Grief Awareness Month: 

Honoring the Losses That Come With Rare and Chronic Disease

Every August, Grief Awareness Month invites us to talk openly about a topic many people would rather avoid. For the rare and chronic disease community, grief is especially complicated — it doesn’t only arrive after a loved one passes away. It can begin the moment a diagnosis is given, and it can return again and again as a condition changes over time. This month is a good time to name that experience, and to make sure patients and caregivers know they don’t have to carry it alone.

What is Anticipatory Grief

When people think of grief, they usually think of it as something that follows a death. But for many patients and caregivers, grief starts much earlier. Living with a rare or chronic illness often means grieving:

• The life, career, or future you had imagined before diagnosis
• Milestones that may look different than expected
• Independence, mobility, or abilities that change over time
• The person your loved one used to be, even while they’re still here
• Uncertainty itself or not knowing what’s coming next

This is sometimes called anticipatory grief or ambiguous loss: mourning something (or someone) that hasn’t fully disappeared, but hasn’t stayed the same either. It’s a real and valid form of grief, even though it doesn’t come with a funeral or a clear “before and after.”

Grieving a New Diagnosis

Receiving a rare or chronic disease diagnosis — for yourself or for someone you love — can feel like the ground shifting beneath you. It’s common to move through emotions similar to the traditional stages of grief: shock, denial, anger, sadness, and eventually some form of acceptance. There’s no “right” way to feel, and there’s no timeline you’re supposed to follow. Some days may feel manageable, and others may bring the loss back to the surface all over again, even years later. That back-and-forth is a normal part of living with a long-term diagnosis, not a sign that something is wrong with how you’re coping.

Grieving the Loss of a Loved One

For those who lose a loved one to a rare or chronic disease, grief can carry extra weight. Caregivers often spend months or years anticipating this loss, which can bring a confusing mix of sadness, exhaustion, guilt, and even relief once the caregiving role ends. All of these feelings can exist at once, and none of them make you a bad caregiver or a bad person. Grief after a long illness doesn’t always look like grief after a sudden loss and that’s okay.

When to Seek Extra Support

Grief can be heavy enough on its own, but sometimes it can start to feel unmanageable. It may help to talk with a counselor, grief specialist, or your doctor if you notice:

• Grief that feels like it’s getting heavier instead of easing with time
• Trouble functioning in daily life for an extended period
• Feeling completely isolated from friends, family, or support systems
• Overwhelming feelings of hopelessness

Reaching out for support isn’t a last resort; it’s simply part of taking care of yourself, the same way you’d care for any other part of your health.

Trusted Resources for Patients and Caregivers

You don’t have to navigate grief alone, and you don’t have to search for support by yourself either. These organizations offer trustworthy, specialized resources for the rare and chronic disease community:

• Global Genes — a rare disease advocacy organization offering grief resources and community support specifically for rare disease patients and families
• Family Caregiver Alliance — practical guidance on grief and loss related to chronic illness caregiving
• National Hospice and Palliative Care Organization (NHPCO) — bereavement resources and help finding local grief support services
• CancerCare — free professional grief counseling and support groups for anyone affected by cancer, including caregivers
• 988 Suicide & Crisis Lifeline — free, confidential support available 24/7 by call or text to 988, for anyone who is struggling emotionally

How Accessia Health Fits In

Grief and the financial strain of a rare or chronic diagnosis often go hand in hand. At Accessia Health, we understand that caring for your emotional wellbeing is just as important as managing the practical, financial side of a diagnosis — and that reducing one source of stress can make it easier to face the other. While we’re not a grief counseling service, our team works to lighten the load in the ways we can: helping patients and families access financial assistance for copays, premiums, and other out-of-pocket costs tied to a chronic or rare condition, so there’s a little more room to focus on healing.

Learn more about our patient assistance programs and how to get started.