Blog

By Doris Dahdouh, MSW, LSW, INHC | Histiocytosis Peer Moderator

Structure.

It’s not a word most people get excited about, but deep down, many of us know how much we need it. Structure keeps us focused and helps us stay on top of things. It organizes our thoughts, our days, and our to-do lists. It helps us feel accomplished and gives us something steady to hold onto—even if we’re only holding ourselves accountable.

I bring this up because the summer months—especially July and August—can feel unstructured, chaotic, or just… different. And while many people look forward to summer all year, it’s not always easy to get a routine going that works for you—especially if you’re navigating something more complex and rare like histiocytosis.

So how do we manage it all? How do we take care of ourselves when everything around us feels fast-paced and exciting, but maybe our bodies or energy levels aren’t on the same page?

That’s where having a personal aim or intention makes a big difference. In 12 Rules for Life: An Antidote to Chaos, Jordan B. Peterson puts it well:

“An aim, an ambition, provides the structure necessary for action. An aim provides a destination, a point of contrast against the present, and a framework, within which all things can be evaluated. An aim defines progress and makes such progress exciting. An aim reduces anxiety, because if you have no aim everything can mean anything or nothing, and neither of those two options makes for a tranquil spirit.”

Summer can feel like a blur if we’re not intentional. And let’s be honest—living with histiocytosis already demands a next-level ability to expect the unexpected. So while others may be caught up in summer fun, you might be balancing treatments, fatigue, or just needing more rest. That’s okay. You are doing what you need to do.

Here are a few things I’ve learned along the way—especially during the summer—that have helped me (and others in our community) stay centered:

1. Be Gentle with Yourself

You might not make it to every event, party, or outing you had planned. You might feel off or just decide you don’t have the energy. And guess what? That’s perfectly okay. You’re allowed to cancel. You’re allowed to change your mind. The people who really see you—really see you—will understand. And if they don’t, that’s not your responsibility.

2. Set a Grounding Routine

Structure doesn’t have to mean a packed schedule. Start with something small: waking up at a certain time, stretching for five minutes, spending a few quiet moments in prayer, journaling, or sipping a peaceful cup of tea. Even five or ten minutes in the morning can help you feel grounded for the rest of the day. Make this time non-negotiable—it’s for you.

3. Map Out Your Week on Sundays

If you can, spend a few minutes every Sunday writing out what your week looks like. Plug things into your calendar—appointments, errands, even rest days. That way, your mind isn’t spinning trying to remember everything. Be flexible though. If you need to adjust things or rest more than planned, that’s okay. And sometimes the best moments come from spontaneous invites!

4. Get Your Sleep

Try not to mix too many late nights with early mornings—especially if you’re already running low on energy. Sleep plays a huge role in how we heal, manage stress, and function overall. Don’t underestimate how much rest your body needs, especially when managing histiocytosis.

5. Speak Kindly to Yourself

This one is big. Be mindful of the words you say to yourself. We can be so hard on ourselves without realizing it. So, when you’re feeling down or frustrated, talk to yourself like you would to a young child—one who is learning and trying and doing their best. Because truthfully, that’s what we’re all doing, no matter our age.

The summer months don’t have to be perfect to be meaningful. Even when the heat gets intense or your plans change, you can still enjoy the season in your own way. Focus on what you can control and try not to cling too tightly to what you can’t. Set your sights on something—big or small—that gives your days a sense of direction. Smile when things are tough. And let yourself really feel the joy when things are going beautifully.

Remember: You got this. One step, one breath, one smile, one day at a time.