Being a caregiver is a challenging role, but when you’re balancing your own chronic illness while caring for a spouse with another rare disease, the challenges intensify. I live with Ehlers-Danlos Syndrome (EDS), a rare connective tissue disorder that leads to chronic pain and physical limitations, while my husband, Dexter, has Fanconi Anemia (FA), a genetic disorder that makes him susceptible to various cancers and other health complications. Together, we navigate this journey in what I like to call a mutual care-partnering, and over the years, I’ve learned some key lessons about how to take care of myself while also caring for him. These insights have been crucial not only for our physical health but also for maintaining our emotional and spiritual well-being. I hope that sharing them can help other caregivers who are dealing with similar circumstances.

1. Spiritual Well-being: The Foundation of Caregiving

For me, everything begins with my spiritual well-being. Living in chronic pain means that I am constantly battling both physical and emotional challenges. To stay grounded, I prioritize daily moments of reflection and spiritual rejuvenation. Singing songs that uplift me, reading Bible verses aloud, and spending time in silent prayer all help me maintain my focus and regain strength when I feel worn down.

Being truthful with God and myself is essential, as is letting my faith carry me through difficult times. No matter how overwhelming my caregiving responsibilities may feel, I’ve learned that nurturing my relationship with God strengthens my ability to care for both myself and Dexter.

2. Taking Care of Your Physical Health: It’s Not Selfish, It’s Necessary

One of the most common struggles for caregivers is feeling guilty about taking time for themselves. But for those of us who live with conditions like EDS, maintaining our own physical health is absolutely crucial if we want to continue caring for others.

For me, this includes regular visits to the hair and nail salon—not just for self-care, but also because improving circulation is important for my condition. I’ve learned that seemingly small acts of self-care can actually have significant benefits for my physical well-being.

Additionally, it’s important to stay on top of my medical appointments—rheumatology, cardiology, chiropractic care, and physical therapy all play a vital role in managing my EDS. Prioritizing these appointments is just as important as taking Dexter to his many medical visits.

3. Mental Health Matters: Hobbies, Pets, and Exercise

Living with a chronic illness while also caring for a loved one can take a toll on your mental health. That’s why it’s essential to make time for hobbies that bring you joy and peace. For me, painting and writing have been therapeutic outlets. These activities allow me to focus on something outside of our health issues and keep my mind engaged in a creative and positive way.

Additionally, spending time with my emotional support animal (ESA) and making time for gentle exercise are crucial to maintaining my mental and emotional health. Whether it’s taking a short walk or simply sitting outside for a few moments, these small acts can make a big difference.

4. Giving Yourself Grace and Letting Go of Guilt

Caregiving is exhausting, and it’s easy to feel overwhelmed by guilt—especially when you’re not feeling up to taking care of your spouse or when you need time for yourself. But it’s so important to give yourself grace and realize that it’s okay to need a break. As caregivers with rare diseases, we already have an extra load to carry, and it’s critical that we don’t add guilt to that burden.

One of the hardest lessons I’ve had to learn is to silence that inner voice that says, “You’re not doing enough.” That voice will wear you down, and you have every right to push back and say, “Shame on it for shaming me.”

“He gives us beauty for ashes,

Strength for fear,

Gladness for mourning,

& Peace for despair.” – (Isaiah 61:3)

Over-apologizing is another trap many caregivers fall into, but it’s important to remember that needing self-care is not a weakness—it’s a necessity. We can’t pour from an empty cup, and if we don’t take care of ourselves, we won’t be able to care for our loved ones either. This is why learning to take a step back and breathe is so important.

5. Cognitive Behavioral Therapy: A Lifeline for Caregivers

For those who struggle with processing these emotions and dealing with the challenges of caregiving, I highly recommend Cognitive Behavioral Therapy (CBT). It’s particularly helpful for those who have experienced any form of trauma or abuse or who live with conditions like ADHD or Autism. CBT teaches practical skills for managing overwhelming emotions, developing healthier thought patterns, and coping with the stresses of caregiving. It can be a true lifeline for caregivers who feel lost in the challenges of balancing their own health with the needs of their loved ones.

Final Thoughts: The Importance of Self-Care for Caregivers

Caregiving is one of the most rewarding yet difficult roles a person can take on—especially when both caregiver and patient are living with rare, serious diseases. Learning how to care for yourself while caring for a loved one is not easy, but it’s absolutely necessary. It’s not selfish to put your own health and well-being first, and doing so will actually make you a better caregiver in the long run.

If you’re a caregiver with a rare disease, know that you are not alone. Give yourself the grace to rest when you need it, reach out for support, and don’t hesitate to seek professional help if you’re feeling overwhelmed. Taking care of yourself is the best way to ensure that you can continue to care for your loved one.

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