Living with Uncertainty: The Psychology of Not Knowing What's Next

Introduction

Life has always been uncertain. But when you're living with a chronic illness like Multiple Sclerosis (MS), that uncertainty becomes more personal, more pressing—and often, more overwhelming.

What if my symptoms get worse?
Will this treatment still work a year from now?
Will I be able to work, travel, or live independently in five years?

These are not just casual musings. They're core anxieties that touch your identity, relationships, and sense of safety. And they’re incredibly hard to sit with.

But you’re not alone—and uncertainty doesn’t have to rule your life.

This article will explore:

  • Why uncertainty feels so painful
  • The psychology behind our fear of the unknown
  • How uncertainty affects people with MS specifically
  • Practical tools to live well even when you don’t have answers

Let’s walk through the fog—together.

Looking for an online therapist? Click here.

🧠 Why Uncertainty Feels So Hard

The human brain is wired for prediction and control. Our survival once depended on our ability to anticipate threats, prepare for danger, and avoid the unknown.

In modern life, uncertainty feels threatening—even if there’s no physical danger.

That’s because:

  • Your brain sees unpredictability as a loss of control
  • It triggers your stress response (fight-flight-freeze)
  • You may begin to overthink, imagine worst-case scenarios, or avoid decisions altogether

People often say, “I’d rather know something bad than not know at all.”

That’s how much we crave certainty—even painful certainty.

🌀 The Emotional Toll of “Not Knowing”

Uncertainty doesn't just cause mental tension—it can create a full spectrum of emotional reactions:

  • Anxiety: What if things go wrong? What if I’m not ready?
  • Irritability: Why can’t I just get a clear answer?
  • Overthinking: I keep replaying the same worries.
  • Hopelessness: If I can’t predict anything, why try?
  • Avoidance: I stop planning altogether because it’s too overwhelming.

These reactions are normal—and human.

But if they go unmanaged, they can spiral into burnout, depression, or emotional paralysis.

🧩 Uncertainty and MS: A Unique Burden

For people living with MS, uncertainty is baked into the diagnosis.

  • Will this flare be temporary or permanent?
  • How fast will the disease progress?
  • Should I change medication now or wait?
  • Will my cognitive symptoms worsen?
  • How do I plan a life when my abilities keep shifting?

You’re constantly making choices with incomplete information. No two MS journeys are alike. And no doctor, no matter how good, can tell you exactly how things will unfold.

That’s not just difficult—it can feel unbearable.

🔄 The Loop of Uncertainty and Stress

Here’s the hard part: uncertainty causes stress, and stress worsens MS symptoms.

It’s a feedback loop:

  • You don’t know what’s coming.
  • That causes anxiety.
  • Anxiety causes fatigue, brain fog, or sleep issues.
  • These symptoms increase fear and frustration.
  • Which loops back into… more uncertainty.

The key to breaking this loop isn’t in forcing certainty—it’s in learning how to relate to uncertainty differently.

🧘 The Psychological Skills That Help

1. Emotional Agility

Coined by psychologist Susan David, this skill is about being able to:

  • Recognize your emotions without being ruled by them
  • Stay curious, not reactive
  • Respond flexibly rather than rigidly

Instead of saying, “I have to know what’s coming,”
You learn to say, “I don’t know what’s next—and I can still take the next step.”

2. Cognitive Flexibility

This is the ability to shift your thinking when new information arises.

Instead of clinging to one future or outcome, cognitive flexibility helps you:

  • Adapt to change without losing your identity
  • See multiple possibilities, not just the worst case
  • Reduce black-and-white thinking (“If I can’t do X, then life is over”)

This mindset creates room for resilience.

3. Radical Acceptance

Popularized by psychologist Marsha Linehan (DBT therapy), radical acceptance means fully acknowledging:

“This is what’s happening. I may not like it, but it is real.”

It doesn’t mean giving up. It means stopping the internal war with reality.

Once you stop fighting the fact that uncertainty exists, you can focus on what’s within your control.

Looking for an online therapist? Click here.

🛠 How to Cope With Uncertainty in Real Life

Let’s go from theory to practice. Here are grounded ways to reduce the stress of uncertainty:

🗓 1. Create Structure Where You Can

When life feels unpredictable, even small routines can help your nervous system feel safer.

Try:

  • A consistent morning or bedtime routine
  • Weekly meal planning
  • Using a planner or calendar to outline your days
  • Daily “anchor points” like a walk, journaling, or meditation

Routines = psychological safety.

🖋 2. Journal Your Fears—and What’s Underneath Them

Try this prompt:

“What am I afraid might happen, and what does that mean to me?”

Example:

  • Fear: “I’m afraid I’ll lose the ability to walk.”
  • Meaning: “That would mean I lose independence, and I won’t feel like myself anymore.”

Once you see the deeper fear (loss of self, worth, dignity), you can work with that—not just the symptom.

🎯 3. Focus on What’s in Your Circle of Control

You can’t control how your MS will evolve.

But you can control:

  • How you respond
  • What you eat, if it supports your energy
  • Whether you rest or push through
  • Who you let into your support circle
  • How much you educate yourself about options

Make a list of what’s yours to manage—and let the rest go.

🧍4. Talk Back to Catastrophic Thinking

When your brain says:

“Everything is going to fall apart.”

Try replying with:

  • “That’s a fear, not a fact.”
  • “It’s possible things won’t be perfect—and I’ll still cope.”
  • “I’ve survived 100% of my worst days so far.”

It’s not about positive thinking. It’s about balanced thinking.

💬 5. Normalize Uncertainty by Talking About It

Chronic illness can be isolating. Uncertainty makes it worse.

Sharing your fears with:

  • A therapist
  • A support group
  • A trusted friend or partner

…can help you feel seen. Naming your fears out loud gives them less power.

🎈 6. Practice Present-Moment Anchoring

Uncertainty lives in the future.

To break its grip, return to now:

  • What are 3 things you can see?
  • 2 things you can feel?
  • 1 thing you’re grateful for in this moment?

Grounding techniques lower anxiety and calm your nervous system.

💡 7. Let Go of “Life as It Was Supposed to Be”

This may be the hardest—and most freeing—practice.

We often suffer not from what is, but from our attachment to how we thought life would go.

Releasing that imagined timeline opens up space for new versions of joy, meaning, connection, and strength.

It doesn’t mean your dreams are gone.
It means they might take a different shape—and still be beautiful.

🧡 What Resilience Looks Like in the Face of Uncertainty

Resilience is not being unaffected by change.

It’s not always being positive.

Resilience is:

  • Being honest about your fears
  • Giving yourself grace when you’re overwhelmed
  • Choosing to show up anyway
  • Finding meaning, even in the unknown

It’s messy. It’s brave. And it’s something you’re already doing—just by living your MS journey with courage.

✨ Real Stories, Real Strength

“I stopped waiting for things to be certain before I allowed myself to feel joy.”
—Jen, living with MS for 12 years

“I used to plan my whole life 6 months in advance. Now I plan for today. And that’s enough.”
—Luis, 42

“The fear hasn’t disappeared. But it no longer controls my every decision.”
—Aisha, newly diagnosed

🌈 Final Thoughts: You Can Live Well, Even Without a Map

Uncertainty may always be a companion on your journey with MS.

But it doesn’t have to be the driver.

You don’t need all the answers to move forward.
You don’t need perfect clarity to build a meaningful life.
You only need the willingness to take one step at a time—and meet yourself with compassion along the way.

Looking for an online therapist? Click here.

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