National Grief Awareness Day is a good time to recognize a kind of grief that is often hard to describe.
For those who have PANS and PANDAS and for the families who care for them, it is possible to feel grief together with hope, treatment, advocacy, progress and an amazing determination to carry on. One can be very thankful towards the person present before them and at the same time grieve the things that the illness has taken away from them and from us.
Some families in our community have lost loved ones. PANS and PANDAS can cause serious symptoms, including suicidal thoughts and actions, and sadly, some families have lost children and adults to suicide. On this day, we remember them. We offer support to the families, friends, and communities living with these losses, and honor the lives that were much more than the illness.
Patients may grieve a childhood that did not look like their friends’ childhoods. School years interrupted by illness. Friendships that changed or disappeared. Sports, music, activities, independence, or milestones they expected to reach. For some, it is college that never happened, or happened very differently. For adults, it may be education, careers, relationships, parenting, independence, or years of adult life shaped by an illness they did not expect.
Parents grieve too. We feel sorrow for what our children have endured, whether they are six, sixteen, or thirty-six. We grieve the experiences they missed and the things that became so much harder than they should have been. And sometimes we grieve for ourselves, for the version of parenthood and family life we once assumed we would have. This does not mean we love our children any less, wish they were different, or have stopped fighting for their health and future. It simply means that two things can be true at once: we can fully love who we are now, while also seeing what illness has taken from us.
Some losses are marked by ceremonies and sympathy, but others happen quietly over years, and few people notice them. The post that inspired this reflection talked about grieving someone who is still alive, mourning a future that never happened, and carrying losses others might not understand. These feelings are common in the PANS/PANDAS community.
National Grief Awareness Day provides an opportunity to recognize this grief, but for many patients and their families it is not something that occurs just once a year. It may show up on a regular Tuesday, at the start of another school year, when friends go to college, at a birthday or at a graduation, during a flare-up, or simply through the quiet recognition of how much life has changed. For families who have lost someone they love, that grief then becomes a part of their everyday lives.
We keep living, loving, advocating, seeking treatment, celebrating progress, and looking to the future, even as we carry these losses. National Grief Awareness Day gives us a chance to recognize what we often carry quietly and to make room for the grief that is part of daily life for many in our community.
Making Space for Grief
People with PANS or PANDAS often focus on what comes next, like the next appointment, treatment, school meeting, flare-up, insurance appeal, accommodation, or trying to fix what the illness has changed. There is rarely time to stop and notice what has already been lost. We do not have to stop hoping for recovery or looking to the future just because we feel grief. Sometimes, grief just needs to be recognized.
For patients, this might mean accepting the years, experiences, relationships, opportunities, or parts of themselves they have missed. They might say, “I am happy that I am improving,” but still feel angry or sad about what happened. Moving forward does not erase the past.
Parents and caregivers may also feel grief for their children and for themselves. We can see that caregiving has changed our lives, without making our children feel those losses. We can love them completely and still miss the family life, relationships, careers, freedom, or sense of security we once had.
There is no single way to deal with grief. Some people find it helpful to talk, write, make art, spend time in nature, return to something they once loved, or mark an anniversary, even if no one else knows its meaning. Others need the company of people who understand without trying to fix things. Professional help can also make it easier to cope with grief that feels too heavy to carry alone.
Sometimes, making space for grief is as simple as letting ourselves name what we have lost, without immediately reminding ourselves to be grateful for what remains.
Gratitude and grief don’t cancel each other out, nor do hope and grief. We can keep seeking treatment, advocating, rebuilding, celebrating progress, and imagining a new future, even as we mourn parts of the past. There is room for all of it, even if we have to deliberately make the room. Give yourself grace to do so.
Gabriella True
