Navigating Autoimmune Care With Limited Resources
Navigating the healthcare system can be challenging for almost everyone. Finding the right providers, getting timely appointments, and accessing appropriate treatments often feel overwhelming. For people living with autoimmune and other chronic conditions, these challenges can be even greater.
Some individuals, such as those in low-income or rural communities and people of color, face additional obstacles because of limited access to healthcare, financial resources, or community support. These barriers, often referred to as healthcare inequities, play a powerful role in shaping overall health and long-term outcomes (1).
Zachary Schultz, PhD, senior lecturer at Auburn University, highlights a core problem within the U.S. healthcare system, saying, “From a historical and public-health perspective, the central challenge is that chronic illness management assumes stability, stable housing, stable employment, stable insurance, while under-resourced communities often experience the opposite. The U.S. healthcare system was largely built to respond to acute crises rather than to sustain long-term care, and that structural mismatch is especially punishing for people with chronic or autoimmune conditions.”
Like people who have chronic health conditions, people with autoimmune disorders can face unique healthcare challenges. Diagnosis and treatment can be complex, often involving multiple specialists, tests, and interventions.
Care can be a financial and time burden.
Some people with autoimmune disorders live in environments or are part of groups that can directly impact health outcomes. Certain factors can affect access to care and quality of care, leading to poorer health outcomes.
For people with autoimmune disorders, diagnosis and treatment are often complex. Care may involve multiple specialists, repeated testing, long-term medications, and lifestyle adjustments. Managing all of this can place a heavy burden on time, finances, and emotional well-being.
In addition, where someone lives, works, and accesses care, and the systems they must navigate, can significantly influence health outcomes.
How Social Factors Shape Health
Many health challenges are shaped by social determinants of health (SDH), nonmedical factors that influence how healthy someone can be. These include (2):
- Poverty
- Unsafe or unhealthy living environments
- Poor quality or unaffordable housing
- Food insecurity (lack of access to enough nutritious food)
- Lack of access to quality education or jobs that pay a livable wage
When these factors are present, individuals are more likely to experience healthcare disparities that lead to adverse health outcomes closely linked to social, economic, and/or environmental disadvantages (3).
Patient care advocate Hilary Hodges observes these effects firsthand. She emphasizes the importance of taking preventative steps, saying, “Not taking medication or getting proper care results in a wide array of preventable outcomes, including worsening illness, developing comorbidities, and an increase in hospitalizations.”
In this article, we’ll explore the challenges that people with autoimmune disorders in under-resourced communities face and practical strategies for navigating care when resources are limited.
Unique Challenges Faced in Under-Resourced Communities
Managing an autoimmune condition is difficult under the best of circumstances. Healthcare disparities can add several layers of complexity.
Delayed Diagnosis
Limited healthcare availability and poor symptom recognition can delay getting a diagnosis. Certain populations, such as women of color, are more likely to experience provider bias, leading to prolonged suffering and delayed treatment (4).
Difficulties Accessing Care
People facing healthcare inequities often experience long wait times and limited availability of providers, especially specialists such as rheumatologists or neurologists. Rural communities are particularly affected.
Hodges points to a recent analysis, “I just read in a Commonwealth Fund Analysis report from 2025 that 45% of rural counties have five or fewer primary care physicians and that their average case load is 2,881 patients. Doctors simply don’t have the capacity to provide patients with chronic conditions consistent care and check-ins throughout the year.”
Gaps in Health Information
Access to reliable, understandable, and culturally relevant health information is unequal across communities, making it harder for patients to understand their conditions or treatment options.
Financial Strain
The cost of medications, lab tests, special diets, transportation, and missed workdays can disrupt care. Even insured individuals may struggle with out-of-pocket expenses.
Systemic Barriers
A lack of nearby healthcare facilities, limited culturally responsive care, transportation challenges, and structural bias within healthcare systems all contribute to poorer outcomes.
Schulz emphasizes, “Historically, marginalized populations are more likely to enter care later in the course of illness, often only after symptoms have become severe or disabling. For chronic and autoimmune conditions, delays are not neutral events; they shape the entire trajectory of disease and daily life. Missed or disrupted care becomes cumulative harm over time, affecting not only physical health but also economic security, mental well-being, and the ability to plan for the future.”
Navigating Care with Limited Resources
Efforts, such as the CDC’s REACH program, are just beginning to address healthcare inequities. The REACH program’s goal is to make healthy eating and active living more accessible and affordable to priority populations.
While systemic change is essential, individuals still need tools to navigate today’s healthcare landscape. Social support, collaborative care, technology, and informed self-advocacy can help ease the burden.
Becoming a Self-Advocate
Learning about your condition and becoming an active participant in your healthcare are essential. While larger system-wide changes are needed in healthcare, specific tools and strategies can empower individuals to have their needs met.
Helpful strategies include:
- Learning how to advocate for yourself during medical visits. The Myaware self-advocacy resource page offers helpful tips.
- Joining research registries or patient councils to amplify underrepresented voices.
- Educating family and community members to build a network of support
Hodges emphasizes the importance of self-advocacy, noting, “On average, it takes 4.6 years from the onset of symptoms of an autoimmune condition to getting a correct diagnosis. If you continue to have symptoms and don’t feel like you are getting the right care, keep gently but firmly showing up to your doctor and getting second or third or fourth opinions until you get the care you need.”
Building a Healthcare Team
Autoimmune care often involves multiple providers. When possible, aim for a coordinated team that communicates effectively.
Consider these steps:
- Identify local healthcare resources, such as community clinics or federally qualified health centers
- Use your insurance directory to find in-network primary and specialty providers
- Choose a ‘team captain’, often your primary care provider, to help coordinate care
- Simplify, when possible, by using providers within the same healthcare system
- Seek allies such as patient advocates or healthcare navigators
Flexible and collaborative care matters. Schulz notes, “From a public-health perspective, honesty and flexibility are essential. Patients benefit when providers acknowledge real-world constraints rather than presenting unattainable ideals. Historically, trust and adherence improve when care plans are negotiated within the realities of cost, access, and availability. This is not about lowering standards of care. It is about aligning care with lived conditions shaped by policy, economics, and inequality.”
Making the Most of Primary Care
Your primary care provider can be the central hub of your care.
To optimize visits:
- Keep an up-to-date medication list
- Use patient portals to communicate between visits
- Write down your top three concerns before appointments
- Take notes or bring a trusted support person
- Request visit summaries and clear next steps
Building Strong Support Networks
Living with an autoimmune condition can be physically and emotionally demanding. Support from both people who understand your diagnosis and those who support you as a whole person is essential.
Sources of support can include:
- Trusted friends and family
- In-person or online support groups
- Community organizations, clubs, or faith-based groups
Optimizing Lifestyle Choices
Lifestyle choices are an essential component of your healthcare journey. Prioritizing balanced nutrition, quality sleep, and regular movement can make a difference.
Stress contributes to our vulnerability to illness and to how conditions progress. Try free or low-cost stress-management strategies such as mindfulness or gratitude practices and time outdoors.
Seeking Low-cost Tools and Resources
Several tools can help reduce barriers to care:
- Telehealth services can minimize travel time and costs (libraries or community clinics may offer internet access if needed)
- Medication assistance programs through manufacturers or insurers
- Prescription discount tools and price comparison services
- Generic medications, when appropriate
Hodges advocates innovative approaches to accessing care, noting, “Telehealth appointments for check-ins, this is particularly useful for patients in rural areas, who lack reliable transportation, or who are largely homebound due to their condition.”
Finding Community and Online Support Systems
Beyond family and friends, community-based resources can provide practical assistance such as education, transportation, or care coordination.
These may include:
- Faith-based programs offering rides or peer support
- Nonprofits providing condition-specific resources
- Peer mentors, community health workers, or patient navigators
As Hodges recommends, exploring online resources, “Foundations and online support groups on platforms like PatientsLikeMe are terrific free resources. For patients with rare diseases, the EveryLife Foundation. For patients with autoimmune conditions, the Autoimmune Association. “
Alongside supportive family and friends, community-based and online resources are essential to building an accessible, affordable support network.
Finding Emotional and Mental Health Support
People with autoimmune disorders experiencing the additional challenges of living with limited resources are at higher risk of having chronic stress, depression, or anxiety. Support is available often at low or no cost:
- Free mental health hotlines and low-cost teletherapy programs
- Online or in-person autoimmune support groups
- Culturally responsive mental health services
If you or someone you care about is experiencing a mental health crisis, immediate help is available through the 988 Lifeline, a free, confidential resource.
You’re Not Alone
Schulz reminds us, “Chronic conditions require predictability, stable coverage, consistent access to medications, and fewer bureaucratic interruptions. Historically, systems that prioritize continuity produce better outcomes and lower long-term costs. Treating access as provisional or conditional undermines both health and trust, particularly for people managing lifelong conditions.”
Living with an autoimmune condition, especially while navigating healthcare inequities, requires resilience, creativity, and strength. Small steps, supportive communities, and shared knowledge can make the journey more manageable.
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
Sources
- Article Sources
Goulmamine, S., Chew, S., & Aninye, I. O. (2024). Autoimmune health crisis: An inclusive approach to addressing disparities in women in the United States. International Journal of Environmental Research and Public Health, 21(10), 1339.
Centers For Disease Control (2024). Addressing Social Determinants of Health and Chronic Diseases.
Jack Jr, L. (2021). Advancing health equity, eliminating health disparities, and improving population health. Preventing Chronic Disease, 18, E79.
Wolfe, B. H., Gunning, J. N., Boateng, S. N., Hintz, E. A., & Cardwell, M. E. (2024). Disenfranchising talk mediates the relationship between social determinants of health and well-being outcomes for women of color patients with autoimmune disease. 7Journal of Health Communication, 29(8), 548-555.
