Grieving Your Old Self: The Emotional Impact of Lupus

When we talk about Systemic Lupus Erythematosus (SLE), we often focus on the physical: the 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 we rarely discuss in the doctor's office: Grief.

Specifically, we grieve for the person we were—or thought we were—before our 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 center 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-colored 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 realization 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 we had for our future. You might find yourself moving through these stages:

• Denial: Trying to ignore the symptoms and pushing your 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 your body has "betrayed" you.

• Bargaining: Thinking, "If I just eat this specific diet or take this supplement, I’ll be that energetic person again."

• Depression: The isolation that comes when you realise your old social life or career pace is no longer sustainable.

• Acceptance: Reaching the point where you stop fighting your reality and start working with it.

The Trap of Comparison

The hardest part of grieving your old self is that the "old you" is your only benchmark. We compare our current days to the days when we were just "regular tired."

But here is the truth I’ve learned over 13 years: Comparison is the thief of healing. When we constantly measure our present limitations against our past capabilities, we miss the incredible strength we are showing right now. The version of you that navigates a flare is arguably much tougher than the version of you that was just hoping for enough energy to make it through a dinner date.

Finding the "New You" 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 means:

• Forgiving your body for its limitations.

• Setting boundaries with people who don't understand your energy levels.

• Finding new passions that accommodate your health—like building this community of Lupies.

You Are Still Here

Grieving your old self doesn't mean you are giving up; it means you are making room for a new, more resilient version of yourself to grow. You might not be running triathlons, but you are surviving a daily marathon that most people can't even imagine.

To my fellow Lupies: It’s okay to miss who you used to be. It’s okay to cry for the life you thought you’d have. But don't stay in the past for too long—the version of you that exists today is brave, powerful, and worthy of love.