Grieving the Freedom to Just Be: The Invisible Weight of HAE and MS

When we think about grief, we often associate it with losing someone we love, the end of a relationship, or a life-altering event that divides everything into a before and an after. These are the losses we recognize, the ones we understand deserve to be mourned.

The unseen losses of HAE and MS

But I’ve come to realize that some of the hardest losses to grieve are the ones nobody else would even think to acknowledge.

Living with hereditary angioedema (HAE), alongside multiple sclerosis (MS), has changed my life in countless ways. There are the obvious losses, like plans that have fallen apart, experiences I’ve missed, and adjustments I’ve had to make. But when I think about what I miss most, it isn’t necessarily any of those things.

It’s the freedom to simply be.

To exist in my own body without constantly questioning it. To experience an ordinary moment without immediately considering everything that could go wrong.

When ordinary sensations become complicated

I can’t experience something as simple as a stomach cramp or an itchy throat without wondering whether it’s the beginning of an HAE attack.

Is this an attack? Do I need my rescue medication? What happens if I wait too long?

These are questions I find myself navigating without always having the reassurance of a clear answer.

I’ve reached a point where I often administer my prescribed rescue medication before I can confirm whether HAE is responsible for what I’m experiencing. The possibility of treating something that turns out not to be an attack feels far less frightening than the possibility of delaying treatment when one is beginning.

And that concern comes from experience.

My HAE and MS have a complicated relationship. When I experience an HAE attack, it often triggers my MS symptoms, and I can’t always predict how significantly I’ll be affected.

Sometimes it’s mild brain fog. Other times, vision loss, difficulty swallowing, an inability to form sentences, or losing the ability to walk.

What might begin as an ordinary sensation can quickly become a reminder of everything that could potentially follow.

Even when the symptom turns out to be unrelated to HAE, I’ve already considered the possibilities and weighed the consequences. The attack doesn’t have to happen for the emotional toll to be real.

The exhaustion of never being completely off duty

There’s a particular kind of exhaustion that comes from constantly monitoring your own body, even when nothing appears to be wrong.

It’s not necessarily the exhaustion that follows an attack. It’s the mental responsibility of always having to notice, assess, question, and prepare.

I’ve spent years learning my conditions, recognizing warning signs, and understanding how to respond when something doesn’t feel right. That knowledge is important, but sometimes I wish I didn’t have to rely on it so often.

I wish a stomachache could simply mean something I ate didn’t agree with me. I wish an itchy throat could just be allergies.

Instead, even the smallest sensation can require a decision with potentially significant consequences.

That’s something I think people don’t always understand about living with HAE. Its impact isn’t limited to the attacks themselves. It also exists in the moments between them, in the constant awareness of what might happen next.

Grieving something others may never notice

How do you explain that you’re grieving the ability to experience a stomach cramp without worrying about what it might become?

It may sound insignificant compared with other losses, but grief doesn’t require comparison or justification.

I can appreciate the treatment options available to me while wishing I didn’t have to consider rescue medication every time something feels unusual. I can be happy, fulfilled, surrounded by people I love, and still miss the freedom I’ve lost.

Sometimes I’m having a wonderful day, laughing with my children or enjoying time with friends, and one unexpected sensation brings that uncertainty back.

Nothing terrible has to happen. The reminder alone can be enough.

Making room for the grief we rarely acknowledge

I don’t spend every moment afraid of my body. I have a life filled with laughter, relationships, purpose, and experiences that extend far beyond my diagnoses.

But beneath those moments is an awareness I can’t completely turn off.

I’m not grieving because I’ve given up. I’m grieving because there was once a version of my life where I didn’t have to think this way, and I miss her sometimes.

I miss the freedom of assuming that an ordinary sensation was probably just an ordinary sensation.

I don’t wish I were less prepared. I wish I didn’t have to be.

Nobody sends flowers for that kind of loss. There isn’t a defining moment when the world acknowledges that something meaningful has changed. Life continues, and we learn to move forward with it.

But I believe these quieter losses deserve recognition, too.

Because sometimes grief isn’t about something terrible that happened. Sometimes it’s about the freedom we’ve lost trying to prevent something terrible from happening.

And sometimes, more than anything, I simply miss the freedom to be.