 comments that bothered me.


A friend asked me to join a festival?!

Did they really ask you that? Yes they really did. I always went to festivals before my accident but as we all know this is way too much to handle right now. When my friend asked me this, I felt so misunderstood and really didn’t know how to react to this question. I felt like I had to defend myself but at the same time, I liked it that they saw me as a “normal” person.


I don’t want them to see me as a person with a TBI or dealing with PCS but I also don’t want them to forget about my symptoms. Sometimes it feels like there is no right way and that makes it really hard. It’s also hard for them because when they don’t ask about my symptoms I always feel like I have to remind them, let them be aware that I am struggling.


Sometimes I try to act normal when I don’t feel like that

I often choose the easiest way and I just act as if I am doing fine. It’s such a simple question to ask someone: ‘How are you doing?’ But for someone with a TBI / PCS this question isn’t the easiest one. In their eyes, you look okay and maybe you’re smiling too. What are you going to tell them, “yes, I am doing okay”, or are you going, to be honest, and let them know that you’re not doing okay? I just don’t want to complain or come out as a negative person so I choose to not be honest all the time about it.


I am glad that they don’t see me as (temporary) disabled and I always try to think about that. I try to be positive about the situation and think that things could be worse as they are now. I improved a lot during my years of recovery and I am really grateful for that. I try to focus on what I have in life and not on what I don’t have.


When the people around me don’t really get it, I am really grateful that there are people (online) that I can talk to, they do really get it without explaining anything. That support is so needed and it’s helping me a lot to feel not alone and to feel that it’s normal to feel like this. I am aware that years ago there were no online support groups, but now there are and that’s amazing.


During my concussion journey, I felt so lost and lonely.

I was feeling restless all the time. Doctors weren’t able to help me so I was feeling stuck. 🤦🏽‍♀️


My setbacks were the worst things ever and I didn’t know how to deal with them or prevent them. My days felt more like surviving than enjoying and I was always looking for a balance between rest and doing things.


Thankfully, I'm feeling much better now with the help of professionals who GET it and because of all tips and support from others in the same situation.

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- to reduce my fatigue & brain fog

- to have more energy, no napping anymore!

- to improve my sleep, waking up is easier

- to feel less stressed, it's not slowing down my recovery anymore 

- to exercise again (finally!)
- to have a better mood, goodbye negative spiral! 

 

7 things that have helped me:

 

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