Someone I Love Survived Sepsis: Now What?

They survived. Maybe those are the words you prayed for.

You watched someone you love become critically ill. You waited for updates. You learned medical words you never wanted to know. You may have sat beside a hospital bed wondering whether the person you loved was going to come home.

And then they did. There can be enormous relief in that. But there can also be another question waiting on the other side:

Now what?

Because the person you love survived.

And survival can change things.

Coming Home After Sepsis Doesn't Always Mean Everything Goes Back to Normal

When someone survives sepsis or critical illness, everyone around them may desperately want life to feel normal again.

The crisis is over.

They're home.

They're alive.

But recovery from sepsis can continue long after someone leaves the hospital.

The survivor may still be recovering physically, cognitively and emotionally. They may be exhausted in ways that are difficult to understand. They may forget things or struggle to find words and concentrate. They may become overwhelmed more easily or feel afraid of getting sick again.

They may experience pain, weakness, changes in sleep or difficulty returning to things they once did without thinking.

They may look completely fine.

And still not feel fine.

Not every sepsis survivor experiences the same challenges, and not everything that happens afterward is necessarily caused by sepsis. New, worsening, persistent or concerning symptoms should be discussed with their healthcare provider.

But understanding that recovery can continue after discharge can change the way we support someone through it.

Your Loved One May Not Know How to Explain What They're Feeling

This is important.

Your survivor may not have the words to tell you what they need.

They may not understand what's happening themselves.

Imagine knowing you used to be able to do something and suddenly realizing that doing it now takes everything you've got. Imagine wanting to participate but not having the energy. Wanting to remember but not being able to find the thought. Wanting everyone to stop worrying about you while simultaneously wishing someone understood how hard this still is.

Sometimes survivors are learning their bodies all over again.

You don't have to understand everything they're experiencing to believe that they're experiencing it.

How Can I Support Someone After Sepsis?

When we love someone, we want to make things better.

Sometimes there is something practical you can do.

Drive them to an appointment. Help with a meal. Take something off their plate. Sit beside them in the exam room. Write down the questions they don't want to forget. Learn about what they're experiencing.

But support doesn't always mean fixing it. Sometimes the most important thing you can offer isn't a solution.

It's:

I believe you.
I'm listening.
You don't have to convince me that this is hard.
What would help today?

And sometimes the answer might be:

I don't know. That's okay too.

Ask a Different Question

The way we ask questions can change the way someone feels supported during recovery.

Instead of: "Why can't you just...?"

Try: "What would make this easier?"

Instead of assuming they don't want to participate, ask whether there's a version of the activity they can manage.
Instead of assuming they're back to normal because they had one good day, remember that their capacity can change.
And instead of immediately trying to solve the problem, sometimes ask:

"Do you want help figuring this out, or do you just need me to listen?"

That question can be a gift.

Caregivers Need Support After Sepsis Too

There is another person in this story who can get overlooked.

You.

Loving someone through sepsis or another medical crisis can be frightening, exhausting and traumatic. You may have spent so much time focusing on keeping someone else alive that you haven't had space to process what happened to you.

You may be grateful they're alive and still be tired.

You may love them deeply and still be frustrated.

You may miss pieces of the life you had before too.

You may need support that has absolutely nothing to do with how well you're caring for the survivor.

Their survival happened to your life too.

Your experience doesn't compete with theirs.

There is room for both.

You're Learning How to Navigate Life After Sepsis Too.

The survivor may be learning a body and life they weren't given instructions for.

And in many ways, so are you.

You won't always know the right thing to say.

You won't always know whether to help, encourage, give space, ask questions or simply sit beside them.

You aren't expected to have all the answers.

Stay curious.

Keep communicating.

Ask what they need instead of assuming.

Tell them what you need too.

And remember that you're both allowed to learn as you go.

Because surviving sepsis doesn't only leave a survivor asking:

Now what?

Sometimes the people who love them are standing right beside them asking the exact same thing.

Maybe neither of you needs all the answers today. Maybe you just need somewhere to start.

Surviving is only the beginning.

— Jackie