When we talk about chronic conditions like IBD, fibromyalgia, or arthritis, we often focus on the physical side – the surgeries, medications, and scans. But there’s a massive emotional weight that comes with these diagnoses that we don’t always give enough space to.

I want to talk about grief. It’s a word that’s usually associated with losing someone, but when you are diagnosed with a lifelong condition, there’s still a grief process. You are grieving the loss of your healthy self, the past version of you in your best memories, and the future version of you and the life you thought you’d have.

Where do these theories come from?

The most well-known theory about grief comes from a psychiatrist named Elisabeth Kübler-Ross. In her book, On Death and Dying, she introduced what we now call the five stages of grief. Originally, these stages were meant for people who were terminally ill, but over the years, we’ve realised that they apply to almost any major life-changing loss, including chronic illness. There are other theories, including one that lists seven stages, but for this article, we’ll be focusing on five.

The five stages are:

• Denial: Feeling like the diagnosis must be a mistake or that it isn’t as serious as the doctors say.
• Anger: Feeling a deep sense of unfairness. “Why me?“
• Bargaining: Trying to make deals, like “If I just eat perfectly, then the disease will go away.”
• Depression: The heavy realisation of the situation and the impact on your future.
• Acceptance: Not necessarily being happy about the situation, but reaching a point where you are ready to move forward with your new reality.

Applying the stages to our reality

In our community, these stages don’t always happen in order. For example, I’ve experienced sadness and anger beyond what I can put into words at different points in my 12-year journey. You might feel acceptance after a successful surgery, only to be thrown back into anger when a new flare hits or you develop a secondary condition like fibromyalgia.

This is often tied to the biopsychosocial model of pain – our experience is a mix of biological, psychological, and social elements. If we are stuck in a stage of anger or depression, it can keep our nervous system in a state of stress, which actually makes our physical health worse!

Ultimately, my understanding of this is the premise that we grow through what we go through, and this has certainly been the case for me. This essentially just means that by experiencing, processing, and enduring tough times, you learn to manage future challenges and build emotional stability. Psychologists call the ability to grow from adverse experiences post-traumatic growth.

Grief is not a straight line

The most important thing I’ve learned is that recovery and grief are not straight lines. You might have to recover from the same loss over and over again as your condition changes. It’s not a failure to feel these things; it’s a natural response to a very difficult situation.

By acknowledging these stages, we can start to make the invisible a little more visible and give ourselves the compassion we deserve.

How are you doing with these stages at the moment? Do you find yourself moving back and forth between them? Let me know in the comments! 💜✨