Healing Should Expand Your Life, Not Shrink It

Quick question.

If you made two lists right now, one of every food, place, and activity you avoid in order to feel okay, and one of everything you genuinely look forward to, which list would be longer?

For many people living with chronic illness, the honest answer is uncomfortable.

Somewhere along the way, the list of what they avoid quietly became the longer one.

When Did Healing Start to Mean Avoiding Life?

It is a question worth sitting with, because almost no one chooses it on purpose.

No one wakes up one morning and decides to stop going to barbecues, skipping family trips, or declining dinner invitations, and instead organizes their entire existence around not feeling worse. It happens gradually, one reasonable decision at a time. I’m sure some of you reading this can relate.

And to be clear, many of those decisions are wise. When you are in a genuine flare, when your body is overwhelmed, pulling back to protect yourself is not a weakness. It is intelligence. Sometimes shrinking your world for a season is exactly what your body and healing requires.

But seasons are supposed to end.

What I see, again and again, is people who enter a protective season out of necessity and then never find the exit. The caution that once protected them slowly hardened into a cage. What I think is important to point out at this point, is that the question driving their life choices has quietly changed.

Two Questions That Sound the Same but Aren’t

Early on, most people ask a hopeful question:

“How can I heal?”

It is an expansive question. It points forward. It assumes there is more life to reclaim. It feels proactive and empowering.

But over months and years of setbacks, that question often gets replaced by a smaller, more anxious one:

“How do I avoid another flare?”

At first glance these sound like the same project. They are not.

“How can I heal?” organizes your life around growth, expectancy, capacity, and possibility. “How do I avoid another flare?” organizes your life around fear. One asks what you can build. The other asks only what you can prevent.

And here is the part that matters clinically, not just emotionally. Fear and avoidance are not neutral. In chronic illness, as in chronic pain, the research is fairly consistent that fear-driven avoidance can take on a life of its own, deepening deconditioning, disconnection, and disability over time. (1) The very strategy meant to protect you can quietly make your world smaller and your body more fragile. We have stopped focusing on getting better and are now focused exclusively on management strategies and the goal, the dream of a full and joyful life fades along with the hope.

Can you see it? At this moment before even reading further, take a moment to check in with your body. You may even want to feel into your body when you ask each question and reflect on how the body reacts to each question. Then maybe tap into the emotions in the body. Perhaps you notice some tightening or constriction with one of the questions – I bet you can “think” about which one might have that effect, however, I really want you to PAUSE and drop into the body and the emotions.

Once you have allowed those questions to register in your body, make a mental note, and keep reading!

The Middle Ground Most People Miss

Of course, none of this means the answer is to throw caution to the wind, ignore your symptoms, and white-knuckle your way through every trigger. That is not brave. It is just a different way of not listening to your body. And that is NOT what I am proposing you do at all.

The real work lives in the middle. You might think of it as mostly safe with a tiny sliver of allowing, within your energy envelope and simultaneously keeping your attention just beyond the border.

This may look like respecting your biology without being ruled by it, or it may look like making thoughtful, informed choices instead of fear-based ones, and being able to discern the difference. This may mean continuing to lower your cumulative load, the total weight of stressors your body is carrying (2), while allowing more room for the things you love. It means not recognizing your symptoms are real, while also not letting them become the only author of your story. It is the difference between “I’m choosing to skip this because I know it will cost me more than it’s worth” and “I’m avoiding this because I’m afraid.” The first is agency. The second is fear wearing the costume of wisdom. Learning to tell them apart is one of the most important skills in all of chronic illness recovery.

The Line I Want You to Remember

We can get so caught up in the protocols, the diet, the supplement regimens, as well as all the classes, programs and exercises to heal. We may even feel that we are 100% focusing on our healing, but if you take nothing else from this, take this:

Healing isn’t measured by how many things you’ve eliminated or even the number of things you are doing everyday to “get your health back”. It’s measured by how much of your life you are enjoying and participating in.

We have somehow built a culture of healing that celebrates the length of the “avoid” list. The longer the elimination diet, the stricter the protocol, the more impressive it seems. But a life is not healthier because it is smaller. Subtraction is not the same as wellness.

The goal was never a perfectly controlled, perfectly protected, perfectly empty life. For me, I don’t even think the goal should be getting your life “back”.

There are deep reasons that illness has shown up when it did, oftentimes because, there may have been a lack of alignment between your life choices and your deeper truth of who you are. And illness is the catalyst for you to go on a journey to rediscover yourself in a new way. This is a much bigger topic that I will revisit in the future, for now, let’s focus on discernment.

How to Tell Wisdom From Fear

So how do you actually start to loosen the grip? Not recklessly, but honestly. Here are a few questions I invite people to sit with so that you can begin to imagine possibility and hope once more.

1. Is this a “for now” or a “forever”? Protective choices made during a flare are meant to be revisited. Ask yourself when you last actually retested a limit, rather than assuming it still applies.
2. What is this decision organized around? Notice whether you are moving toward something you value or simply away from something you fear. Both can be valid. Only one can be run on autopilot indefinitely.
3. What would I attempt if I trusted my body a little more? You don’t have to act on the answer today. But the answer tells you where the cage is.
4. Am I confusing safety with living? A life with zero risk of a flare is usually also a life with very little in it. Sometimes the more honest question is not “will this cost me?” but “is it worth it?”
5. Who am I outside of my symptoms? This is the deepest one, and often the hardest. And it points toward something bigger than any food or flare.
6. Can I envision more freedom? More joy? More participation? And how do I feel this in my body? What is the body’s response to these ideas? Is it fear or expansion?

The Loss Underneath the Loss

Because here is the truth that lives beneath all of this.

Sometimes the greatest loss isn’t the picnic, the vacation, or the restaurant.

It’s the version of yourself you slowly stopped believing you could be.

The one who traveled. Who said yes. Who felt at home in their own body. Who moved through the world with ease instead of calculation. For many people, that grief, the quiet mourning of a former self, is heavier than any single symptom. And it rarely gets named, let alone tended to. (3)

That is exactly where The Unforgetting Project begins.

Because reclaiming your life is not only a physiological project. It is an identity one. At some point, supporting your biology is not enough. You also have to remember who you are underneath everything you have had to manage, and begin, gently, to believe in that person again. But not with blind hope or rigid affirmations and willpower.

Healing Toward Something

Real healing has a direction. It moves toward and often inward.

Healing it is not just the absence of symptoms, it is the slow, sometimes frightening, deeply worthwhile process of reclaiming the parts of your life that matter most to you. Whether that is the table full of beloved people or resurrecting the plans you had stopped making, or the version of yourself that you released when things got hard.

You are allowed to want your life to be full again. And in my experience of those who are curious and brave, who do this deep internal work, they become a more embodied, more alive version of themselves than they could EVER have imagined even before they became ill. (4)

If that idea stirs something in you, if you recognize yourself in the person whose “avoid” list quietly outgrew everything else, or something stirs in you as you feel uplifted by thoughts of expansion. The Unforgetting Project was built for exactly this moment and for you. It is a space to move beyond managing your body and begin allowing your life to extend beyond its current boundaries. The unforgetting project is where you get to rediscover all the parts of you that were forgotten along the way.

Healing was never meant to shrink you.

It was always meant to give you back to yourself, bigger and more spectacular than ever before.

Resources

1. Rogers AH, et al. A meta-analysis of the associations of elements of the fear-avoidance model of chronic pain with negative affect, depression, anxiety, pain-related disability and pain intensity. European Journal of Pain. https://onlinelibrary.wiley.com/doi/10.1002/ejp.1994
2. Marshall PWM, Schabrun S, Knox MF.  Physical activity and the mediating effect of fear, depression, anxiety, and catastrophizing on pain-related disability in people with chronic low back pain. PMC. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5501599/
3. Allostatic load, single, and dual chronic conditions: evidence from the National Health and Nutrition Examination Survey (allostatic load as the cumulative burden of chronic stress, per McEwen and Stellar). PMC. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8972020/
4. Grieving “the Death of Possibility”: memorable messages of (dis)enfranchised loss in invisible, physical illness. Health Communication. https://www.tandfonline.com/doi/abs/10.1080/10410236.2023.2257942
5. Post-traumatic growth as positive personality change: challenges, opportunities, and recommendations (on Tedeschi and Calhoun’s construct of growth after adversity, documented in chronic illness). PubMed. https://pubmed.ncbi.nlm.nih.gov/32897574/