Blog

By Doris Dahdouh MSW, LSW, INHC, LMSW
Peer Support Moderator

As March comes to an end and we begin to settle more fully into spring, I’ve found myself reflecting on this past winter. I wonder, what has winter felt like for so many of us? Has it been the same? Has it been different? Are we the same… yet different?

It was long. It was heavy. At times, it felt never-ending. Many of us experienced changes and adjustments. There were colder days than expected, storms that came and passed—only for the
next one to begin brewing. There were days that felt darker than usual, nights that stretched on, and moments where we quietly wondered: Will this pass? Will I feel warmth again? Will there be
color beyond the gray? Is something new, something beautiful, on the horizon?

And yet… here we are.

When we think about spring, we often think of awakening—renewal, birth, even rebirth. But what we don’t always consider is what comes before that: the quiet work, the unseen work, the necessary work.

Planting becomes essential. Because long before anything blooms, something has already been happening beneath the surface. Seeds have been planted, sometimes intentionally, sometimes without us even realizing it. There may have been planning, imagining, or simply hoping for something different… something more.

And then came the waiting. The stillness. The not knowing.

But stillness is not the absence of growth.

Like the caterpillar in its cocoon, what appears to be rest is actually transformation. Or like the
sap in a tree, quietly moving what is needed—water, nutrients, life—preparing for what’s to
come. Growth doesn’t begin when we see the bloom. It begins underneath, in the hidden places.
And in many ways, this is what living with histiocytosis (or any rare or chronic condition) can
feel like.

There are seasons when your body asks you to pause. To rest. To step back. Times when life feels like it has slowed down, or even stopped. But what if that pause is not a setback, but a
necessary part of your process? A kind of hibernation. A retreat. A gentle rebuilding of a new version of you.

So what do you do? How do you move forward?

First, allow yourself to grieve. Because the truth is: you didn’t choose this. It’s okay to feel sad, frustrated, even angry. It can feel unfair. It can feel exhausting. And sometimes, it can feel defeating. Those feelings are real, and they deserve space.

Then, slowly, begin to nurture yourself. Give yourself the rest you need (not just physically,
but emotionally and spiritually). You learn how to care for yourself in a new way, almost as if you are caring for a child, with tenderness, patience, and compassion.

In many ways, you are becoming someone new. And like any growth process, it takes time. You learn. You adjust. You soften. You rebuild. And eventually—when you’re ready—you begin to stand again. Maybe not in the same way as before, but in a way that is grounded, aware, and deeply rooted in everything you’ve been through.

And here is the gentle reminder I hope you hold onto: your blooming season is coming. It may not look like what you once imagined. It may be quieter, slower, or different in ways you didn’t expect. That doesn’t make it any less beautiful.

Because just like the tree in winter, you were never truly still. Even in the hardest moments, growth was happening. And in your own time, in your own way, your seeds, your strength, your healing, your resilience… will rise. And they will bloom.

And as you continue moving through your own season—whatever it may look like—please
remember that you don’t have to do it alone. Whether you are a patient, a caregiver, or a loved one, there is space for you to be seen, heard, and supported.

Our Peer Support Groups and Caregiver Support spaces are here to offer connection,
understanding, and a place where you can simply be—exactly as you are. If and when you feel ready, we invite you to join us. Sometimes, healing begins with being witnessed.

For more information about our support groups and how to get connected, please visit:
https://histio.org/resource-overview/peer-connection/