When I was diagnosed with a chronic illness, the feelings that arose felt very similar to grief for a lost loved one. Here’s how I handled it.
Welcome to Mindset Matters — a space to learn about the mental and emotional aspects of living with chronic illness. Mindset Matters is led by Nat Kelley, a certified life and mindset coach, and founder of Plenty and Well. For Nat, mindset work was the missing puzzle piece in her journey navigating ulcerative colitis, and she’s passionate about helping empower others in their journeys.
When I was first diagnosed with ulcerative colitis, I began to experience heavy emotions that were weighing me down constantly. I didn’t understand at first what was happening until I eventually realized that this felt similar to grief when I had lost loved ones, but not exactly the same.
When we lose a friend or family member, it’s easier to recognize and understand the grief because we’ve lost someone tangible. We’re surrounded by conversations about grief and by others who are feeling the same way that we’re feeling.
But when I lost someone who was still here — namely, the former version of myself — those same conversations and feelings of togetherness weren’t there.
Because I’ve experienced both the tangible grief of losing a loved one and the sense of grief that came from receiving a life changing diagnosis, I know that these journeys can be very different. For me, however, I noticed enough similarities that it felt helpful to “process” my diagnosis in a similar manner to tangible grief. I had to move through my grief for my old self instead to develop more understanding and compassion for my “new” self.
Although the well-known model of five stages of grief has actually fallen out of favor with medical professionals, I still found it resonated strongly with my experience and it was helpful in understanding how I felt about my own diagnosis process.
This model may not resonate for you as you come to terms with your diagnosis. Even if it does, your process may be completely different than mine, occur in a different order, or skip some of these phases entirely. Here’s what it was like for me.
Denial, for me, was not only an attempt to pretend that the loss of my old self did not occur and that my diagnosis didn’t exist; it also reflected my effort to try to absorb and understand what was happening to me before I could fully embrace it. My mind needed this adjustment period, so I found it helpful rather than a sign that I wasn’t dealing with reality.
I like to think of this as my waiting phase — the phase where I was wrapping my head around it all, feeling things out, and dipping my toes in my new normal.
During this period, I spent a lot of time reflecting on experiences I knew I might not have again due to my new diagnosis and thinking about how to move forward in life without certain goals, plans, and aspects of myself.
Instead of thinking of this stage as denial, I like to think of it as my waiting phase — the phase where I wasn’t ready yet to shout from the rooftops about my diagnosis, or make lifestyle changes to support my health. I think of it as the phase where I was wrapping my head around it all. The phase where I was feeling things out, dipping my toes in my new normal, and thinking about what my new reality might be.
As I began slowly adjusting to my new reality, I began experiencing a lot of emotional discomfort, including anger.
I knew that feeling anger was entirely valid because I was experiencing so many challenges to my abilities and blocks to certain goals, like continuing my long-distance running, as well as moving out of my parents’ home as soon as possible after graduation. But due to my ulcerative colitis and a terrible flare, I had to find new forms of movement and spend an extra year and a half at home (which I now realize was something to be so grateful for).
And because there’s so much new information to process, anger sometimes felt like the easiest emotional outlet. Perhaps that’s because anger felt less vulnerable and more socially acceptable than admitting I felt sad or depressed or scared.
Even so, during this period when anger was my primary emotion, others perceived me as unapproachable (something I realized after the fact). I probably even projected this anger onto other people subconsciously. As a result, I found myself more isolated. Ironically, it was in these moments that I most needed comfort, connection, and reassurance from my friends and family.
When I was going through this, I found it so helpful to write down all the reasons I felt angry. That helped me begin to process these reactions to my diagnosis, instead of feeling consumed by the anger. If you’re feeling a lot of anger, only you can know if the anger is making things worse. If so, consider seeking help from a healthcare professional or therapist to help you healthily address this difficult emotion.
In this stage, I began to feel hopeless and found myself “bargaining” with the universe. Others may bargain with any higher power they believe in. I found myself trying to make deals like, “If you make this a misdiagnosis, I promise to take better care of my health,” or “If you make this diagnosis miraculously disappear, I promise I will notice more of the little things and never take my life for granted.”
This is also when I began questioning certain choices or actions and whether they led to my illness. I started to feel guilt and remorse over certain actions.
The most helpful thing for me in this stage was to remind myself that I didn’t cause my chronic illness and I didn’t do anything to “deserve it.” Even if I did somehow contribute to my illness (but I didn’t), I can’t go back and change my actions now, so the best thing I could do was focus on now and moving forward rather than staying stuck in the past.
When my mind started to find a calmer state, I was no longer denying my diagnosis or overwhelmed with anger, and I had stopped trying to bargain with the universe, I started to look at the reality of my situation with more clarity.
As my panic and anger and emotional fog began to subside, my losses felt more present and unavoidable. My tendency was to pull inward as my sadness grew. I began isolating myself, being less social, and reaching out to my friends and family less.
After a few dark weeks spent deep in this depression, I began doing some inner work. I picked up my journal again, began meditating, started talking with a therapist specializing in chronic illness, listened to uplifting podcasts, and learned about mindset. All of these pieces together helped me realize that life could still be beautiful, even with ulcerative colitis. I began seeing ways I could help myself move forward, which felt like a light at the end of the tunnel of a very dark time. I finally had a way forward.
Eventually, after about 2 years, I realized I had found acceptance (but please note that that timeline looks different for us all). Acceptance doesn’t mean I will never again experience pain or struggle, but the pain and struggle does lessen.
I finally began to feel free, instead of feeling like my illness constantly controls my mind and emotions.
I’m now able to be present, think clearly, make decisions that benefit me and my body, and speak kind words to myself. It was at this stage that I finally began to feel free, instead of feeling like my illness constantly controls my mind and emotions.
Some things that helped me achieve this sense of freedom included keeping a journal, practicing mindfulness and self-care, trying to communicate as openly as possible with trusted friends and family, and seeing a therapist. That last one is particularly important if your sense of grief feels all-encompassing, or lasts more than about 6 months.
Perhaps the most important thing I’ve learned is to be kind to yourself as you grieve and know that one day the grief won’t feel as raw as it does now.
Medically reviewed on December 13, 2022
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