Ad revenue keeps our community free for you

How to Navigate Ongoing Grief with a Chronic Condition

COPD Basics

January 02, 2023

Content created for the Bezzy community and sponsored by our partners. Learn More

Photography by Cinema Tigers/Stocksy United

Photography by Cinema Tigers/Stocksy United

by Lauren Selfridge, LMFT


Medically Reviewed by:

Tiffany Taft, PsyD


by Lauren Selfridge, LMFT


Medically Reviewed by:

Tiffany Taft, PsyD


When you’re living with a chronic condition, you may never stop grieving the life you had before your diagnosis. Here’s how to recognize and live with ongoing grief.

Living with a body that has a chronic illness can mean navigating grief about what we’ve lost or never had, what we wish we could do but can’t, and how these health challenges have affected our relationships.

Some of us live with predictably unpredictable symptoms, some of which can arise at any moment. Levels of disability may wax and wane, and for some, consistently increase over time.

As a psychotherapist specializing in chronic illness and living with multiple sclerosis (MS) myself, I’ve had the opportunity to witness the many ways that grief can show up along the chronic illness journey.

There are many beliefs about what grief is, what roles it can and should play in our lives, and how long it lasts. But the more I learn about grief, the more I realize that it is a varied and deeply personal experience from person to person. It can take many forms, we all often process it in different ways, and there aren’t any real rules on how to grieve the “right” way.

Join the free COPD community!
Connect with thousands of members and find support through daily live chats, curated resources, and one-to-one messaging.

Coming face-to-face with the hard stuff

Folks living with bodies that don’t experience chronic illness don’t necessarily think the way we do about disability, the truth of our mortality, and how aging will inevitably change our bodies.

Those of us who do live with chronic illness are reminded of these difficult truths monthly, weekly, daily — and sometimes hourly and minute-to-minute.

Whether we like it or not, part of the path of chronic illness includes grief and a heightened awareness of all that our bodies will eventually face (and of course the challenges we’re already facing).

Grief can show up when new symptoms arise, when an ongoing symptom wears us down, when someone we love just doesn’t seem to understand what we’re going through, and when we miss out on activities that our non-disabled friends are able to participate in easily.

In these moments, we may reflect on the trajectory of our lives and a potentially uncertain future (or possibly a predictably challenging future).

Fears may come to the surface with questions like:

  • Why is this happening to me in particular?
  • If it’s hard for me now, will it always be this way?
  • Will it keep getting harder?
  • Will anyone ever really understand what I’m going through?
  • Is this my fault?
  • Will I ever feel deep joy again, and if so, when?

From this place, we may also connect with a longing for what it would mean to have a carefree relationship with our bodies.

Can you blame us? “Carefree” and “body” in the same category would be pretty amazing!

Ad revenue keeps our community free for you

Understanding what grief is — and isn’t

Grief isn’t a reflection of whether or not we are evolving, and it’s not a measure of how mature, responsible, or even how happy we are. It’s simply one of the many instruments in the complex symphony of our lives.

We can be in the midst of a blissful and transformative moment and still have grief at our side. Grief doesn’t cancel out joy, and joy also doesn’t cancel out grief.

Grieving can look like:

  • curling up in a ball and crying
  • doing something you love while feeling deep sadness, anger, or fear and allowing both the joy and the pain to exist simultaneously
  • isolating from friend connections
  • talking to someone you trust about what you’re feeling in the moment
  • writing about your fears, hopes, wishes, regrets, disappointments, and exhaustion
  • sitting near, cuddling, or petting a special animal while experiencing strong emotions, mild emotions… or none at all
  • letting the sink get full of dishes because your heart is broken
  • cleaning your house from top to bottom, dancing, going for a walk, or stretching so that your body can process some of the physical sensations of grief

Grief takes so many forms that I wouldn’t be able to list them all.

My idea of grief is that it’s an experience of being honest about how we actually feel in a given moment — even when we don’t like what we’re feeling.

But grief also includes times when we don’t know what we’re feeling, aren’t aware that we’re in the midst of grief, or aren’t honest with ourselves about our emotions because we aren’t ready yet. Yes, all of those things are included in what it means to grieve!

How to be a grief companion to yourself

If I could give you one recommendation for how to navigate a healthy relationship with yourself and with grief, it would be this: Decide that everything you feel makes sense.

Self-validation means acknowledging what you’re feeling and thinking and intentionally seeking context for why it’s completely understandable that you feel and think this way, in this moment.

Examples of self-validation

  • “It makes sense that I’m scared because I have a body that’s dealing with pain/unpredictability/fatigue. I can’t know what will happen next, and that’s scary. Of course I’m freaking out!”
  • “It makes sense that I want to take a break from all my emotions and watch a movie because it can be exhausting to process so much. I’ve cried a few times today and I’m ready to rest. Of course I want to zone out with a good story!”
  • “It makes sense that I’m angry about not being able to go to my friend’s wedding. I really care about her, I want to be a part of her big day, and it’s not fair that my condition makes it less safe for me to travel right now. Of course I feel left out!”

When you become skilled in self-validation, it increases the trust in your relationship with yourself and it saves a lot of time and energy.

On the other hand, resisting what we’re really feeling in a moment may take the form of self-invalidation.

Examples of self-invalidation

  • “This isn’t that big of a deal.”
  • “I should be over this by now.”
  • “I shouldn’t be feeling this way.”

Self-invalidation can prolong the most uncomfortable parts of our pain rather than letting those parts naturally subside with the company of our loving attention.

And don’t get me wrong, even the most practiced self-compassion educators and (ahem) experienced therapists can struggle with self-validation.

We may recall times when we’ve felt minimized, misunderstood, or chastised about our experiences in the past and superimpose that type of response onto our current situation by minimizing or chastising ourselves in the present.

It makes sense that this happens because it’s what we learned from those past interactions. And we’re human, so of course we can’t be perfectly skillful with every emotional response. (See what I did there? I validated us all!).

Ad revenue keeps our community free for you

Finding chronic illness grief companions

It’s important to share with trusted others about our chronic illness grieving. There’s something especially powerful about sharing with other folks in the chronic condition community.

There are some things you simply don’t need to explain to someone who understands ongoing pain management, challenging medical treatments, isolation due to dwindling energy levels, and the frustrations of well-meaning folks who just don’t understand.

Feminist author Carol Gilligan once wrote: “A voice without echo dies.”

This is a beautiful way of saying that we need each other’s help with making sense of how we feel, what we think, and what we experience in our lives.

There’s nothing like moving onto the next steps of a difficult journey, knowing that you’ve got even a few understanding people rooting for you.

The words “me too” can mean a whole lot when they’re coming from someone who truly understands living in a chronically ill body.

Sharing with someone else who understands not only allows us to know ourselves better but can help us feel accepted, understood, and at peace with who we are. In other words, it does a whole lot for our self-esteem and confidence.

There’s nothing like moving onto the next steps of a difficult journey, knowing that you’ve got even a few understanding people rooting for you.

And here is a note to all my self-identified capable, powerful, resilient, “too busy for that” chronic illness friends out there: I’m talking to you, too! Folks who identify this way are often less likely to intentionally reach out to others for chronic illness support through conversation or group connection.

I recommend cultivating at least one or two relationships in your life with other people living with a chronic health condition. Even if they don’t understand your personal health journey perfectly, they will likely offer tremendous relief, companionship, humor, and general understanding in your life.

Don’t underestimate the power of a compassionate other who “gets it.”

The other side of grief

Grief has been an unexpected window into what I most deeply value, cherish, and love about being alive. If you think about the loss of a loved one, it’s the fact that we loved them in the first place that leads us to feel deep pain once they’re gone. The same is true for anything we lose — or partially lose — due to illness.

There’s nothing worth missing that we didn’t love in the first place.

I’m not saying this to help you “feel good” about all of the painful losses that a chronic condition brings. But I do want to help complicate our shared perspective on what it means to grieve the changes our bodies endure as a health condition progresses.

Grief is the other side of love. It’s a compass pointing us in the direction of what is important to us.

Grief has been an unexpected window into what I most deeply value, cherish, and love about being alive.

So what do we do with this grief? In some ways, I like to think we can use it to ready our hearts for experiencing more of what we love. We get to acknowledge the bittersweetness of all that we can still do, be, feel, and have with the bodies we’re in.

So maybe what we can do with grief is let it be its own thing but also let it impact the areas of our lives that aren’t all about grief.

I know that when I see a sunset or spend time with a loved one or go for a swim, and I look through the lens of someone who knows she’ll only get to do these things a limited number of times while on this earth, it allows me to appreciate the full experience in a different way. I experience it in a grief-impacted, heart-broken-open, deeply appreciative way.

Ad revenue keeps our community free for you

Remember this

It makes sense to feel alone in your pain, confused about why the challenges of your chronic condition are so relentless, longing for a different type of life, and disappointed and surprised about new symptoms.

Everything you feel makes sense.

Allow time and space to feel your emotions. Talk with friends, a therapist, or a chronic condition support group about what it’s like to be you at this moment in time.

And know that grief being a part of your journey doesn’t mean you’re “doing it wrong.” It means you’re fully human — and fully alive.

The same heart that is capable of grieving (your heart) is also capable of deep joy.

I am rooting for you, and while I’m not glad we both understand what it means to experience chronic illness grief, I’m glad we’re not alone.

Medically reviewed on January 02, 2023

Join the free COPD community!
Connect with thousands of members and find support through daily live chats, curated resources, and one-to-one messaging.

Like the story? React, bookmark, or share below:

Have thoughts or suggestions about this article? Email us at

About the author

Lauren Selfridge, LMFT

Lauren Selfridge is a licensed marriage and family therapist in California, working online with couples and people living with chronic illness. She hosts the interview podcast, “This Is Not What I Ordered,” focused on full-hearted living with chronic illness and health challenges. Lauren has lived with relapsing-remitting multiple sclerosis for over 5 years and has experienced her share of joyful and challenging moments along the way. You can learn more about Lauren’s work on her website or follow her and her podcast on Instagram.

Related stories

Ad revenue keeps our community free for you