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In the beginning of my concussion recovery, I never thought that something could last this long. I remember my doctor told me that it could take weeks. Now I wish that I could only think in weeks instead of years.
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Not all comments are helpful during your concussion recovery…
People around me made lots of comments, they tried to help me, but not all comments were helpful. I always felt pressure from people around me to get better sooner than I did. Especially from work, I often get the question: when are you coming back? Or the worst comment: aren’t you better yet?
When someone asked that question, I didn’t know how to respond. It made me feel sad because getting better was the only thing I wanted so badly. If someone says something like that, it feels like confirmation that things are not going well.
It was also hard not to know the answer to that question. I was looking for answers all the time during my first two years, and being confronted by someone else wasn’t helping at all.
I know they didn’t mean it like that
People mostly don’t know how to respond when you tell them that you’re still not feeling well. In the first weeks, this wasn’t a big problem; people seemed to understand how I felt and that healing could take some time. But after the first months, when people asked how I was doing, and I told them that I hadn’t improved, some people said: You still aren’t better yet?
I wasn't, I didn’t even tell them that I felt worse than the last time they asked. I couldn’t explain how it felt to feel so lost, frustrated and disappointed at the same time. Disappointed because I tried to do everything to get better, but nothing was helping. When some then asked that question, it felt like an extra kick in the ass.
People don’t know that you are struggling with concussion symptoms every day.
Some people only saw me for a short period of time, so they didn’t notice how I was struggling. They didn’t see me when I was at home, crawling and crying in my bed. They didn’t see how exhausted I was when I came home from a walk with a friend. When I was outside my house, I was mostly in my best mood. At home, I had to recharge, I cried a lot and felt so lost and frustrated.
I avoided people because of the confrontation
I truly wished that someone didn’t ask me some questions. I didn’t want to be confronted with it.
I know people said things because they thought it would help me. But most of the time, it was the other way around, it didn’t help me at all. It made me feel sad, more lost, frustrated and alone. So, I started to avoid some social activities.
There were more questions that I tried to avoid:
What kind of work are you doing? I couldn’t work, but sometimes I just didn’t want to explain this over and over to a “stranger” or to someone who wasn’t close to me.
My employer: When do you think you will be back at the office? I couldn’t even bike to the office because of all the busy streets with trams, other bikes, so many people (I lived in Amsterdam, and the office was in the center). The thought of going there and actually working behind my screen between a lot of people freaked me out.
Why aren’t you dating or why don’t you have a boyfriend? I didn’t have any energy to start dating. It was almost impossible to go to a restaurant (it felt like surviving), meeting new people at a busy place was just no option at the beginning of my concussion recovery. When someone asked that question, I always said: I just want to focus on myself, and I believe the right person will come my way when it’s time. Deep inside, I panicked and felt sad; if I was like this for the rest of my life, I would never be able to date again. Would I always be alone? They had no idea that I wanted nothing more than having a relationship and living a normal life.
Why are you canceling again? I had to cancel so many activities, and people didn’t understand why. Some said: but it will help you to focus on something different than your concussion symptoms. They had no idea that when you’re having a bad day, when something is not possible, it’s not a matter of focusing on something else. It’s the same as you say to someone with a broken leg; come on, just walk on it, focus on something different, and you will forget about it.
Don’t you think it’s just because you’re getting older? This is a classic question, right? When someone says this, it’s definitely not helping, it makes me feel so misunderstood. Yes, we are getting older, but this has nothing to do with that. Deep inside, I wished it was just getting older.
Do you want to come over and just watch some television to relax? It seems like everyone around me doesn't get it that watching television isn’t something relaxing for me. It makes my symptoms worse, and I have a hard time watching it. Especially in the beginning…right now, I can watch television for 45 minutes (but still get symptoms). It’s not relaxing for me.
What do you need to get rid of your concussion symptoms? I wish I knew what would help me. People try to help, and I appreciate that a lot. But I felt so lost, tried so many things, and almost nothing seemed to help me. When people asked me this question, I felt stuck, I had no answer and wasn’t sure if I would ever answer this question.
These are the questions I didn’t like at all during my concussion recovery. It took me a lot of energy, it made me feel more frustrated and hopeless in my journey. What about you? Do you feel the same? What did people ask you during your journey?
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