Living on Standby: Life with Chronic Pain

Living with chronic pain can change your relationship with your body, your life, and yourself.

When pain becomes a regular part of your experience, it can become difficult to know what to expect from your body. You may not know how you will feel tomorrow, whether you will have enough energy for your plans, or whether something that feels manageable today will leave you hurting later.

Over time, this uncertainty can create a feeling of living on standby.

You are living your life, but part of you is always waiting.

Waiting to see how your body feels.Waiting for the next flare.Waiting to know what you will be capable of.Waiting to see whether you can follow through with your plans.

Chronic pain can make it difficult to fully settle into the present when you are always having to account for an uncertain future.

Living on standby

Living on standby can look different for everyone.

For some people, it means avoiding plans because they don't know how they will feel. For others, it means making plans but never feeling completely confident that they will happen. It can mean keeping your schedule open just in case, hesitating to commit to things far in advance, or constantly checking in with your body.

It can even mean having a good day without being able to fully enjoy it because part of you is already wondering what tomorrow will bring.

The experience can be a little like being at an airport on standby.

You know there is a flight coming. You just don't know exactly when you will be called, or what the experience of getting on that flight will look like. So you wait. You stay nearby. You keep listening for your name. You may be reluctant to wander too far because you don't want to miss it.

Chronic pain can create a similar experience.

You may know that pain is likely to be part of your life, but you don't necessarily know what it will look like tomorrow. You don't know whether you will wake up feeling relatively well or whether you will wake up in the middle of a flare. You don't know how much energy you will have, what your body will tolerate, or whether plans you make today will still feel possible tomorrow.

So part of you stays close to the gate.

You wait.

You monitor.

You prepare.

You keep yourself ready for whatever your body might ask of you next.

And sometimes, even when the flight hasn't been called, you are already living as though it could happen at any moment.

This is one of the ways chronic pain can affect your life even when you are not actively experiencing a flare. The anticipation of pain can begin to take up space of its own.

You aren't only living with the pain itself.

You are also living with the uncertainty of when it might arrive, how long it might stay, and what it might ask of you.

The parts that develop around pain

From an Internal Family Systems (IFS) perspective, we can think about some of these responses as different parts of us trying to navigate the experience of chronic pain.

You may have parts that:

• Monitor your body closely

• Worry about the next flare

• Push you to keep going

• Encourage you to rest

• Avoid activities that might increase your pain

• Feel frustrated or angry

• Feel guilty about resting or cancelling plans

• Try to carefully plan and control your environment

• Search for answers or explanations

• Grieve the life you had before pain

• Feel discouraged or hopeless

• Fear losing independence

• Search for meaning in your experience

These parts can have very different approaches to living with pain. Some may encourage you to be cautious, while others may push you to carry on as though nothing has changed.

Rather than seeing these responses as problems, IFS invites us to become curious about them.

These parts have developed for a reason. They are responding to something that has been difficult, unpredictable, and often outside of your control.

When uncertainty takes over

One of the most difficult things about chronic pain is not always knowing what your body will do next.

Before living with chronic pain, you may have been able to make plans without thinking very much about your physical capacity.

With chronic pain, everyday decisions can become much more complicated.

A part of you may start considering how much energy something will take, how much walking will be involved, whether you will have somewhere to rest, or whether you might need to cancel.

Even making plans for something enjoyable can involve a certain amount of calculation.

This can gradually create a life that is organized around possibility rather than certainty.

You may not simply ask yourself whether you want to do something. You may also have to consider whether your body will allow it.

That constant uncertainty can be exhausting.

When parts pull in different directions

Chronic pain can also create a tension between different parts.

One part may want to protect your body by slowing down and resting.

Another may be desperate to return to a sense of normalcy and push you to keep going.

One part may avoid plans because it is afraid of becoming overwhelmed or having to cancel.

Another may resent how much your life has begun to revolve around your symptoms.

One part may be searching for answers and trying to regain a sense of control.

Another may feel exhausted by constantly thinking about your body.

These different responses can leave you feeling caught between caution and freedom, rest and activity, acceptance and hope.

IFS doesn't require you to choose one part over another.

Instead, it offers an opportunity to understand what each part is trying to do and what it is protecting.

Often, beneath these different responses is the same difficult reality: uncertainty.

When a good day doesn't feel completely safe

For some people, one of the hardest parts of chronic pain is learning how to trust a good day.

When your body feels better, you may feel hopeful and want to make the most of it.

But another part of you may remain cautious.

You may wonder whether you are doing too much, whether the pain will return tomorrow, or whether enjoying yourself today will mean paying for it later.

This can make it difficult to simply experience a good moment.

Instead of being fully present, part of you may remain on alert.

This doesn't mean you are doing anything wrong.

It means your parts have learned that your body can be unpredictable, and they are trying to protect you from being caught off guard.

Finding a little more room

The goal isn't to stop paying attention to your body.

It isn't to push through pain or convince yourself that everything is okay.

And it isn't to stop planning for difficult days.

These things can be important.

The invitation is simply to notice when your life has begun to revolve entirely around what might happen next.

You may begin to recognize the difference between listening to your body and constantly anticipating what your body might do.

You may notice the difference between resting because you need rest and resting because a fearful part is convinced something bad will happen if you move.

You may notice when planning is helpful and when it has become another way of trying to create certainty where certainty isn't possible.

These distinctions can take time.

You are more than the uncertainty

Chronic pain can ask you to live with a level of uncertainty that you never expected.

There may always be parts of you that are cautious, watchful, protective, frustrated, or afraid.

But there are also parts of you that want to live.

Parts that want connection, creativity, laughter, movement, purpose, spontaneity, and ordinary moments of enjoyment.

Living with chronic pain does not mean you have to wait until your body is predictable before you begin living.

You can make room for uncertainty while still making room for your life.

You can listen to your body without putting everything on hold.

You can care for yourself without disappearing into your pain.

And perhaps, over time, the goal is not to eliminate the uncertainty, but to develop a little more trust in your ability to meet whatever comes next.