When we talk about Systemic Lupus Erythematosus (SLE), we often focus on the physical: joint pain, the butterfly rash, the organ involvement, and the endless lab results. But there is a silent, heavy shadow that follows a lupus diagnosis that I rarely discuss in the doctor’s office: Grief.
Specifically, I grieve for the person I was—or thought I was—before my body became a battleground.
For me, that “old self” was a woman who saw a limitless career path and believed that “pushing through” was the answer to everything. When lupus finally took centre stage, I didn’t just lose my health; I felt like I was losing my identity.
The Person in the Rearview Mirror
Looking back, it’s easy to tint those pre-diagnosis years with rose-coloured glasses, even if the reality was far more nuanced. The truth is, I never truly possessed the effortless energy I saw in others. While I craved spontaneity, it was always a hostage to my energy levels, even then.
In those days, making plans wasn’t about managing a “flare”—it was simply a hopeful gamble. I lived in a constant state of making commitments and quietly wishing my body would grant me the strength to follow through on them, never knowing that the fatigue I was fighting already had a name. That realisation is a loss, and it deserves to be mourned.
The Stages of Chronic Illness Grief
Grief isn’t just for the loss of a loved one; it’s for the loss of a lifestyle and the expectations I had for my future. I found myself moving through these stages:
- Denial: Trying to ignore the symptoms and pushing my body to do what it used to do (like my post-diagnosis triathlon sprint).
- Anger: Resenting the “but you don’t look sick” comments and feeling frustrated that my body had “betrayed” me.
- Bargaining: Thinking, “If I just eat this specific diet or take this supplement, I’ll be that energetic person again.”
- Depression: The isolation that came when I realised my old social life or career pace was no longer sustainable.
- Acceptance: Reaching the point where I stopped fighting my reality and started working with it.
The Trap of Comparison
The hardest part of grieving my old self was that the “old me” was my only benchmark. I compared my current days to the days when I was just “regular tired.”
But here is the truth I’ve learned over 18 years: Comparison is the thief of healing. When I constantly measured my present limitations against my past capabilities, I missed the incredible strength I was showing right now. The version of me that navigates a flare is arguably much tougher than the version of me that was just hoping for enough energy to make it through a dinner date.
Finding the “New Me” Through Self-Love
It took me twelve years, a failed relationship, and a major hospitalisation to realise that I couldn’t go back to that “hopeful gamble” way of living. I had to stop trying to resurrect my old self and start introducing myself to the woman I am today.
Building self-love has meant:
- Forgiving my body for its limitations.
- Setting boundaries with people who don’t understand my energy levels.
- Finding new passions that accommodate my health—like building this community of Lupies.
I’m Still Working This Out
After 18 years, I still miss parts of the life I thought I would have. My career, the plans I wanted to make, and the sense of purpose that came with them. Some days I can accept how things have changed. Other days, I’m frustrated and wish they hadn’t.
I don’t think I need to turn that into a story about being stronger. I’m learning what matters to me now, what I can manage, and how to value myself when those things look different from what I expected.
Writing here is part of that. It gives me a way to share what I’ve kept to myself and connect with people who may understand. It doesn’t make everything okay, but it matters to me.
I can miss my old life and still want to make something of the life I have now. I’m still working out what that looks like.