Little Hope Notes

Chronic illness brings many things into your life—pain, exhaustion, uncertainty. But one thing that doesn’t get talked about enough is grief.

Grief isn’t just about losing a person; it’s about losing a version of yourself you thought you’d always have. It’s about mourning the life you planned, the dreams that feel out of reach, and the simple things you never thought you’d have to give up.

And the hardest part? This kind of grief doesn’t come in a single wave that you work through and move on from. It’s cyclical. Some days, you’ll be okay. You’ll find ways to adapt, to enjoy life in new ways. Other days, the loss hits you out of nowhere—when you have to cancel plans, when your body betrays you, when you realize how much has changed.

I know this grief well. I’ve felt it in my bones, in my heart, in the spaces where my old life used to fit. And if you’re feeling it too, I want you to know: you are not alone.

The Layers of Chronic Illness Grief

Grief isn’t just one big emotion—it’s layered, complex, and deeply personal. When you live with chronic illness, the grief comes in waves, touching different parts of your life in ways you never expected. It’s not just about feeling unwell; it’s about losing pieces of yourself, your independence, and the future you once imagined. Here are some of the biggest layers of grief that many of us navigate on this journey.

Mourning Your Old Life

Before chronic illness, I was someone else. I moved through life without constantly checking in with my body, without wondering if I’d have the energy to get through the day. I didn’t have to plan every outing around how much pain I’d be in.

Losing that version of myself was devastating. I grieved the ability to be spontaneous, to say “yes” without hesitation, to not have to calculate every step.

Maybe you feel that too. Maybe you miss the version of you that didn’t have to worry about how much energy a simple task would take. And that’s okay. It’s okay to miss her. It’s okay to grieve her.

But here’s something I’ve learned: Even though I am different now, I am still me. Chronic illness has changed me, but it hasn’t erased who I really am.

The Loss of Certain Dreams

There are dreams I’ve had to let go of—or at least, reshape into something new.

Maybe you always pictured yourself traveling the world, building a demanding, yet fulfilling career, running marathons, or being the kind of parent who could play with full abandon with your kids. Maybe you thought your life would look one way, and now it’s completely different.

That hurts. And it’s okay to sit with that pain. But here’s something else: letting go of one dream doesn’t mean you won’t find new ones.

I’ve had to adjust my expectations, to find joy in smaller things, to build a life that works for me instead of mourning the one I thought I’d have. It’s not easy. But it’s possible. I’m still learning this and believe I always will be.

Grieving How Others See You

One of the hardest things about chronic illness is how isolating it can feel. People don’t always understand what we go through. Some minimize our pain. Some disappear. Some mean well but say things that hurt.

It can be heartbreaking to realize that the people in your life may not show up the way you hoped they would.

But I’ve also learned that grief clears space for something else—better, deeper, truer connections. The people who stay, who listen, who make an effort to understand? Those people are gold.

Finding Hope in the Midst of Grief

Chronic illness grief is real, and it’s valid. But here’s the thing: grief and hope can coexist.

Even in the hardest seasons, I’ve found moments of light. I’ve learned to appreciate things I once overlooked. I’ve built deeper relationships with the people who truly see me. I’ve found strength in myself that I never knew existed.

If you’re in the thick of it right now—if you’re grieving, if you’re tired, if you’re not sure how to move forward—just know this:

You are still here. You are still you. And your life, even with its limitations, still holds so much beauty.

It’s okay to grieve. But don’t forget to look for the good, too. Because it’s there, waiting for you. 💛

---

Mental Health Resources

• My Endometriosis Team for endometriosis resources and a supportive community.
• 988 Lifeline for the USA Suicide & Crisis Helpline (call or text)
• Calm App for daily meditations, sleep stories, and affirmations.
• Talkspace for affordable, flexible talk therapy.
• Self Care Is For Everyone for wearing affirmations and kind reminders to get you through the day. 🧡