Blog

This week, we have a comforting post guest written by an old friend of mine, Doris Dahdouh about self-care through a diagnosis, and will be back soon to share about self care, for caregivers.

Doris brings a diverse background in social work, health coaching, and community engagement. She holds a Master’s in Social Work from Rutgers University and certifications in integrative nutrition and holistic health coaching. Throughout her career, Doris has worked with individuals and families to address challenges, foster resilience, and promote wellness. She is passionate about creating safe, supportive spaces where people can connect, share experiences, and grow together. She has been helping with our peer support meetings for the past few months.

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You’re sitting in a doctor’s office for the I-don’t-know-how-many-th time. The doctor has run the tests. You’ve been poked and prodded. It’s been tough. No one seems to understand you. You don’t even understand you. All you know is that you haven’t been yourself. You’re not even sure what being yourself looks like anymore. It’s been a while since you’ve had a “good” day. Your body seems to be giving out on you. Your mind isn’t too far behind either. What is going on, and how do you proceed? Maybe it’s nothing. Maybe it’s serious. But you won’t know until the doctor tells you. And what if the doctor doesn’t know? When it comes to Histiocytosis, that’s often the case. That uncertainty doesn’t help, especially when your thoughts are running wild. Your emotions may feel unstable, overwhelming. Whatever the diagnosis, it’s important to prioritize self-care—especially when you don’t know what lies ahead. Here are some suggestions to help you focus on self-care. Remember: you are an authentic human being. What works for someone else may not work for you—and that’s okay. Look at the list below and choose what resonates with you, what you think you might enjoy and could practice regularly. If something feels too difficult or unpleasant, skip it. Get creative and find one or two practices that serve you—a beautiful and unique individual. And always consult your medical professional if you’re trying a new exercise, diet, or supplement/medication.

1. Try Deep Breathing

One popular breathing technique is the 4-7-8 method: inhale for 4 seconds, hold for 7, and exhale slowly for 8 seconds. If that doesn’t work for you, try something simpler—close your eyes or sit comfortably, look straight ahead, take a deep breath, and let it out at your own pace. Breathing deeply helps reduce stress and activates the parasympathetic nervous system—your body’s rest-and-relaxation response.
“The sympathetic nervous system controls your body’s stress response. The parasympathetic nervous system controls your body’s rest and relaxation response. When you activate one of these, you suppress the other. This is why deep breathing is so effective at causing the relaxation response.” — Medically reviewed by Gabriela Pichardo, MD (2023). WebMD., (n.d.) What to Know About 4-7-8 Breathing
The University of Toledo adds:
“Deep breathing and relaxation activate the other part of your nervous system, the parasympathetic nervous system, which sends a signal to your brain to tell the anxious part that you’re safe… Deep breathing gets more oxygen to the thinking brain… you are freeing up mental energy to address other symptoms.”— Deep Breathing and Relaxation, University of Toledo Counseling Center, (n.d.) utoledo.edu

2. Check in With Yourself

Ask yourself what you need—in the moment and afterward. Extend yourself grace. It’s okay to not be okay. Remind yourself every morning and evening that you’re doing your best. You may be experiencing pain or discomfort. Your symptoms may be quiet or flaring. Maybe you need to rest. Maybe you need to nudge yourself to get moving. Whatever you need—more of something, less of something else—it’s okay. And if someone doesn’t understand what you’re going through, that’s okay too. You won’t be able to make everyone understand or sympathize with you. Don’t spend your energy trying to. Use that energy on you.

3. Lean on Your People

Choose a few people in your life who you know can support you. Let them know your needs. Be clear when you need extra TLC, want to be left alone, prefer not to be treated differently, or need help with a specific errand or responsibility.

4. Create a Comfort Toolkit

Write down a handful of quotes, affirmations, or statements that comfort or empower you. Memorize them. Write them in a small notebook, post them on sticky notes around your home, or place them in your work or relaxing space. Recite them, believe them, return to them often.

5. Practice spirituality in a way that fits your unique self.

Many people find prayer, reading religious or self-help books, attending spiritual services, spending time in nature, or meditating to be helpful, healing, and comforting. Spirituality looks different for everyone. Whether you connect through quiet reflection, joyful worship, or simply being present with the natural world around you, honoring this part of yourself can bring peace in times of uncertainty. Connecting to a sense of purpose—whatever that may look like for you—can often provide a powerful anchor as you navigate the unknown steps ahead.

6. Stay Connected to Yourself

If you used to enjoy walking and still can—walk. If you loved brunching, dancing, journaling, gaming, movies, or cooking—and you still can—do those things. If you need to cry, cry. If you need a laugh, find something funny to read or watch. If you need alone time, take it.

As unprecedented and unpredictable as a diagnosis can be, it doesn’t define you. It’s just one part of your story—your beautiful story. Robert Frost, a 20th century American poet, reminds us, “The only way out is through.”

Note: If you find it hard to manage your emotions or deal with intrusive thoughts, it may help to work with a mental health professional, spiritual guide, or coach. There are also support groups for many health-related and other challenges. The Histiocytosis Association holds a Peer-to-Peer Histiocytosis Group biweekly on Zoom: Tuesdays, 7–8 PM EST and Thursdays, 6:30–7:30 PM EST. If you’re interested in joining, you can register at the links above.

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Thank you so much Doris. We are thrilled and grateful that you wrote this comforting and practical guide for us. We look forward to the one for caregivers in May.