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If it’s not enough to have a concussion or TBI on top of that comes that some doctors don’t believe your symptoms because there is no proof for it. Every time this happened, I felt even more alone and lost and I panicked about it. What if they couldn’t fix my problems? How would I be able to do that myself?
Table of Contents
My visits to my own doctor
The first visits to my doctor were confusing. I didn’t hit my head so my doctor only mentioned that I had a whiplash. During the first year, no doctor ever mentioned the word concussion. So I started to focus on everything related to whiplash.
I went to my doctor many times and I can remember the last time I saw him, he mentioned that I had burn out symptoms and an anxiety disorder. He sent me to a psychologist and that was it.
How I responded to my own doctor
I told him that I believe that talking about the emotional part is helpful but that I didn’t want to talk about it yet, it felt too early. I told him that I just wanted to have a good post concussion syndrome treatment, not just treatment for my emotions. And that when my symptoms would go away I don’t need that psychologist anymore. I said that that wasn’t the right order to treat my concussion symptoms.
I told him if he wasn’t able to help me, that I would start looking myself for therapies and didn’t want to accept his recommendation to go to a psychologist that time. We are talking now about the first 6 months after my accident. I didn’t see how he/she would be able to take away my symptoms. My doctor told me that I needed to accept things and work on myself, yes I did, but not in this way. I felt so misunderstood and went home with mixed feelings. It felt like I was all by myself and wished there was a magic tool that could measure my symptoms or a magic post concussion syndrome treatment that would take away all my symptoms.
I never saw my doctor again.
What my physiotherapist said to me
I went to a physiotherapist to do exercises for my neck. My neck was hurting and all these exercises didn’t do me any good. I thought it was just a matter of time so I continued going there once a week for 8 weeks.
I felt worse and worse. After those 8 weeks he told me, “you are more flexible so that’s good! You improved a lot and the muscles in your neck are functioning better now.” I couldn’t believe it, I felt worse and he told me that I was functioning better! How?!
I told him that I didn’t feel better but even worse and he told me again, “it takes time and there is nothing more we can work on, there is no special post concussion syndrome treatment anymore.” To hear that there was nothing more he could do while I was feeling worse wasn’t easy at all. I was mad and sad at the same time and told him that he should not add “treating concussion symptoms, whiplash and tbi” to his website. (I told him this by sending him an email later on when I found out I had a concussion). Guess what? He never responded to my email and I became my own doctor again.
What my neurofeedback therapist said - My next post concussion syndrome treatment
After doing physio for 8 weeks, which didn’t make a difference I heard about neurofeedback and wanted to try this. I started with a QEEG scan and he told me that he saw imbalances and that we are able to fix this. I was excited because finally someone said that he could help me with my symptoms.
At first I went there for 10 sessions, 2 every week, but didn’t feel any difference. I started to lose hope but he told me that it can take up to 15 sessions to feel something. So I continued. After 15 sessions everything was exactly the same but he said that my next scan was better than my other one. Why didn’t I feel any difference then?
It will take time he said..
He told me again that it can take time. This felt like the same story my physiotherapist told me but I didn’t want to give up that soon so I continued. After way more sessions and money spent I had to give up and he agreed with me. He just suggested that I start working again, which would help me because then I didn’t feel sad being at home all the time anymore, it could do me good was what he said. I didn’t believe what I had just heard. I barely managed to come to his sessions for 2 times a week, how could I go back to work? What was he thinking?
I felt so misunderstood again and said that I was not able to go back, my symptoms needed to improve before I could be trying to go back. He wished me all the best and that was that. I stepped outside his office and was alone with my symptoms again.
Because in that moment I didn’t know what to say, I sent him an email after (my writing is better than talking) where I told him that I didn’t like his approach at the end because it felt like he didn’t believe me.
After sending that email I decided not to spend my energy on things like that anymore. It made me sad.
Things that can help when a doctor doesn’t believe / understand your concussion symptoms
Make a list of your symptoms and show them to your doctor. It helps to not forget something because in the moment things are always going different as planned.
If they want to send you to a psychologist. Let them know you want to treat your symptoms first. Don’t get me wrong, I do believe a psychologist can help for the emotional part (which is a big part of concussion recovery) but if you want to focus on improving your symptoms make sure they will get that.
Make notes during your appointment or ask if it’s okay to record the conversation so you will be sure that by the end you will remember everything he/she said. This makes it possible to take a look at it when you’re home in your own safe space.
If you feel your primary care doctor doesn't take your symptoms seriously. Ask for a referral to a specialist that you think can help you.
If a doctor doesn’t believe you or if you notice that he is not really trying to help you, I always decided to find another doctor. It’s very important to have help from specialists who believe you.
You are not alone - We believe you
I want you to know that you’re not alone in this and I bet this happened to way more people with concussion symptoms. I really hope there will be more awareness about this in the future. So we don’t have to prove our symptoms all the time. It’s hard enough to deal with them.
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Ashton Deroy from the concussion Community on Facebook here. I found writing things down helped a lot during my Concussion recovery... Except the part where I was in so much pain I wanted to self harm!