My doctor told me: this is it, I have to live with my post-concussion symptoms

This is how The Concussion Community helped Lieve.

I remember it like yesterday. Lieve sent me a message on Instagram, and it broke my heart:

“I can’t do this anymore, I don’t know what to do, I am in tears, and I am about to give up. It’s like no one can help me, and after trying all kinds of concussion treatments I think this is it. That’s what my doctor told me too.”

It breaks my heart to read messages like his. Because I know how it feels to feel this lost and stuck in your concussion recovery. I have been there too.

Lieve was dealing with lots of post-concussion symptoms: fatigue, headaches, sleep problems, dizziness, neck pain, emotional, light-headed, losing friends, not being able to find a doctor who believed her, financial struggles, and so much more.

We had a lovely conversation on Instagram, and she told me she felt better after the conversation.

The next day, I noticed she’d joined The Concussion Community, and my heart skipped a beat. I was just so happy she’d taken another step forward and didn’t give up.

She followed her own journey on the platform, as we are all on different levels, and we all have different needs. Lieve started with the 16-week exercise program as this was so difficult for her because even a long walk could set her back. But she felt she didn’t have a choice, so she just started.

The other choice was giving up, and that’s not what she wanted. So, she continued and just did it. She also started a hormone course, mindset course, neck exercise course and watched serval coaching classes. After a few weeks, she sent me this message:

“I am so grateful that we crossed paths, finally a place where you can find great information from top professionals in the concussion world. I have spent hundreds at this point on doctors and treatments, but nothing helped. It helps me so much to feel empowered when there are people out there providing information and support that truly helps. Being surrounded by all these people is helping me to stay motivated. I’ve felt alone for a long time, feeling I am the only one. Thank you for this amazing community, it has helped me immensely and made such a difference. AND finally feel exercising is easier, and I was even able to do a HITT session of 45 minutes without getting symptoms! Something I couldn’t do since the accident and could only dream of. I can’t wait to go through all the other courses. Thank you again.”

Lieve joined the community a while ago, and I asked her what her biggest improvement has been since then.

She told me, “I can’t choose between them, but these are my improvements so far, and it’s like I notice a new improvement almost every month:

She was able to sleep through the night (first time since her accident!), her motivation was back, she even met another member who lived close to her, she can set boundaries way better, her mood is better, and exercise is going well (she doesn’t get a setback from it anymore and can build up slowly), which helps her with headaches and reducing anxiety.

I just feel grateful, and when I can help even one person, that’s my goal with this community. Getting messages like this reminds me of how important concussion support/help is. Check here all messages I received.

There isn’t enough information and support out there. So many people feel stuck and alone in their concussion recovery while we are with thousands, well, let’s say millions of people on this earth, experiencing the same post-concussion symptoms.

So why is there still not enough awareness about this subject?

• How is it possible governments don't believe us when we tell them we can barely survive the day?

• How is it possible they tell us we can work 40 hours a week and don’t get any financial support anymore?

• How is it possible someone gets misdiagnosed with anxiety disorder while we tell the doctor we have a concussion?

• How is it possible for so many people to suffer alone? Have suicidal thoughts, and it’s like there is almost no help and support out there?

It can make me so sad and mad to hear when doctors don’t believe people, tell you this is it, and you just have to live with it. Because that’s NOT true, and that’s something I will never accept.

I choose hope because there always is. There are always new things to try. As long as we don’t know anything about the brain, I choose to believe we are able to heal it.

In the meantime, I try to make a difference, for Lieve and for all 170 other members, for my 16k Instagram followers and for all the millions of concussion survivors who didn’t cross paths yet.

I hope this community will make the same difference as it did for Lieve. I hope you choose the side of hope because there is always hope.

Click here to find more information about The Concussion Community.

Love,

Silvie

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