The Vital Role of Caregivers in Autoimmune Disease

Tracy Asamoah, MD

Autoimmune disorders impact millions of Americans, with over 80 currently known disorders. Informal caregivers play an essential role in supporting many adults living with these disorders. If you’re helping a loved one manage their health, your role is vital—and as the number of autoimmune diagnoses grows, understanding what you do and how to support you matters more than ever.

Most caregivers aren’t paid professionals; they’re often people who step up out of love and concern, such as spouses, children, siblings, or close friends.

While caregiving can be deeply meaningful, it also comes with emotional, physical, and financial challenges. In fact, the 2022 National Strategy to Support Family Caregivers (1) highlights the strain caregiving can create with a call to better understand how to support those in these roles.

What Shapes the Caregiving Experience?

Every caregiver’s situation is unique, and several factors can shape the experience:

Your relationship with your loved one
Whether you live together or in different areas
Your employment status
Your background in healthcare (if any)
Cultural values and expectations
The age of your loved one and how independent they are
The complexity of their condition

Caregiving can be filled with love and purpose, but also emotionally and physically draining. As Dr. Gerda Maissel, physician and founder of My MD Advisor, a patient advocacy service, puts it, “Caregivers often experience a tremendous feeling of meaning, making a difference or [a] sense of expressing love to a treasured loved one. The flip side is that caregivers often experience tremendous stress, and they have higher rates of depression, anxiety, hypertension, diabetes, and pain.”

In this article, we’ll explore how caregivers support patients in managing their health and navigating the healthcare system, and how caregiving affects them.

How Caregivers Support Health Management

Dr. Maissel emphasizes that caregiving begins with truly listening to what your loved one needs and wants. From offering encouragement to health insurance hurdles, you may be involved in many aspects of their care.

Autoimmune disorders can be complex, often affecting multiple parts of the body and causing significant disruption in a person’s daily life. You can play a role in your loved one’s life by helping them recognize the impact of their disease and how to best manage it.

The Global Autoimmune Institute’s toolkit for people living with autoimmune disorders highlights areas where caregivers might offer support:

Learn About the Condition: Understanding your loved one’s autoimmune disorder can help you prepare for symptoms, flare-ups, and treatment options.
Support Treatment Routines: Help them stay on track with medications, appointments, and lifestyle changes.
Offer Emotional Support: Be a safe space for them to talk, vent, and process what they’re going through.
Promote Healthy Habits: Encourage rest, movement, nutrition, and stress relief.
Watch for Flare-Ups: Help them track symptoms and adjust daily routines when needed.

Don’t forget the importance of balance. Elizabeth Miller, caregiving expert, coach, and founder of Happy Healthy Caregiver, LLC, learned first-hand about the complexity of being an adult caregiver caring for her mother. She shares, “Sometimes caregivers feel their role is all about managing the care, however, it’s important to seek fun and honor the original relationship. For example, my mom and I used to play board games, go out for ice cream, reminisce over family photos and videos, color, and talk about the books we were reading.”

Helping Navigate a Complex Healthcare System

The healthcare system can be overwhelming—especially with multiple appointments, specialists, and confusing insurance plans. You can help ease this burden by stepping in as a guide and advocate.

Where you can make a difference:

Helping schedule appointments: Keep track of visits and treatments to ensure continuity of care.
Helping with paperwork: Assist with insurance claims, financial aid, and medication approvals.
Speaking up at appointments: Help prepare questions and ensure your loved one’s concerns are heard.
Finding resources: Explore reliable information, support groups, and potential clinical trials.

How Caregiving Affects Caregivers

There’s no doubt that caregiving can be rewarding—it often deepens bonds and builds resilience. But it can also take a toll, especially when caregiving needs are intense or long-term. You may find yourself juggling multiple roles, managing complex health needs, and feeling mentally or physically worn out.

Things that can contribute to caregiver strain include:

Long-term care responsibilities
High levels of patient dependence
Disease complexity
Constant multitasking
Emotional or behavioral challenges

Taking Care of Yourself

Taking care of yourself is not just important—it’s essential.

Ms. Miller recommends scheduling time for yourself just like you would for your loved one’s medical appointments. She also encourages finding a support community, building a personal care team, and recognizing when it’s time to ask for help.

“I think the one piece of advice that works across all situations is to occasionally step away. That may mean allowing someone else to swap out with you, even if that means hiring someone. By stepping away, whether for 30 minutes or a day, you get a chance to recharge and gain perspective.”
– Dr. Maissel

Caregivers often lose time for social connection, which can lead to loneliness. But it doesn’t have to be that way. “Social isolation and relationship challenges are common as caregivers prioritize their loved ones over personal connections,” says Ms. Miller, ”however, caregiving can also build resilience, deepen relationships, and inspire advocacy when caregivers find support and infuse self-care.”

Dr. Maissel suggests looking into organizations that offer support, such as health systems, state offices for the aging, disease-specific groups, hospices, and private-sector coaches. The AARP also offers extensive caregiving resources.

Strategies for Caregiver Wellness:

Know the Signs of Burnout: Look for emotional exhaustion, irritability, or changes in sleep and mood.
Set Healthy Boundaries: Know your limits and ask for help from friends, family, or respite services. Getting help from family, friends, professional respite care services, and peer support programs have been found to reduce stress and improve caregiver well-being and overall quality of life (2).
Care for Your Mind: Therapy, mindfulness, and peer support groups can help process emotions.
Care for Your Body: Take care of your health—nutrition, movement, rest, and doctor visits matter.
Stay Connected to Joy: Make time for hobbies, friends, and the parts of your identity that exist outside of caregiving.

Empower the Patient

Self-management, a patient’s daily activities to manage symptoms, treatments, lifestyle changes, and illness’s psychosocial, cultural, and spiritual consequences, can empower you and your loved one (3).

Self-management strategies might include (4):

Learning about their condition
Communicating with their care team
Managing daily routines
Navigating emotional ups and downs
Exploring supportive resources

Caring for a loved one with an autoimmune disorder can bring both the beauty and the challenges. Remember, support for caregivers exists—because you deserve care, too.

We encourage you to check out the Global Autoimmune Institute’s Autoimmune & Chronic Illness Toolkit to find tools, checklists, and support for your caregiving journey.

About the Author

Tracy is a writer, child and adolescent psychiatrist, and leadership coach. Her journey into the world of autoimmune diseases began when she experienced sudden onset symptoms of multiple sclerosis early in her medical career. This personal experience, combined with her intense curiosity, has informed her work and writing in the field. As a writer, Tracy has contributed to various books and written articles related to mental health. She’s also written on various medical topics regularly contributing to publications such as GoodRx, Psychology Today, and Psychotherapy.net

Tracy Asamoah, MD Freelance Writer for GAI