The Unnamed Grief of Chronic Illness: A Conversation with Brenda Snow

When we think of grief, most of us think of death. We think of funerals, loss, and final goodbyes. But there’s another kind of grief that rarely gets acknowledged—grief that’s harder to name, harder to explain, and often invisible to the world. It’s the grief of chronic illness.In my recent conversation with Brenda Snow, author of Diagnosed and founder of Snow Companies, we dove deep into this unnamed grief. Beyond that, we spoke of how it can be the starting point for something meaningful. Brenda is living proof that even when life takes a hard left turn, hope is still on the map.The Grief of Not Being BelievedBrenda’s story begins like too many others: with a body breaking down and no one taking her seriously. Strange symptoms. Exhaustion. Vision loss. A creeping sense that something was very wrong.And then the dismissal:“You’re just stressed.”Worse, she was told by a neurologist in front of her father that she should be committed. Not because she had MS—because he didn’t believe she had anything at all. That moment, of being completely dismissed, was one of the darkest in her life. I could feel it as she told the story. That’s a kind of grief no one talks about: the grief of not being heard.“There was grief even before the diagnosis. Grief from not being seen by the people who were supposed to help me.”As someone who’s spent years talking with grieving people, I recognized this pain immediately. It’s a kind of anticipatory grief mixed with shame, confusion, and deep loneliness.Hope Shows Up In Unexpected PlacesBrenda hit her emotional bottom that day. Her father couldn’t talk her out of it. She went home ready to give up.And then came the moment that shifted everything: her young daughter looked at her with big blue eyes and asked,“Mommy, are you going to die?”She didn’t have an answer. But what she did have was a reason to try one more time. That love—the kind only a child can inspire—was the spark.It’s often that way with hope. It’s not a grand rescue or a sudden fix. It’s a quiet whisper: Try again.The Grief of Chronic Illness Begins Before DiagnosisEventually, Brenda found a compassionate doctor who listened, ran tests, and gave her the name: Multiple Sclerosis.It was devastating. But it was also a relief.“If it has a name, maybe we can do something about it.”That’s when the grief really began. Because once the fog of uncertainty lifted, the reality of what she had to face came crashing in.And this is something many people don’t understand: the grief of chronic illness starts before diagnosis and continues long after. It’s the grief of waking up in a body that feels foreign. Of imagining futures that no longer seem possible. Of losing parts of yourself before anyone else notices they’re gone.The Emotional Layers: Guilt, Anger, BlameOne of the things I appreciated most in this conversation was Brenda’s honesty about what she felt in those early days: not just sadness, but guilt.“I remember thinking: What did I do to deserve this?”It’s a lie many of us believe. If something bad happened, someone must be to blame—so we turn the blame inward. We assume we’re being punished. That somehow, we brought it on ourselves.But that guilt is heavy. It drags down whatever strength we have left. As I told Brenda, I’m finishing a course on grief and guilt, and it’s one of the most persistent, damaging emotions people carry.She put it beautifully:“You did nothing to deserve this. This isn’t retribution. It’s not punishment. It just is.”What Acceptance Really Looks LikeThere’s a point in the journey with chronic illness—or any life-changing event—where you hit a crossroads: fight or surrender. But Brenda discovered a third way: acceptance.Not giving up. Not losing herself. But also not pretending to be at war with reality.She described MS as a weed in her garden, choking out everything else. Until she realized the weed wasn’t going away. And instead of fighting it, she reached for its hand.“MS was part of me. I had to take its hand and walk forward. That’s when growth began.”This moment floored me. It’s the heart of what I try to help people understand through Grief 2 Growth. Acceptance isn’t weakness—it’s strength. It’s the day we stop wasting energy resisting reality and start using that energy to rebuild.Little Wins: Making Toast & Rebuilding WorthI asked Brenda how she started finding herself again after the diagnosis. Her answer? Making toast.She remembers the day she made breakfast for her daughter from her wheelchair. Most people wouldn’t think twice about it. But for Brenda, it was a breakthrough.“I was so proud of that moment I’m still talking about it 30 years later.”That’s how healing happens. Not all at once. Not in heroic leaps. In small, daily wins. One toast. One kind thought. One hopeful act at a time.As someone who coaches people through grief, I see how often we overlook our resilience. Just getting out of bed is a win. And we need to celebrate those things out loud.From Diagnosis to Disruptor: The Birth of Snow CompaniesAfter a few years of navigating her illness, Brenda realized something: no one in the pharmaceutical world was talking to patients like her.She literally banged on the door of the company that made her medication. And to her surprise, they let her in. She shared her story—and they listened.That was the beginning of what would become Snow Companies, a global leader in patient engagement. A company that now employs hundreds, all because one woman refused to be silenced.“I was just trying to pay my bills. I didn’t mean to start a movement.”But movements often begin that way. With someone who sees what’s missing and is brave enough to say, “There’s a better way.”Reimagining Identity After IllnessOne of the most painful parts of chronic illness is the loss of identity. You’re no longer who you thought you were. People see the diagnosis before they see you.Brenda told me how hard it was to use a cane in her twenties. How the medication changed her body. How her memory and cognition suffered.“I didn’t just lose function. I lost myself.”And this is where the grief of chronic illness gets especially tricky. You start mourning futures that haven’t even happened yet. You grieve the wedding you may not attend. The job you might not return to. The normal life that slips further away.That’s why staying present matters so much. As Brenda said, if you start grieving phantom losses, you’ll be swallowed by what-ifs.What Needs to Change in HealthcareWe talked about how much more compassionate care has to become. About how doctors need training not just in medicine, but in being human.“This may be part of your daily job. But for us, it’s the day our world changes forever.”Brenda isn’t anti-doctor. She credits the right physician with saving her life. But she’s honest: the system isn’t built for empathy.And access is still a problem. Some people die without getting the treatment they need—simply because they can’t afford it.Healthcare needs a reset. Not just in cost, but in compassion.Diagnosed: A Roadmap for the Patient JourneyBrenda’s book Diagnosed isn’t a memoir. It’s a survival guide.It walks patients—and caregivers—through the messy emotional terrain of life after a diagnosis. From grief to resilience. From lost to grounded.“It’s the book I wish I had 30 years ago.”If you or someone you love is facing a chronic or life-changing illness, this book belongs on your nightstand. It’s funny. It’s honest. It doesn’t shy away from pain—but it never loses sight of hope.And if you can’t afford a copy? Brenda will send you one herself. Just email her at [email protected] Thoughts: From Buried to PlantedThis episode reminded me why I started Grief 2 Growth.Brenda’s story is everything this platform is about. We may feel buried in the darkest moments of our lives. But in time, with love, hope, and support—we grow. Not back into who we were, but into someone new.We are not our diagnoses. We are not our grief. But both are part of the soil that shapes who we become.🗣 Let’s Keep This Conversation GoingI’d love to hear from you.💬 Have you experienced the grief of chronic illness—either your own or someone else’s? What was the hardest part? What helped?👉 Leave a comment below or join us on grieftogrowth.substack.com💌 Share this article with someone who needs to feel seen🔁 Forward it to a friend or caregiver📥 Subscribe for more stories of hope, purpose, and healing📘 Get Brenda’s Book:👉 Diagnosed on Amazon🌐 Brenda’s Website:www.brendasnow.com📩 Contact Brenda:[email protected] This is a public episode. If you'd like to discuss this with other subscribers or get access to bonus episodes, visit grief2growth.substack.com/subscribe This is a public episode. If you'd like to discuss this with other subscribers or get access to bonus episodes, visit grief2growth.substack.com/subscribe