Guilt and Shame in Long-Term Illness

Illness does not only affect the body.

After a while, guilt and shame can start to creep in.

For what you do not have the energy to do.

For what you no longer do.

For the people you feel you are letting down.

For needing help from others.

For life not working the way it used to.

And somewhere along the way, you may start to think that you are the problem.

I Should Be Able to Do More

It is a common thought.

I should be able to do this.

I could do it before.

I managed yesterday.

Other people can do so much more.

But wanting to do something and having the energy to do it are not the same thing.

You can want to get up and still need to stay in bed.

You can want to go with someone and still need to say no.

You can want to help and have nothing left to give.

That is where guilt can easily find its way in.

You know what you want to do.

You know what you used to do.

And your body can manage something different now.

When You Start Feeling Ashamed of What You Cannot Do

Shame can be quiet.

You may start hiding how bad you actually feel.

Say that you are fine.

Push yourself for too long.

Avoid asking for help.

Or start explaining yourself all the time.

Why you are not coming.

Why you need to rest.

Why you are not working more.

Why you could do something yesterday but cannot do it today.

Eventually, it can feel as though you need to have a defence speech ready just to be allowed to be ill.

Guilt Towards Your Children

This one can really hurt.

I should have had more energy.

We should have done more things together.

They have had to adapt because of me.

They deserved a healthier parent.

You can carry those thoughts for a long time.

Because you see everything you did not do.

The outing that never happened.

The day you spent in bed.

The times someone else had to go with them.

All the times you said no.

But there were also things you did.

Maybe from the sofa.

Maybe from bed.

Maybe in a completely different way from the one you had wanted.

Illness can take a lot from a family.

That hurts.

You do not have to deny that for the guilt to become smaller.

But there is a difference between something being difficult for your children and deliberately making life difficult for them.

You did not choose the illness.

When You Start Believing the Way Others See You

It does not get easier when the illness is invisible.

You may hear:

“But you look well.”

“Everyone gets tired.”

“You just need to get out more.”

“You need to try harder.”

“Pull yourself together.”

And after hearing those things for long enough, they can start living inside your own head.

Am I lazy?

Am I exaggerating?

Should I actually be able to do more?

That is one of the difficult things about guilt and shame.

Eventually, nobody else needs to say anything.

You have started doing it to yourself.

But I Can Sometimes

That sentence can cause a lot of trouble.

Because yes.

Sometimes you can.

Maybe you can go out one day.

See someone.

Work for a few hours.

Laugh.

Have a really good afternoon.

And then the thought comes:

If I could do it then, why can't I do it now?

But the body is not a machine that gives you exactly the same amount of energy every morning.

A good day does not make the bad days less real.

And a bad day does not erase what you managed on the good one.

Both days belong to the same body.

Needing Help

It can be difficult.

Especially if you have always been the one who managed on your own.

The one who organised things.

Helped others.

Worked.

Drove.

Did the shopping.

Got things done.

And suddenly, you are the one who needs someone else to do those things.

It can feel as though something has happened to your value as a person.

When what has actually changed is your capacity.

Those are two completely different things.

Guilt Is Not the Same as Responsibility

There are still things you may need to take responsibility for when you are ill.

Relationships still need care.

Children still need their parents.

Life around you does not disappear.

But responsibility does not mean having to do the impossible.

Sometimes responsibility means saying:

I can't do this.

I need help.

This will have to wait.

That can be much harder than pushing yourself through one more time.

When You Stop Kicking Yourself While You're Already Down

Guilt and shame do not give your body more energy.

They do not get the undone things done.

They do not change yesterday.

But they can make an already difficult life even heavier.

You do not have to pretend that everything is fine.

You are allowed to be angry about what you have lost.

You are allowed to wish you had more energy.

You are allowed to grieve what you could not give.

But you do not have to blame yourself for your body becoming ill.

There is a difference.

And that difference can be worth holding on to.