The Hidden Grief of Chronic Illness
Living with a chronic illness brings challenges most people don't see. There's the physical signs, sure—the symptoms, the treatments, the doctor's appointments. But there's also an emotional weight that's harder to name. It's grief.
We tend to think of grief as something that happens after a single event, like losing a loved one. But grief can also be ongoing, shifting, and tied to losses that keep happening over time. If you've been diagnosed with a chronic illness, you might be experiencing this without even realizing it. Let's talk about what that looks like and how to navigate it.
What Are You Actually Grieving?
Chronic illness doesn't just affect your body. It changes your life in ways that can feel like loss. You might be grieving:
Your physical abilities. Maybe you can't do the things you used to do, or you're increasingly relying on others for help. That shift can be hard to accept.
The life you imagined. You had plans, dreams, and possibilities mapped out. Chronic illness can force you to let go of some of those and reimagine what your future looks like.
Your social life. If your illness limits your ability to participate, you might feel disconnected from friends or left out of events.
Your sense of identity. A chronic illness can shake your fundamental ideas about who you are and who you'll be. It's normal to feel a profound sense of sadness about that.
Why This Grief Goes Unrecognized
Part of what makes this so hard is that we don't have great language for ongoing grief. People around you might not understand what you're going through, and the things they say can miss the mark.
You've probably heard things like "at least it's not worse," "everything happens for a reason," or "you're so strong." These platitudes don't feel validating. They can make you feel even more isolated because they gloss over the real pain you're experiencing.
You might also feel pressure to be grateful for what you do have. But that's just toxic positivity. It makes you feel guilty for not being happy all the time, which only adds to the weight you're carrying.
What You Can Do
Acknowledge what you're going through. This grief is real, even if it's hard to explain to others. Start by validating your own feelings. Don't judge yourself or blame yourself for what you're experiencing.
Try journaling. Writing can give you space to say anything you need to without worrying about how it sounds. It can also help you notice patterns in your thinking and feeling, which can be useful as you work through this.
Consider joining a support group. Nobody understands what you're going through quite like other people in the same situation. Being able to talk with people who are dealing with similar physical and emotional challenges can help you feel seen and validated. You'll realize you're not alone.
Find new ways to define your identity. You don't want your illness to be everything you are. If you've had to give up parts of your life to accommodate your health, it's okay to explore new things that bring you joy. Find ways to express yourself creatively or other activities that get you through the day.
When to Talk to a Therapist
If this grief feels overwhelming, talking to a therapist who specializes in grief or depression therapy can help. They can help you find new ways to accept your situation and who you are now. Therapy isn't about "getting over" your grief—it will help you learn to live with it in a way that doesn't take over your life.
At Heads Held High Counseling, we understand how complicated chronic illness grief can be. If you're struggling with these feelings, we're here to help. Reach out today to schedule a free consultation and take the first step toward feeling more grounded.
About the author
Will Dempsey, LICSW, is a mental health therapist and the founder of Heads Held High Counseling, based out of both Boston and Chicago. Will is a gender-affirming LGBTQ+ practitioner who sees individuals looking to overcome anxiety, depression, and trauma. He often uses EMDR, IFS, CBT, and expressive arts to assist his clients. All sessions are offered exclusively online.
