4 Stages of Illness Identity: How to Find Yourself Again
Almost 20 years ago, I was sitting in a doctor’s office when I heard the words I never expected: Chronic Fatigue Syndrome. How had I gone from an athletic, hardworking veterinarian with my own mobile practice, to a sick woman with ME/CFS? What will the rest of my life look like?
My head spun with the possibilities, and suddenly the future I’d always planned on, where I’d have boundless energy to run my business and build a relationship, seemed out of reach.
The person I always knew myself to be changed, too. And that’s when the illness identity crept in–I could no longer see myself through the lens of an ‘active, successful equine dentist.’ I now saw myself through the lens of this disease.
If you can relate to any part of my story, you may have also experienced the grief and loss of your previous “self.” Maybe you had a thriving career, an active hobby, or energy that never ran out. And then after diagnosis, almost like a light switch, you’re now constantly tired, stuck in bed, and unable to socialize without crashing.
This shift of illness identity generally unfolds in four stages: Engulfment, Rejection, Acceptance, and Enrichment. And this progression isn’t always a straight line, just like the grieving process itself. But understanding each stage could be the key to rediscovering yourself.
Stage 1: Engulfment
Stage one of illness identity is known as Engulfment. This is when illness becomes the dominant lens through which you view yourself and the world.
Engulfment is a common experience upon initial diagnosis. It’s like your whole life shrinks to a pinhole, and everything becomes about managing symptoms.
Your sense of self fades as doctor’s appointments and new medications take over. You start just trying to make it through the day.
How do you know if you’re in the Engulfment stage? Here are some signs:
Constant focus on symptoms and health status.
Newly withdrawn from social activities.
Feeling consumed by the diagnosis.
Understandably, you feel this way. Your mind is trying to make sense of this major life change, especially if your condition is considered “chronic” and relapsing.
Engulfment is characterized as an overwhelming state, as you’re likely trying to learn as much as possible about managing this new health condition and a new way of living.
If you’re currently going through the Engulfment stage, be gentle with yourself. Here are a couple of things that could make it a bit easier.
Keep a “non-illness” journal.
Whether in a notebook or on your phone, this “non-illness” journal should be dedicated to exploring the things you love and experience outside your health status.
I’m at year 16 of my illness, and am finally journaling consistently. So if this doesn’t come naturally, please don’t judge yourself!
What jumpstarted my journaling habit was Julia Cameron’s book, The Artist’s Way. She introduces the concept of morning pages, where you just write. It doesn’t have to make sense, which is such a relief! I used to put pressure on myself to create something beautiful. Now, I just write, and ironically, I’ve found that the pages are filled with richer reflections.
Re-engage with a hobby you enjoy.
You might be slowly pulling away from the things that once brought you joy, whether an interest, hobby, or passion project. If it’s doable, try re-engaging with that joy again, even in small doses. Resist the urge to cut ties with everything that reminds you of your “past” self.
I pulled away from watching sports because it felt too painful. But sports can be a great social outlet. So please consider keeping some aspect of what you love in your life.
Remember, you are not your illness. But it’s okay if it feels like that sometimes.
Stage 2: Rejection
The Rejection stage is when you start pushing back against the illness, refusing to integrate it into your identity. For some people, this may occur before the Engulfment stage.
Rejection of the disease might stem from a fear that accepting it means you’re admitting defeat or somehow enhancing its impact.
Maybe you’re telling yourself, ‘It’s not that bad…’ or you’re pushing even harder, trying to prove you’re still the person you were before. But when your body rebels, the frustration and grief hit hard. You might even feel angry–at your body, at yourself, at the unfairness of it all.
Here are some signs you might be in the Rejection phase:
Ignoring symptoms or overexerting yourself
Feeling angry or resentful toward your body
Blaming yourself for setbacks
Rejecting your illness is a normal part of the grieving process. You may hear lots of self-help advice around body positivity, but forcing yourself to feel happy about it may not support your growth. Instead, aim for cultivating body neutrality. Acknowledging that your body is doing its best today is a good first step.
Remember, fighting your body won’t help your healing. But you can learn to work with it instead of against it.
Stage 3: Acceptance
Acceptance is when you come to terms with your illness. You begin integrating it into your identity, slowly but surely.
For me, a key part of arriving at acceptance was giving my illness a name (my ME/CFS is called Vivi!). That’s not to say I’m so happy she’s here in my life! But I’ve adopted her as a roommate who’s moved in permanently.
Fighting her was contributing to my bouts of depression. Now, when I start running out of energy, I speak to her. It lightens the mood so I can do what is best for my body and rest.
Here are some signs you might be arriving at Acceptance:
Increase in self-compassion
Adjusting your goals and expectations without resentment
Feeling more in tune with your body’s energy limits
Here are a couple of approaches that might help you settle into the Acceptance stage of your illness identity journey:
Modify your routines.
I’ve talked a lot about pacing in my previous posts. It’s so crucial–especially if you have some form of chronic fatigue–to understand your energy patterns throughout the day and pace yourself so you don’t burn out from post-exertional malaise.
Set flexible goals.
Your goals should agree with your body instead of pushing against it too hard. Accept that there are certain boundaries you can no longer cross, and create simple, achievable goals for yourself throughout your day. Create backup plans so you are less disappointed if your body isn’t up to the first option. This will give you some helpful momentum to tackle slightly bigger challenges.
Remember, accepting your condition doesn’t mean you’re giving up. It just means you’ve realized you can carry this and still have a full life!
Stage 4: Enrichment
Enrichment is a phase in which you experience newfound growth and self-discovery through your illness.
The enrichment state is a beautiful phase of your illness identity journey, because it’s when you begin to find strength in the parts of you that survived this. Your illness has been integrated as part of your story, but not the whole story. You will never be defined by your health condition, but you’re learning how to use it as fuel for a higher purpose and greater self-love.
Here are some signs you’ve reached the Enrichment stage:
A sense of peace with your body and health status.
Discovering new strengths and perspectives.
Feeling more connected to yourself and others.
This is the time to explore a new passion. What interests or creative outlets have emerged since your diagnosis? How has your perspective on life deepened?
Life in the Enrichment state is a beautiful time to give back to others and connect with a community through shared experiences.
This has been an integral part of my own journey, and why I launched CNN Courage a few years ago. The experience of building an advocacy platform, educating healthcare professionals, and supporting chronic illness patients has been at the heart of my renewed life purpose. And it never would’ve happened if I hadn’t developed this illness that I didn’t chose.
Remember, illness may have changed you, but it’s also uncovered strengths you never knew you had.
💡 Pro Tip: Explore the Midnight Effect Metaphor to help you manage your illness.
Move Past Diagnosis & Find Meaning
Illness may have changed your trajectory, but it didn’t erase you. And you are not broken, even if it feels that way.
As you move through these stages, keep in mind that healing isn’t a straight line. Some days, you may feel like you’re back in engulfment or rejection. On other days, you’ll catch glimpses of the person you’re becoming: more resilient, wiser, and tapped into what actually matters.
Now that I’m older, I can observe the mental strength and resilience I’ve gained from having to navigate ME/CFS for so long. I don’t like the phrase “things happen for a reason,” but I can see how this illness has prepared me to have a functional partnership with my body as I age.
If you could speak to the version of yourself before your diagnosis, what would you tell them? Would you remind them of their resilience? Of the parts of themselves that illness could never take away?
Redefining yourself takes time. It’s not about chasing your “old self” but about building something new, piece by piece. Lean into the parts of yourself that feel the most authentic right now. Those will be the foundation of who you’re becoming.
