There's probably something in your home you can't bring yourself to throw away. Maybe it's running shoes, a concert ticket stub, or a work badge from a job you used to be able to do. You don't use it anymore, and part of you knows you might never use it again. You still can't let it go, because letting it go would mean admitting something you haven't said out loud yet: you miss who you were before POTS, and some days that missing feels bigger than any symptom.

If that's you, here's the uncomfortable truth nobody puts on the diagnosis paperwork. Grief is a normal, expected part of living with a chronic illness. It isn't a sign that you're coping badly. And it doesn't behave the way grief is supposed to. It doesn't move through tidy stages and then end. It comes back on a birthday, at a wedding you leave early, or on a good day that makes you remember what normal felt like.

This article covers one idea: why grief over a chronic illness keeps returning, and why that's a feature of the loss, not a failure on your part.

The grief that doesn't get a funeral

When someone dies, there's a structure for it. People bring food and send cards. There's a ceremony that marks the loss as real and finished. With POTS, there's none of that. Your old life didn't die on a single date. It wore away one skipped plan, one shortened shower, and one turned-down invitation at a time.

The family therapist and researcher Pauline Boss called this kind of loss ambiguous loss: a loss without clear edges or an ending, and without social permission to mourn it. Her work started with families of people who were missing, or physically present but changed by dementia. The idea fits chronic illness closely. You're still here, and you still look like yourself. Yet something real is gone, and the people around you may not see it.

Boss's key insight was that ambiguity freezes grief. Our minds want to resolve a loss: either it happened or it didn't. When the answer is “both,” we get stuck going back and forth between hope and despair. A good week makes you think you're getting better. A flare makes you think you never will. Neither thought is the whole truth, and swinging between them wears you out.

Why the stages don't fit

Most people know the five stages of grief: denial, anger, bargaining, depression, acceptance. Elisabeth Kübler-Ross described them from her work with dying patients, and she later said they were never meant to be a strict sequence. Even so, the model has stuck in popular culture as a checklist. You're supposed to work through it and come out the other side at acceptance.

Chronic illness doesn't allow that ending, because the loss isn't over. In 1962, the social worker Simon Olshansky gave a name to something he saw in parents of children with lifelong disabilities: chronic sorrow. It describes grief that is ongoing and comes back periodically, set off by moments that bring the gap between the expected life and the actual one into focus. Researchers and clinicians later applied the idea to adults living with long-term illness.

Chronic sorrow isn't the same as depression. You can laugh, work, love people, and enjoy a quiet afternoon while still carrying it. It shows up in waves at predictable points:

  • Milestones: birthdays, anniversaries, the date you were diagnosed
  • Comparisons: a friend's hiking photos, a coworker's promotion
  • Thresholds: the first time you use a shower chair, a mobility aid, or a disabled parking placard
  • Good days: oddly, feeling well can bring grief, because it reminds you what you're missing

When you know these triggers are normal, a wave of grief stops feeling like a relapse into failure. It's what happens when you meet a loss you're still living with.

The loss underneath the loss

In 1982, the medical sociologist Michael Bury described chronic illness as biographical disruption. His point was that illness does more than affect your body. It breaks the story you had about your own life. You had assumptions about your future, your career, your relationships, and what your body would allow you to do. POTS took those assumptions away without asking.

The sociologist Kathy Charmaz went further, writing about loss of self as a basic form of suffering in chronic illness. People in her research didn't only grieve the activities they lost. They grieved who they had been while doing them: the reliable friend, the person who never cancelled, the one with energy to spare.

This is where POTS grief often hides. You may think you're upset about missing a concert. Underneath, you may be grieving being the kind of person who goes to concerts. That's a harder loss to name, so it often comes out sideways, as irritability, guilt, or a flat numbness you can't explain.

Acceptance isn't what you think it is

Many people with POTS resist the word acceptance because it sounds like giving up. It sounds like agreeing that this is fine.

In Acceptance and Commitment Therapy (ACT), an evidence-based approach that has been studied in chronic pain and other long-term conditions, acceptance means something different. It means making room for painful feelings instead of using up your limited energy fighting them, so you can put that energy into what matters to you. The goal is psychological flexibility: being able to feel the grief and still take a step toward the life you want, adjusted to the body you have.

It can help to think of acceptance as a practice instead of a destination. You don't accept POTS once. You do it again on the day you need to sit down at the grocery store, and again when you cancel the dinner. Each time, you can tell yourself something like: “This is hard, and I'm allowed to find it hard, and I'm still going to do the next thing that matters to me.”

The psychologist Kristin Neff's research on self-compassion supports a related idea. Treating yourself with the kindness you'd give a friend in the same situation tends to be linked with better emotional resilience than harsh self-criticism. Most people with POTS are very hard on themselves. Grief combined with self-blame is much heavier than grief alone.

Building a new story without deleting the old one

The aim isn't to forget who you were. It's to write a version of your story that includes both the old you and the current you, with the illness as one chapter instead of the whole book.

In practice, this usually means separating values from activities. Running might have been how you expressed a value like freedom, discipline, or time alone. The activity may be gone. The value isn't. It might show up now in a slow walk with compression on, a recumbent bike session, or ten quiet minutes outside. The form changes, but the part of you it expressed is still there.

This is how grief and growth end up happening together. They aren't opposites. Researchers who study post-traumatic growth have found that people can report real positive change after hardship while still feeling the pain of it. You don't have to choose between mourning your old life and building a new one.

One important caveat: chronic sorrow and clinical depression can overlap, and POTS doesn't protect you from either. If the heaviness doesn't lift, if you've lost interest in nearly everything, or if you have thoughts of not wanting to be here, please talk to a doctor or mental health professional. In the US, you can call or text 988 at any hour. Getting help for depression isn't the same as giving in to it.

Your next moves

  • Name one specific loss today. Not “my health,” but something concrete, like “I miss walking to the farmers market on Saturdays.” Write it down. Naming a loss precisely makes it easier to grieve and less likely to come out as vague irritability.
  • Mark your trigger dates in advance. Look at the next three months and flag birthdays, anniversaries, your diagnosis date, or events you expect to miss. Plan something gentle for each one, such as a call with a friend who gets it or a comforting meal, so the wave doesn't catch you off guard.
  • Turn one lost activity into a value, then into a new form. Ask what the activity gave you, like connection, competence, or freedom. Then pick one small, POTS-friendly way to get that today, even if it only takes five minutes.
  • Talk to yourself the way you'd talk to a friend. The next time you think “I'm so useless,” stop and ask what you'd say to a friend with POTS who said that. Say that to yourself instead, out loud if you can.
  • Tell one person what you're actually grieving. Not the symptoms, but the loss underneath them. Something like “I miss being the friend who always showed up” gives people something real they can respond to.

Seeing what's still there

One of the quiet costs of chronic sorrow is that grief tends to remember only the losses. On a bad day, it feels as though POTS has taken everything. A record of your days often shows something more complicated: the walk you managed, the afternoon that went better than expected, the slow change since a medication adjustment. That's part of why we built Stable — POTS Tracker. It's a place to log symptoms, heart rate, and daily patterns, so you have evidence of what your body can still do alongside what it can't, and something concrete to share with your care team. It won't make the grief go away, and nothing should try to. It can help you see your life more fully. If that sounds useful, you can find it at stable.lumenlabs.works.