Supporting Caregivers of EDS Patients:
A Compassionate Guide

Caring for someone with Ehlers-Danlos Syndrome (EDS) can be an emotionally and physically demanding role – to completely understate it. Please know that as a caregiver, you provide crucial support to your loved one, but it’s equally important to look after your own well-being. Start by reading this guide from EDS Awareness on how to help your EDS caregiver for ideas.

One of our advisory board members, Christie Cox, shares her 7 Step Recipe for EDS Caregivers with the following key concepts to know:

“Always remember, as a caregiver, your support and understanding are as vital as their medical care.”

• “Do not underestimate your role and the importance of acknowledging their struggles, celebrating their victories, and how they can positively or negatively impact their chronic illness journey.”
• “You’re not just a support system but a key player on their healthcare team. Handle the responsibility with great care. And please always remember to prioritize your OWN self-care, too.”
  

Caregiver Navigating EDS Tips

The below general tips offer practical advice, resources, and tools to help you navigate the unique challenges of caregiving.

1. Understanding EDS
EDS is a group of connective tissue disorders that affect joints, skin, and blood vessels, often leading to chronic pain, fatigue, and frequent injuries. Knowing the basics of EDS and its comorbidities—such as POTS (Postural Orthostatic Tachycardia Syndrome) and MCAS (Mast Cell Activation Syndrome)—can help you provide more informed care. Visit the EDS Society for a more comprehensive overview by the world’s largest supporting nonprofit dedicated to EDS.

2. Prioritize Self-Care
As a caregiver, it’s easy to overlook your own needs. However, caring for yourself is essential to being able to care for someone else. Make time for activities that recharge you, even if it’s something simple like a 10-minute break or a relaxing bath. The Family Caregiver Alliance offers self-care resources tailored to your needs.

3. Build a Support Network
No caregiver should feel isolated. Surround yourself with people who understand your situation, whether through family, friends, or online communities. Platforms like EDS Awareness offer support groups where you can connect with others in similar situations.

4. Set Boundaries
It’s important to set boundaries to prevent burnout. You cannot do everything, and it’s okay to ask for help. Have open conversations with your loved one about what you can realistically provide, and seek additional support when needed. CaringBridge can help you organize help from your community and keep them updated.

5. Use Tools and Resources
Numerous resources can help streamline caregiving tasks:

• Medication Management: Use apps like Medisafe to manage medications and appointments.
• Symptom Tracking: Encourage your loved one to track symptoms using apps like PainScale.
• Legal and Financial Support: If you’re managing financial or medical decisions, visit National Alliance for Caregiving for information on navigating legal responsibilities.

6. Access Professional Help
If caregiving becomes overwhelming, seek professional help. This could include a mental health counselor, physical therapist, or nurse specializing in EDS care. Caring for someone with EDS is a journey that requires both strength and compassion. Remember, you’re not alone—there are communities, resources, and professionals ready to support you. Prioritize your health, seek help when needed, and use the tools available to make caregiving more manageable.

Top Ten Suggestions for Caregivers of EDS Patients

Being a caregiver for someone with Ehlers-Danlos Syndrome (EDS) can be overwhelming at times. To maintain your well-being, it’s essential to incorporate self-care into your routine. Here are specific, practical self-care strategies tailored for caregivers:

1. Schedule Breaks Daily: Even a short break can make a significant difference. Try:

• Micro-breaks: Set a timer to take a 5-minute breather every couple of hours. Use this time to stretch, close your eyes, or sip a cup of tea.
• Mindful Moments: Practice mindfulness or deep breathing exercises to ground yourself. Apps like Headspace, Insight Timer, or Calm can help you with short meditation sessions.

2. Engage in Physical Activity: Staying active boosts your physical and mental health:

• Yoga or Stretching: Gentle stretching or yoga helps relieve tension. If you’re short on time, apps like Yoga for Caregivers offer quick routines.
• Walk Outdoors: A 15-minute walk can improve mood and clarity. Walking outside provides a natural mood boost through fresh air and sunlight.

3. Delegate Tasks: It’s important to know you don’t have to do everything:

• Create a Task List: List caregiving tasks that can be shared. Use services like CaringBridge to organize help from family or friends.
• Use Delivery Services: To lighten your load, consider grocery delivery apps like Instacart or medication delivery services.

4. Prioritize Sleep: Quality sleep is essential for maintaining your energy and health:

• Set a Sleep Routine: Aim for consistent sleep by creating a calming bedtime routine, whether it’s reading, listening to soothing music, or dimming lights an hour before bed.
• Limit Screen Time: Try to avoid screens before bed to improve sleep quality. If you need help winding down, apps like Pzizz offer sleep-inducing sounds.

5. Find Emotional Support: Don’t overlook your own emotional needs. Consider:

• Journaling: Write down your thoughts, frustrations, or daily wins to process your emotions. Journaling can provide a therapeutic outlet.
• Talk to a Therapist: Speaking to a counselor who understands caregiving stress can provide relief. Platforms like BetterHelp offer accessible online therapy.

6. Engage in a Creative Outlet: Take time for activities that bring you joy and relaxation:

• Arts and Crafts: Whether it’s knitting, painting, or scrapbooking, creative hobbies help reduce stress and provide a mental escape.
• Reading or Audiobooks: Escape into a good book or listen to audiobooks while doing caregiving tasks. You can use apps like Audible for convenient access to audiobooks.

7. Nourish Your Body: Taking care of your physical health by nourishing your body is crucial:

• Hydration: Drink plenty of water throughout the day, especially during busy caregiving hours.
• Quick, Nutritious Meals: Prep simple, healthy meals for yourself using services like Mealime to save time. Opt for nutrient-rich snacks like nuts, fruit, or protein bars for quick boosts.

8. Set Boundaries and Say No: Learning to say no and setting boundaries can protect your energy:

• Be Clear About Limits: Be open with your loved one about what you can handle. It’s okay to delegate or ask for help when needed.
• Schedule Time Off: Arrange for respite care, even if it’s just for an afternoon, so you can recharge. Organizations like ARCH National Respite Network offer respite care resources.

9. Connect with Other Caregivers: Sharing experiences with others who understand can be healing:

• Join a Support Group: Join a local or online support group for caregivers of chronic illness patients. You can find groups through the Family Caregiver Alliance.
• Attend Webinars: Educate yourself through online seminars or workshops geared toward caregivers, such as those offered by the National Alliance for Caregiving.

10. Celebrate Small Wins: Acknowledge your efforts, even on tough days:

• Daily Gratitude: At the end of each day, write down one thing you did well or are grateful for. This practice helps shift focus from stress to positive moments.

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By incorporating these self-care strategies, you can nurture yourself while being there for your loved one. Taking small steps to prioritize your well-being helps ensure that you have the strength and energy to provide care in the long term.