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How to Prioritize Self-Care When Your Loved One’s Diagnosis Gets Overwhelming
This is the caregiver and family/friend guide to self-care, you can find the self-care as a patient guide here.
“Self-care is not a waste of time. Self-care makes your use of time more sustainable.”
—Jackie Viramontez
By Doris Dahdouh, MSW, LSW, INHC
How can you think about anything else? You just heard that your loved one—someone very dear to you—has been diagnosed with something unheard of. What makes it worse, or scarier, is that most of the time, you can’t even pronounce or spell it. What does it mean? What does this mean? Everything suddenly feels different. It’s odd because when you look around, everything looks the same. You are still the same. Your loved one is still the same.
But—will your loved one change? Is your relationship, as you know it, about to shift?
A range of emotions is likely running through your mind. How can we beat this? What can we do? Even though it’s not your diagnosis, you’ve joined them on this journey. That’s why taking care of yourself is so important. You may become their caretaker. Your work-life balance may be about to change. You can’t help but see your loved one differently—and that may vary, depending on whether they are experiencing symptoms, if you have healthy communication, or if one of you tends to operate in denial. Suppressing emotions increases stress and leads to health risks. Katherine Cullen, MFA, LCSW, explains:
“Individuals who suppress their emotions feel less socially connected and satisfied with their friends. They’re also more likely to experience anxiety, depression, and other mental health issues. Suppression tends to bring higher risks of heart disease and hypertension… Because a major function of emotions is to communicate our internal states with others.”
—“Suppressing Emotions Can Harm You—Here’s What to Do Instead,” Psychology Today, December 23, 2022, https://www.psychologytoday.com/us/blog/the-truth-about-exercise-addiction/202212/suppressing-emotions-can-harm-you-heres-what-to-do
No matter what is happening, you are about to encounter something different—something unfamiliar. That’s why creating a sense of routine for self-care is so important. Here are some suggestions to help you through:
1 – Express your emotions.
Find someone other than your loved one to talk to freely and openly. This might be a friend, family member, mental health professional, coach, or spiritual guide. It’s important to “let it out”—keeping everything bottled up in the name of “being strong” doesn’t help. Be strategic. Journal by hand or typing. Record voice memos just to vent. Write letters and save them in a box—or rip them up later and throw them out.
2 – Take moments for yourself, even if you are the only caretaker.
Maybe it’s when they’re sleeping, while making a meal, or while they’re in treatment. Use these windows to breathe deeply, write, walk, dance, sing, exercise, read, nap, cry, laugh—whatever you need. Even in five-minute increments, carve out those moments.
3 – Remind yourself what you’re grateful for.
Whether it’s waking up, enjoying a great sandwich, or not struggling in some particular way, gratitude matters. Try not to view everything in absolutes. Everything is not all bad.
We tend to list what’s wrong more than what’s right. Flip the script:
Make a gratitude list in a notebook, take mental notes throughout your day, or end conversations by naming one thing you’re thankful for.
4 – Eat as healthfully as possible and rest whenever you can.
Hydration is key. Start small. Begin your day with a couple of glasses of water (or lemon water). Add a leafy green to one meal. Sleep as much as possible. Don’t overwhelm yourself—just begin.
5 – Extend grace when you don’t get everything done.
You’re human. You cannot do it all—nor were you meant to. It’s okay if you don’t check every box on your to-do list, or even if you mess up. Allow for human error. Don’t hold yourself to an unrealistic or harmful standard. It’s okay. You are okay.
6 – Practice spirituality in a way that fits your unique self.
Many people find peace and comfort by connecting to something greater than themselves. Spiritual practice looks different for everyone. Whether it’s attending services, prayer, meditation, walks in the woods or near water, reading religious texts, or listening to spiritually focused podcasts—find what works for you, and try to incorporate it into your life.
It’s never easy to think of yourself when someone you love is going through something serious—especially when it’s scary or uncertain. You may feel the need to be fully and totally present for them. On top of that, fears of losing your loved one or financial concerns related to treatment can feel overwhelming. Managing your emotions will help you think more clearly and make better decisions—for both you and your loved one. I often remind people: A healthy you is a healthy them.
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 bimonthly 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.