Top 5 Things People Don’t Understand About AVMs

When I first heard the words arteriovenous malformation, I didn’t even know what it meant.

It sounded clinical. Distant. Almost unreal.

But what I didn’t know then is that those words were about to change my entire life.

AVMs are rare. They’re invisible. And unless you’ve lived through one or loved someone who has, it’s almost impossible to fully understand what they take from you and what they force you to become.

Medically, AVMs affect less than 1% of the population, and the average risk of rupture is about 1% to 3% per year. That number might sound small, but when you’re living with it, it doesn’t feel small at all.

So this isn’t just information.

This is what living through it actually feels like.

1. You Can Have One Your Entire Life and Never Know

One of the most unsettling things about AVMs is how silent they can be.

Many people have no symptoms at all until a rupture happens.

No pain. No warning. No reason to think anything is different.

And then one day, everything changes.

For a lot of people, the first sign of an AVM is a hemorrhage in the brain.

The moment your life splits into before and after.

There is no time to prepare for that kind of shift. It just happens.

2. It’s Not Just a Medical Event

People often hear the word stroke and assume it is something you recover from and move on.

But when it is caused by an AVM, it is so much more complex.

AVM ruptures can lead to hemorrhagic strokes, brain injury, and long-term neurological effects depending on where the bleed occurs.

It becomes a life interruption. There are hospital stays, procedures, uncertainty, and fear that stays long after the initial event.

Even when things look “better” on the outside, the experience does not just disappear.

It changes how you think, how you feel, and how you move through the world.

You do not simply go back to who you were before.

3. Recovery Is Not Linear

Recovery is one of the most misunderstood parts of this journey.

From the outside, people expect progress to be steady and obvious. But in reality, it is unpredictable.

Stroke and brain injury recovery can take months or years, and it could even take the rest of your life. I know mine will.

Some days you feel strong and capable. Other days feel heavy, frustrating, and exhausting. A lot of the hardest parts are invisible.

Mental fatigue. Emotional ups and downs. Moments where your body does not respond the way you want it to.

It can feel isolating trying to explain something that people cannot see.

4. You Grieve the Version of Yourself You Used to Be

This is something that does not get talked about enough.

After an AVM rupture or stroke, there is a real sense of loss.

You grieve the person you were before everything changed.

The version of you that moved through life without thinking about your body. The version of you that felt safe and certain.

And that grief is complicated.

Because at the same time, you feel grateful to be alive.

Both of those feelings can exist together.

You can be grateful and still be grieving.

5. Strength Looks Different Than People Think

People will often tell you that you are strong.

But strength after something like this does not always feel powerful.

It looks like showing up on the hard days. Trying again when things feel frustrating. Continuing forward even when life feels unfamiliar.

It is quiet. It is messy. And most of the time, it goes unseen.

But it is there.

And over time, it becomes part of who you are.

Final Thoughts

Living with an AVM or surviving one changes you in ways that are hard to explain.

It is not just physical. It is emotional, mental, and deeply personal.

There are hard days, and there are moments of doubt.

• 

• 

• 

But there is also growth.

There is rebuilding.

There is a version of life that still exists, even if it looks different than you imagined.

If you are going through this, you are not alone.

And even on the days it does not feel like it, you are still moving forward.