Survivor Guilt: When Being Alive Feels Like Something to Apologise For

What a weekend.

On Friday, we won the Wellbeing Charity Award at The Platinum Awards – for the second year running.

We won. Again.

The Platinum Awards judges:


On Saturday, we went to the next village and watched go-karts in glorious sunshine.


On Sunday, we celebrated our eldest daughter’s first wedding anniversary.


Three days. Three reasons to smile.

Also on Sunday, I cried.

A lot.

Because Sunday should also have been my little brother’s 56th birthday.

But it wasn’t.

He died last year aged just 54 from stage 4 bowel cancer.

And here’s the bit I still struggle to say out loud:

I feel guilty that I’m still here.


Why him?

His partner is suffering.

His children are suffering.

His grandchildren are growing up without him.

And his older sister?

She is still here.

Fit. Well. Nine years on from her own cancer diagnosis.

In 2017, I had stage 3 HER2+ breast cancer.

I was incredibly ill.

I underwent chemotherapy, surgery, radiotherapy and hormone therapy. I got through it, one day at a time.

And I survived.

He didn’t.

Why?

I have no satisfactory answer to that question.

And grief has a horrible way of making you believe there should be one.


I’ve felt this guilt before

This weekend isn’t my first encounter with survivor guilt.

Back in 2019, when I was beginning to emerge from cancer treatment, I wrote an article called The Guilt of Healing.

I remember writing it because I couldn’t understand what was happening inside my own head.

I’d survived something that kills people.

So why wasn’t I simply grateful?

Why did being well feel well… uncomfortable?

I wrote:

A strange concept, I know, but it is how I feel. Last year I had an aggressive, mastectomy-bound Grade 3 breast cancer. Today I’m healed. And I feel guilty about that. Guilty that I’m well and others aren’t.”

I wondered whether it was just me.

It wasn’t.


The strange guilt of getting better

We tend to imagine surviving cancer as a neat story.

Diagnosis.

Treatment.

Recovery.

The end.

Except it isn’t.

There is the physical recovery, certainly.

But there is also the psychological aftermath; the strange territory where you are simultaneously enormously grateful to be alive and painfully aware that not everyone else gets to be.

You look around.

Someone else didn’t make it.

Someone else lost a body part.

Someone else’s mother died.

Someone else’s child won’t grow up.

Someone else’s husband or wife isn’t coming home.

And you’re still standing.

Sometimes that feels less like victory and more like an accusation.

Why me?

Why did I get to survive?


In 2019, I wrote this:

So many times I’ve wanted to shout out to the world ‘I’m healed!’ ‘Whatever I did worked!’ but I can’t.”

Because even celebrating survival can feel insensitive when someone else is still suffering.

I didn’t want my good news to become someone else’s pain.

I didn’t want to be the woman shouting I MADE IT THROUGH! while someone else was wondering why they hadn’t.

But eventually I realised something.

My survival wasn’t taking anything away from anybody else.

There isn’t a quota of healing.

There isn’t a finite supply.

My getting better didn’t cause someone else to get worse.

And staying quiet about survival doesn’t save anyone either.


So I decided to use it

In that 2019 article, I wrote:

“I need to banish those guilt gremlins and get on with playing my part.”

So that’s what I did.

In 2020, I launched a charity: Double-zero.org.

I decided that if I had learned things through my own suffering that might help someone else, then perhaps my suffering didn’t have to be entirely wasted.

If I could help someone else navigate cancer with a little more knowledge, a little more hope, a little more agency…

Then I would.

Six years later, here we are.

Our free resource has now helped thousands and thousands of people.

We’ve won three awards and we’re up for another in London on 25 September.

And on Friday, with another award to our name, I was reminded that sometimes the thing you build from your darkest days can become something incredibly light for someone else.

Maybe that’s what survivor guilt is trying to tell us.

Not you shouldn’t be here.

But:

Now that you are here, what are you going to do with it?


My brother should be here

And yet…

Knowing all of that doesn’t stop me missing him.

It doesn’t stop me crying.

It doesn’t stop his birthday hurting.

This week is particularly difficult because it’s also my birthday.

My little brother and I always shared our birthday week.

We’d call one another.

Laugh about how we could barely hear each other because the music at our “parties” was so loud.

(There usually wasn’t a party. That was the joke.)

We’d wish each other happy birthday.

Now I can’t call him. And I’ll never be able to call him again.

And there is no amount of helping other people that changes that.

But perhaps there is a way to carry him forward.


The final part of grief?

People sometimes say that the final part of grief is helping others.

I don’t know whether that’s true.

Grief doesn’t feel particularly linear to me.

It feels more like waves.

Some days you’re standing.

Some days you’re drowning.

Some days you’re celebrating an award and watching go-karts in the sunshine.

And some days you’re typing through the tears because your little brother should have been turning 56.

.

But I do know this:

I am still here.

And I don’t want to waste that.

So I will keep doing what I said I would do back in 2019.

I’ll keep playing my part.

I’ll keep talking about prevention.

I’ll keep talking about health.

I’ll keep trying to lift the veil of fear around cancer.

I’ll keep sharing what I’ve learned.

I’ll keep trying to turn the things I’ve been through into something useful.

Not because I survived when my brother didn’t.

But because I did.

And perhaps that’s the only answer I can give to the guilt.

Not an apology for being alive.

A commitment to make being alive count.


If you’d like to help me make it count

It’s my birthday tomorrow, and we’re raising funds for Double-zero.

Donations are our only income.

No lucrative wellness endorsements.

No affiliate links.

No paid partnerships.

No sponsorship deals.

Just people who believe that accessible, independent health information matters.

Your support is it.

And it means we can keep the resource free for the people who need it.

If you’d like to make a birthday donation to our Go Fund Me page I’d be incredibly grateful.

Because six years ago, I decided I wasn’t going to let survivor guilt stop me from playing my part.

I’m still playing it.

For everyone who didn’t make it.

For everyone who is still working it through.

And, perhaps most of all, for my little brother.

‘Til next time, Denise


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Published

By doublezero100

Denise Stevenson founded the health and wellness charity Double-zero.org in 2021 after healing from stage 3 breast cancer at (5-zero) and realising there was no one source to access the wealth of resources that had guided her back to health without the mastectomy her oncologist said was a certainty. Denise is a church founder and president, author and local councillor. She's English-born and has French nationality after living there with her husband and 3 girls for the past 20 years.

38 comments

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