The Grief No One Talks About After Kidney Failure (and other chronic illnesses)
Grief, healing acceptance
7/9/202610 min read
"People often think grief begins when someone dies. But for many living with chronic kidney disease or kidney failure, grief begins long before that."
When people hear the word grief, they usually think about funerals, losing a loved one, or saying goodbye after death.
But grief is much bigger than that.
Grief is the emotional response to any significant loss.
For people living with chronic kidney disease or kidney failure, grief often begins the day they hear the diagnosis—and it continues as life changes in ways they never expected.
As a renal social worker, I have the privilege of walking alongside people at some of the most difficult moments of their lives. While every person's journey is different, one thing I hear over and over is this:
"I don't even recognize my life anymore."
And yet, many people don't realize that what they're experiencing has a name.
They're grieving.
You Didn't Just Lose Kidney Function
When your kidneys stop working the way they once did, it isn't only your body that changes.
Your entire world can change.
You may grieve:
The freedom to travel without carefully planning around dialysis.
The energy you once had to work, exercise, or spend time with your family.
The career you had to leave earlier than expected.
The retirement you imagined.
The hobbies that once brought you joy.
The confidence you once felt in your own body.
The ability to eat and drink without constantly thinking about restrictions.
The independence of driving yourself to appointments or managing life without help.
The spontaneity of saying "yes" without checking your treatment schedule first.
These losses are real.
And like any loss, they deserve to be acknowledged.
The Invisible Grief
One of the hardest parts of kidney disease is that so much of the grief is invisible.
Friends may say:
"At least you're getting treatment."
"You look good."
"Be thankful medicine can keep you alive."
While those statements are often well-intentioned, they can unintentionally make people feel guilty for struggling.
Many patients begin telling themselves:
"I shouldn't complain."
"Other people have it worse."
"I should just be grateful."
Gratitude and grief are not opposites.
You can be deeply thankful for your medical team, your dialysis treatment, or the opportunity for transplant—and still mourn the life you thought you would have.
Both things can be true.
The Loss of Identity
One of the greatest losses people rarely talk about is the loss of identity.
Before kidney disease, you may have thought of yourself as:
A hard worker.
A provider.
An active parent.
An athlete.
A caregiver.
Someone who never asked for help.
Then suddenly your calendar revolves around appointments.
Your energy is measured in hours.
Your body has limits it never had before.
It can begin to feel as though your diagnosis has become your identity.
You are no longer introducing yourself as a teacher, mechanic, grandmother, or business owner.
You become "the dialysis patient."
That can be heartbreaking.
But your diagnosis is something you have.
It is not who you are.
Relationships Change Too
Kidney disease doesn't affect only the person receiving treatment.
It changes entire families.
Partners often become caregivers.
Children begin worrying about their parents.
Friends may not understand why plans keep changing.
Intimacy may change because of fatigue, medications, body image concerns, or emotional exhaustion.
Some relationships grow stronger.
Others become strained. Caregivers become fatigue and guilt may set in.
These changes can create another layer of grief that often goes unspoken.
The Emotional Roller Coaster
Many people expect sadness after a diagnosis.
What surprises them is how many different emotions grief can include.
Some days you may feel:
Angry that this happened.
Guilty for needing help.
Shame for feeling like they may have caused the illness in some way.
Fearful about the future.
Lonely because no one truly understands or able to accompany them.
Frustrated by the constant appointments.
Hopeful after good lab results.
Overwhelmed by decisions.
Peaceful one day and devastated the next.
Defeated by the constant fatigue.
There is no "right" way to grieve.
Grief isn't something you complete.
It changes shape as life changes.
You Don't Have to Earn the Right to Grieve
One of the biggest myths I hear is:
"Other people have it worse than me."
Pain is not a competition.
Your losses matter.
You do not have to wait until your suffering reaches someone else's level before allowing yourself to acknowledge it.
Giving yourself permission to grieve does not mean you are giving up.
It means you are being honest.
And honesty is often the beginning of healing.
Healing Doesn't Mean Forgetting
As a counsellor, I don't believe healing means pretending everything is okay.
Healing doesn't erase loss.
Healing means learning to carry your loss without allowing it to carry you.
It means finding moments of joy without feeling guilty.
It means adapting instead of surrendering.
It means discovering that even though life looks different than you imagined, it can still hold purpose, connection, laughter, and meaning.
You may never stop missing the life you once had.
But that doesn't mean you cannot build a meaningful life with the one you have now. There is beauty in that.
A Gentle Invitation
If you are living with chronic kidney disease or kidney failure and find yourself crying over things that seem "too small," please know this:
You are not weak.
You are not ungrateful.
You are grieving.
And grief deserves compassion—not judgment.
If you love someone with kidney disease, remember that while you may see the dialysis machine, the medications, or the appointments, there are often invisible losses happening beneath the surface.
Sometimes the greatest gift you can offer isn't advice.
It's simply being willing to sit with someone in their grief without trying to fix it.
"But You Look So Good..."
"You don't look sick."
For many people living with chronic kidney disease or kidney failure, those four words are meant as a compliment.
They are usually spoken with kindness.
With reassurance.
With the hope of encouraging someone.
But sometimes, those words can hurt more than people realize.
Because while someone may look healthy on the outside, they may be fighting an invisible battle every single day.
One that most people never see.
The Problem with Invisible Illness
When someone has a broken leg, people naturally understand that they may need help.
When someone loses their hair during cancer treatment, people recognize that they are ill.
But kidney disease often hides in plain sight.
There are no obvious signs to tell the world how hard your body is working just to make it through the day.
To everyone else, you may look completely fine.
Inside, however, your body may be carrying an incredible burden.
What People Don't See
They don't see the overwhelming fatigue that sleep doesn't fix.
The kind of exhaustion that makes getting dressed feel like climbing a mountain.
They don't see the relentless itching that can keep you awake night after night.
They don't see the nausea that makes eating feel impossible.
They don't see the restless legs that refuse to let you rest.
They don't see the muscle cramps, the headaches, the dizziness, or the brain fog that makes it difficult to remember conversations or focus on simple tasks.
They don't see the fear that comes before every blood test.
They don't see the anxiety while waiting for lab results.
They don't see the emotional weight of wondering what the future will look like.
They only see you on the days you managed to leave the house.
The Performance Many People Never Notice
Many people living with chronic illness become experts at looking okay.
You smile.
You laugh.
You show up.
You say you're "fine."
Not because you are.
But because explaining the truth is exhausting.
Sometimes it's easier to pretend you have more energy than you do than to answer another round of questions.
Sometimes you're trying to protect the people you love from worrying.
Sometimes you're simply tired of your illness becoming the topic of every conversation.
So you perform wellness while quietly carrying illness.
"You Look Great"
When someone says, "You look great," they usually mean well.
But for someone living with kidney disease, those words can create an unexpected sense of loneliness.
Because inside, they may be thinking:
"If only you knew how hard today was."
"You didn't see me after dialysis."
"You didn't see me crying because I couldn't make it through the grocery store."
"You didn't see how long it took me to recover just to be here."
The comment itself isn't the problem.
The feeling of being unseen is.
It's Okay to Miss the Person You Used to Be
Many people living with kidney disease quietly grieve the version of themselves they remember.
The one who had energy.
The one who didn't need to think about medications, appointments, or fluid restrictions.
The one who could stay out late with friends without wondering how much it would cost them physically the next day.
The one who didn't have to calculate every decision around treatment.
Missing that version of yourself doesn't mean you're ungrateful.
It means you're human.
What Loved Ones Can Do Instead
If someone you care about is living with kidney disease, remember that what you see is only part of their story.
Instead of assuming how they feel based on how they look, try asking:
"How has your energy been lately?"
"What's been the hardest part this week?"
"Is there anything I can do to make things a little easier?"
Sometimes the greatest gift isn't fixing the problem.
It's creating space for someone to be honest.
If you are feeling overwhelmed with providing the care your loved ones need, check out this blog : https://rootedrowan.com/when-you-love-someone-but-feel-emotionally-exhausted
Think you may be burned out? Click below to learn more!
You Don't Have to Prove You're Sick
One of the saddest things about invisible illness is that many people begin to feel like they have to justify their limitations.
They apologize for needing to rest.
They explain why they cancelled plans.
They feel guilty for saying no.
They push themselves beyond their limits just to prove they aren't lazy.
But your illness does not have to be visible for it to be real.
Your pain does not have to be obvious for it to deserve compassion.
You do not need permission to rest.
And you do not have to earn understanding by making yourself sicker.
Healing Includes Being Seen
As a renal social worker, I have had the privilege of hearing the stories that patients often keep hidden from everyone else.
Stories about fear.
About grief.
About losing confidence.
About pretending to be okay because it feels easier than explaining why you're not.
One of the most healing experiences can simply be having someone say:
"That sounds incredibly hard."
"I believe you."
"You don't have to pretend with me."
Being seen doesn't take away kidney disease.
But it can take away the loneliness that so often comes with it.
Moving Through Grief: Finding Hope Without Denying Your Loss
One of the biggest misconceptions about grief is that there comes a day when it simply disappears.
For many people living with chronic kidney disease or kidney failure, that day never comes—and that's okay.
The goal is not to stop grieving.
The goal is to learn how to carry your grief without letting it carry you.
At first, grief often feels overwhelming. It can consume your thoughts, your relationships, and your outlook on the future. You may find yourself mourning not only what you've lost, but also the life you thought you would have.
Over time, something gentle can begin to happen.
Not because your losses become less significant, but because your life slowly begins to grow around them.
You discover that joy and sadness can exist together.
You can laugh with your grandchildren while still wishing you had more energy.
You can be grateful for your medical team while grieving the independence you've lost.
You can hold hope for the future while acknowledging that today feels incredibly hard.
Healing isn't about choosing one emotion over another.
It's about making room for all of them.
Practical Ways to Care for Yourself Through Grief
While there is no "right" way to grieve, there are gentle practices that can help you move through it.
Allow yourself to feel what you're feeling.
There is no prize for pretending you're okay. Naming emotions—whether sadness, anger, fear, or disappointment—is often the first step toward healing.
Talk about your losses.
Whether it's with a trusted friend, family member, social worker, counsellor, or support group, grief becomes a little lighter when it is shared instead of carried alone.
Focus on what remains within your control.
Kidney disease can make life feel unpredictable. Rather than dwelling on everything you've lost, ask yourself, "What is one thing I can do today that supports my well-being?" Sometimes that may be taking a short walk, calling a friend, attending dialysis, or simply getting out of bed. the goal is not full recovery but how can I be even 5% better. Take small steps to take care of yourself only you are able to determine the best way to do that today. Maybe you need to go for a walk or maybe you need rest. Maybe you need a healthy meal or maybe a spa day. Please see this blog post to discover the best ways to care for yourself read all the way to the end to access the wellness wheel i created. It helps you to identity what areas of your life are in most need of your attention: https://rootedrowan.com/why-do-so-many-women-feel-responsible-for-everyone
Redefine what a meaningful day looks like.
Some days, success isn't cleaning the whole house or running errands. Sometimes success is making it to treatment, eating a nourishing meal, or spending quality time with someone you love. Your worth is not measured by your productivity.
Stay connected.
Grief often tells us to withdraw from others, but healing usually happens in connection. Let people know when you need company, practical help, or simply someone to listen without trying to fix things.
Be kind to yourself.
Your body is doing something incredibly difficult every single day. Speak to yourself with the same compassion you would offer someone you love who was living with a chronic illness.
Be present and notice the good moments. Finding the good in every situation does not erase the struggles. But every time we focus on something positive a part of our brain grows to actually assist us in noticing more good moments in the same environment. Maybe your dinner hit the spot, maybe you had a good visit with a friend, maybe the weather was amazing. Whatever good you can witness sit in it for a little while and absorb that experience.
There Is Still Life to Be Lived
Kidney disease may have changed your path, but it has not erased your capacity for joy, love, purpose, or connection.
There will still be birthdays to celebrate.
Sunsets to admire.
Conversations that make you laugh until your stomach hurts.
Moments of peace.
Acts of kindness.
New memories waiting to be made.
Grief may always walk beside you, but it does not have to lead the way.
With time, support, and compassion, it is possible to carry both your grief and your hope.
And sometimes, that is what healing looks like.
You Don't Have to Carry It Alone
Living with kidney disease is more than managing lab values, medications, and appointments. It is also navigating fear, uncertainty, changing relationships, and the emotional weight of a life that may look very different than the one you had planned.
As both a Registered Social Worker and a renal social worker, I have seen how powerful it can be when someone finally has permission to talk about these losses. Counselling offers a space to process grief, adjust to life's changes, strengthen coping skills, and reconnect with what still brings meaning and purpose.
Whether you are living with kidney disease yourself or supporting someone who is, you do not have to navigate these challenges alone.
At Rooted Rowan Counselling, I believe healing isn't about pretending everything is okay. It's about making space for both grief and hope, and learning that they can exist side by side.
Because while kidney disease may change your life, it does not define your worth.
It does not erase your purpose.
And it does not mean your story is over.