Living with someone with a brain injury - 7 lessons I learned to make it easier

Are you living with someone with a brain injury, or do you have a brain injury yourself and you’re living with a partner/family? That’s not always easy.

I experienced this myself when I moved in with my boyfriend about a year ago. Sometimes, it looks like everything is going well, but we have our struggles too ;).

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Table of contents

• Did I live alone when I sustained my concussion?

• After I lived with friends, I moved to a place by myself

• I lived alone for about 4 years

• Then I met my boyfriend, and we moved in together

• When living with someone with a brain injury, communication is everything

• 7 lessons I learned that made living together easier

• And if they still don’t understand...

Did I live alone when I sustained my concussion?

No, I didn’t. When I sustained my concussion, I lived together with two friends in Amsterdam who were also my colleagues. So much fun but when you sustain a concussion, it’s definitely not easy.

On one side, it’s just hard because you’re getting overwhelmed easily, you don’t always feel like talking, they invited people to our home when I just felt like I wanted to escape the world. I just couldn’t handle it.

On the other side, I got confronted every day with the things I couldn’t do. As they were my friends and colleagues, I still heard all the stories from the Friday afternoon drinks, fun things at work, seeing them leaving for festivals and me having to stay at home, not being able to go but wanting to join so badly. Also, for them, it wasn’t easy living with someone with a brain injury.

After I lived with friends, I moved to a place by myself

In the beginning, I thought it was just temporary, and I would be back to my old self soon, but after 8 months and still not feeling any better and not knowing when I would get better, I decided to look for a place myself. I just couldn’t keep up with it anymore, I needed to move, although I didn’t want to.

So, I moved to another place, and it felt a relief. I didn’t have to keep up with all the people, noises, television and talking. It felt like I’d just been surviving the last 8 months, and now I could relax. But it made me feel more alone as I didn’t see that many people when I lived by myself.

I lived alone for about 4 years

In those 4 years, I improved, but I wasn’t healed 100%. Those 4 years were the loneliest period of my life. Not that I hadn’t any friends/family, but I just couldn’t manage it anymore.

So, my social life went from 100% to 5%. I mostly saw 1 person a week and the other days I was by myself. Resting, listening to audiobooks, diving into personal development, looking for solutions, going to health appointments and just trying to do the basic things I needed to do (groceries, cooking, cleaning).

Then I met my boyfriend, and we moved in together

I thought I was doing well enough to move in and just didn’t think about the struggles that could come with it. But I underestimated it, my me-time was gone. I had to keep up with a new social life (the one from my boyfriend) and just explaining and talking so much more than when I lived alone. Also, for him, it wasn’t easy living with someone with a brain injury as this was all new to him too.

I didn’t expect it would have that impact on me but it’s such a difference from living alone all those years and then living together. Yes, I didn’t feel alone anymore, my boyfriend was there for me, but it was also a lot to deal with. I felt more overwhelmed, especially in the beginning, when you don’t know each other that well.

When living with someone with a brain injury, communication is everything

We had many struggles, I felt overwhelmed a lot and had a hard time explaining what it feels like to have a concussion.

>> Read my blog: "What having a concussion feels like and how to explain this to others"

My boyfriend had other expectations too. It wasn’t easy for him to live with me and when I look back, I realize how lucky I am that he is still here, and he is lucky with me of course ;).

But it happened so many times that I couldn’t join when we met with friends or when someone would visit our home. This was new for him but also for me.

We tried to communicate about it the best we could, I think we wouldn’t be together now if we didn’t do that.

7 lessons I learned that made living together easier

When I look back at that first year of living together, there were 8 lessons I learned, and I hope these tips will help anyone who is struggling living together with someone who has a concussion or is dealing with it themselves.

1. Me time is everything: when you deal with a concussion, it’s so important to recharge. For me, recharging is when I am alone, not having to talk or think about anyone else’s needs. It might be hard to understand for someone who never needs me-time, but please communicate this to your partner/family.

2. Ask for help: first of all, it’s important to acknowledge what things about living together are overwhelming you. Is this you having to cook meals every day? What about asking your partner to cook more often? Or to do the groceries so you won’t get overwhelmed in the supermarket? Make a list of the things you really want to avoid and ask if your partner is okay doing them. You can do other things that are less overwhelming, maybe washing clothes?

3. Keep the house clean: A clean house means a quiet mind. I am always amazed by this effect; once the house is clean, I feel so much more relaxed. If you can’t keep up the cleaning, why not find someone who can do this for you. It’s worth every penny.

4. Communication: This is key and the reason I am still together with my boyfriend. It’s not always easy but try to be open about how you feel, what you need and ask your partner the same thing.

5. Don’t feel pushed/have patience: In the beginning, I sometimes felt pressure that I needed to feel better while I wasn’t. It’s so hard because it’s not only confronting but also causes me stress. It has also something to do with acceptance, I guess. If someone likes you for who you are, they don’t want to change it. But, of course, they just want you to feel good. But if you feel you’re getting pushed, just tell them. Or if you feel a comment is bothering you, tell them too. Without telling them, they will never know. The more you share, the better other people learn from it as well.

6. Don’t forget about yourself: This goes both ways. For the person who doesn’t have a concussion, please go and do your own thing, too, not everything has to be around this concussion. That’s okay, and it gives the other person space too. For someone with a concussion, it’s okay to put your health first and not worry about someone else first. Sometimes, you just need that, right? You are your number 1 priority.

7. Do fun things together: Try not to make everything about your concussion. I know that’s not always easy when you’re not feeling well. But I also noticed when I tried to do fun things, even when I was feeling bad, it helped me to feel better. And with fun things, I don’t mean a concert or festival, those can be small things too. Bake a cake together, go for a walk in the forest, things that you both like and can handle.

For everyone living with someone with a brain injury or having one yourself and living together with someone who doesn't, I hope my tips made it a bit easier for you.

And remember, communication is everything, if your partner doesn’t know about some thoughts you have, they will never understand or learn. Please work on it together; it’s not always easy, but if you love each other, there is always a way.

And if they still don’t understand...

but are open to understand you more or if you’re looking for more recognition yourself, then take a look at my podcast, where I share more about how it feels to have a concussion, how to deal with it, tips, stories and hope.

Maybe, starting with these two episodes below might already help ;).

Click on the photo below to go to the podcast episode on Spotify.

Prefer another channel? Click here.

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