5 Stages of Grief With a Chronic Illness Diagnosis

When you are diagnosed with a chronic illness like an autoimmune disease, or disease that does not have an effective treatment, it can be devastating. Many people will cycle through the five stages of grief repeatedly after their chronic illness diagnosis as they mourn the loss of their healthy selves, but you can gain strength through understanding the process.

“I think I hate you.”

That’s what I told the doctor when I was first diagnosed with Crohn’s Disease.  I had just come out from the anesthesia, and the doctor brought me the news.

When he first said the words, I had no idea what they meant.  I’d never heard of Crohn’s or ulcerative colitis before.  So I simply asked him if it was something that I would always have, or if there was a cure.

“There is no cure.  This is lifelong.”

That’s when I told him I hated him.  I blame it on the anesthesia – I apologized profusely about 10 minutes later, multiple times.  (In fact, I think I actually shouted my apology down the hallway to him as well.)

Me getting ready to go in for (another) surgery.

Chronic Illness Feels like a Death Sentence

Being diagnosed with a chronic illness is usually a shock.  Even if you have been ill for a while, when you finally put a name to what your body has been doing, it feels very final.

It feels like a death sentence.  And in some ways, it kind of is, even if your diagnosis isn’t terminal.

A chronic illness represents the death of who you were and who you dream of becoming.

Can you still achieve your dreams?  Of course you can.  Most of the time.  But it will now be twice as difficult, and some things you may simply never be able to do again.

For me, it was the death of my future self – who I envisioned myself to be.

I was going to continue teaching to put Phillip through graduate school, and then we were going to start our very large family.  We would space our children close together, and I was going to be the typical stay-at-home-mom that cooked dinners, had Church callings, and raised my children in the gospel.

Now 7 years, 35+ hospitalizations, and 2 kids later, things have been very different than how I had planned.

After my first feeding tube was put in.

Don’t get me wrong.  I wouldn’t change my life for anything!  I am so grateful to my Heavenly Father for the things I have learned in this journey.  My testimony has been strengthened in ways that I never could have dreamed of.

However, at times I will still feel a tug of sorrow about what I don’t have.

In some ways, I’m fortunate – I was sick before becoming a wife and mother.  It’s all my family and I know.

Many people are in the middle of their roles when suddenly it all changes.  They may be in a car accident and lose the use of their legs.  They may develop cancer.

Whatever the challenge, a physical, chronic illness often means the end of your life as you are used to living it, and requires adjustment.

Read: 6 Ways to Feel Like a Good Mom Even When You’re Sick

The Spoon Theory

There is a wonderful analogy about chronic illness called “The Spoon Theory.” If you haven’t heard of this, you need to stop right now and go read it, or the rest of this post won’t make very much sense!

Just as you need to process the death of a loved one, you need to process the death of your healthy self.  You need to pass through the five stages of grief in order to reach acceptance, so you can continue to live a full life.

To be clear, it is perfectly okay to take the time to grieve.  Sometimes we worry that to feel this way about a trial indicates a lack of faith or trust on our part about God’s plan.

That simply isn’t the case.  Just as we would never tell someone who lost a close friend or family member to “just move on with it,” we need to give ourselves grace and allow ourselves to fully process what’s happened to our bodies.  We need to go through the five stages of grief with our chronic illness.

Bruising from so many IV attempts every single day for months.

The 5 Stages of Grief with a Chronic Illness

Stage 1: Denial

The first stage of grief when you’ve been diagnosed with a chronic illness is denial.  There’s no way we can be sick. We wake up with 5 spoons, but decide to act like we have 30 spoons like we usually do.

Then we start getting second and third opinions, desperate to find a doctor that will give us a different diagnosis or order a test that has a different result.

We think that there’s no possible way we could be sick.  There must have been an error with the labwork.  The nurse must have accidentally switched the blood with someone else’s.  After all, it happens on Grey’s Anatomy all the time!

Denial does not mean that we refuse to believe that we have the condition.  Instead, it also can mean that we shut down.  We don’t want to see more doctors or set that appointment with the specialist.  If we ignore it, maybe it’ll just go away.  After all, mind over matter, right?

It’s okay to look for second opinions, to be wary about trusting a diagnosis.  In fact, it’s a good idea to make sure that a serious chronic illness is really what’s happening before we jump into the heavy-duty treatments that can often accompany a chronic condition.

Eventually, however, it begins to dawn on us that yes, we really do have Crohn’s.  Or cancer, or we really are paralyzed.  Or we may never be able to eat our favorite food again.

Read: When You’re Reminded Daily of Your Grief

This leads us into our next stage of grief.

stages of grief chronic illness
Acupuncture to help control inflammation.

Stage 2: Anger

The second stage of grief after you get a chronic illness diagnosis is anger, which is the stage I jumped right into after the doctor gave me my diagnosis and I told him I hated him.

Who we’re angry at varies from person to person.  Some of us become angry with the doctor.  Others of us get angry with God.  Still others become angry at our parents, for providing whatever gene it was that caused our health issue. We grab the few spoons that we have, and we throw them in frustration.

If the chronic condition is actually caused by something else, like a car accident, then our anger may be with ourselves or others who caused it.

We may even lash out in anger at our friends and loved ones who try to help us.

Again, anger is normal.  All of the stages of grief are normal!  It is okay to go through each one of them.  If we repress that anger, it can fester inside of us.  We’ll become bitter and resentful.

Instead, we need to work through it.  The opposite of anger is love, and we can pray to have the love of God.  We can turn to Him in prayer and ask Him to help us understand, to soften our hearts.

Read: How to Make God a True Partner in Your Life

As we lose that anger and try to love our broken bodies (and that can take time), we begin to move into the next stage of grief.

stages of grief chronic illness
Me, after a month on a feeding tube, getting only ~600 calories per day.

Stage 3: Bargaining

Bargaining is the third stage of grief with a chronic illness, and it’s often the stage that many Christians get stuck in.

After we’ve finished being angry with God, we start to look to Him to fix what’s wrong with our body.  He did create us, after all, and we know He has the power to fix us. We think if we use our spoons to do spiritual activities, God will grant us more spoons.

Many times, we feel as though our health issues are due to a lack of faith.  How many times do we read in the scriptures of Christ healing people because of their faith?  Look at the woman with the issue of blood, at Lazarus, and at the dozens of other miracles where Christ healed the lame, the sick, the blind, and even the dead.

stages of grief chronic illness
Visits from my daughter after my first (or second?) bout of sepsis. Along with it came c. diff. (again), pancreatitis (again), and a Crohn’s flare (again).

And then we try to bargain with God.  We promise Him that we will be more faithful, go to church more, pray more frequently, give up ______ (insert whatever commandment we are struggling with), if He will only make us well again.  We swear that we’ll use our spoons more wisely if only He’ll give us more of them.

However, just because God has the power to heal us, doesn’t mean He will.  In fact, the majority of the time with chronic illness, He does not miraculously heal us.

Read6 Things to Remember When God Doesn’t Fix It

When all of our pleading and bargaining appear to be in vain, we move into the next stage of grief.

Stage 4: Depression

Depression is probably the most difficult stage of grief with chronic illness to get out of, especially with a chronic health condition.

Once we realize that we’re not going to be miraculously cured anytime soon, no matter how good we are, then we start to feel as though we’re never going to get any better than we are now.  The future is most likely going to be filled with pain, with doctors, and with sacrifices.  That’s a lot to take in.

This is where we begin to fall into situational depression.  Whereas “traditional” depression is a chemical imbalance in our brains, situational depression occurs because we have an overwhelmingly difficult circumstance and we cope with it by shutting down.

stages of grief chronic illness
Headed to the park just two blocks away – I wasn’t strong enough to walk that far.

Taking a shower is twice as difficult, so why bother? All motivation disappears. Whether we wake up with 5 or 15 spoons that day, we only use 1 or 2 of them.

Some people are able to work through this depression on their own, but many cannot. There is no shame in seeking counseling and medication to help you learn how to cope with your “new” life.

Read: What I Wish Someone Had Told Me About Depression

Once we sink to the bottom of our depression, we can either stay their or go up! How long we stay depends on many factors. Moving up, however, is the last stage of our mourning period – acceptance.

Stage of Grief 5: Acceptance of your Chronic Illness

Acceptance is more than just recognize this illness is lifelong. It is deliberately choosing to adjust your life to the situation. There is not much you can do about your health; flares will occur without warning, oftentimes. But you can choose what to do with what you have.

Each morning, you wake up and take inventory of your spoons. Then you use them as wisely as you possibly can. You learn to prioritize. You focus on the things that are truly important in life.

Read: Stop Trying to Sprint Through Life – It’s a Marathon

So often we are told to not allow trials to define us. But you should let it define you! Allow it to shape you and mold you and give you the strength God wants for you. Let it make you into the person He wants you to be.

Acceptance takes time

Getting to this last step can take weeks, months, or even years. There is no way to jump to it. There is no magic step that will allow you to suddenly have perfect clarity about your new life. Now amount of faith will allow you to jump to acceptance.

In fact, if you try to skip or repress the emotions at other stages, they will eventually bubble over and consume you. It is so much better to allow yourself time to pass through each step, constantly asking for God’s help along the way.

If you want to help other chronically ill people like you, join Rare Patient Voice.  It’s an organization that facilitates communication between patients and the medical community – and you always get paid for the opportunity!  If you qualify, you’ll receive a $5 Amazon gift card.

These stages don’t necessarily happen in this order.  In fact, sometimes you cycle through them again and again when you have a particularly difficult day that reminds you of how painful and frustrating your body can be.

When it is hard, and I do start the cycle over again, I turn to this list of over 150 resources I’ve put together to help me get through it.  There are song, scriptures, General Conference talks, and more.

With the Lord’s help, though, you can reach the end. And the peace and comfort that comes with acceptance is beautiful.

If you are a member of the Church of Jesus Christ of Latter-day Saints and you have a chronic illness, you may be interested in joining our Facebook group specifically for chronically ill Latter-day Saints.

The Thomas Family, Fall 2018.

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  1. Oh my! Thank you for sharing this! I was diagnosed with Ulcerative Colitis almost 20 years ago! I can so relate to this. It is very hard to deal with being vulnerable, with being “less.” I have clung to 2 Corinthians 12:8-10.

  2. wow! You do not know how reading has helped me, since I started, I realized that your story was mine, with different names, but that’s just how I’ve lived it. I have been diagnosed with Chronic Renal Failure, my grandmother died of that, I added that my Shock was strong just to remember the kind of life she had in her last years. I am only 33 years old and have two small daughters and I think I am still between stage 3 and 4, but in spite of my circumstances, I have faith that I am going to leave the Depression, thank you for your testimony, it really gives me encouragement!

    1. I am so sorry for your diagnosis – it’s much harder when you know someone who has lived with it and you saw how hard it was for them. You’re not alone int this! And you can do it!

  3. Love this! Thanks for sharing on our Facebook group. I think I’ve cycled through this several times as I’ve gotten better, regressed, got new diagnosis, taken steps forward and back. Thanks for your perspective!

  4. Beautiful insights. I have mild Crohns but still find myself resentful of my down days. I try to remind myself of all I can do! Prayers for you and your family on this journey.

  5. I was diagnosed with Multiple Scleroses in October. Thank you for sharing your story. Some of the stages happen to pass more quickly than others. Fortunately my ms was caught fairly early but it’s still life changing. For me it was mostly a relief to finally have answers to what I had been feeling for years. It gave me an excuse to let go of the things that were wearing me too thin. Perhaps I’ve swung to far in the direction of not using all the spoons I have though… good food for thought.

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