How to Avoid Advocacy Fatigue

In today's fast-paced healthcare system, people living with chronic illnesses and their loved ones often find themselves navigating a complex maze of medical procedures, insurance claims, and doctor appointments. Being a patient advocate is a vital role in ensuring the best possible care for a loved one, but the continuous responsibilities and challenges can sometimes take a toll, leading to what is commonly known as “patient leader/caregiver advocacy fatigue."

What is advocacy fatigue?

Patient advocacy fatigue refers to the emotional, mental, and physical exhaustion experienced by individuals who tirelessly support and fight for the rights and well-being of patients. It can be particularly overwhelming for those in long-term caregiving roles, or those who advocate for individuals with chronic or complex medical conditions.

In my extensive 14 years of advocacy work, I have had the privilege of meeting numerous individuals battling chronic illnesses who, unfortunately, ended up leaving health-related support groups or nonprofit organizations due to burnout. These individuals, whom I once knew as energetic and enthusiastic about spreading awareness and advocating for others, now feel utterly drained, as if their very essence has been depleted. Witnessing their transformation into a shadow of their former selves has been deeply saddening. It serves as a stark reminder for me to exercise caution in order to avoid finding myself in a similar situation.

Learn to recognize the signs

Recognizing the signs of patient leader/caregiver advocacy fatigue is crucial in addressing it promptly. Common symptoms include feelings of helplessness, irritability, sleep disturbances, decreased motivation, and a sense of being emotionally drained.

Some practical strategies to avoid and manage burnout

1. Take care of yourself

Honestly, I’m looking in the mirror when I share this first tip. I know firsthand that it’s vital to prioritize your own well-being to be effective in your advocacy role. Schedule regular breaks, engage in activities that bring you joy, set boundaries, and practice self-care techniques such as exercise, mindfulness, and relaxation. Remember, taking care of yourself allows you to care for others more effectively. Spending time with my family just for the fun of it, without phones or an audience, helps me to recharge personally.

2. Establish a community

Joining a support group or connecting with others who share similar experiences can provide immense emotional relief. There will always be room for community. Community allows people to share their emotions, tasks, and goals. Trying to achieve things within a group that can share the load will sometimes make things easier. Community and support groups offer a safe and understanding space to share your challenges, learn from others, and receive encouragement.

3. Educate yourself

Knowledge is power when it comes to patient leader/caregiver advocacy. Stay informed about your loved one's medical condition, treatment options, and available resources. Learning about the healthcare system can help you navigate it more effectively and make informed decisions. Healthcare was not my subject of choice. Over the years, I have had to learn how to incorporate my love of History, English, and the arts into my role as a caregiver. I’ve had to learn how to co-exist in the healthcare world in a way that excites and rejuvenates me. For me, this means that I write books that add visuals and stories to my family's experience.

4. Delegate and share responsibilities

It's crucial to remember that you don't have to do it all alone. Identify and communicate the various tasks that can be undertaken by other family members, friends, or professional caregivers. Sharing responsibilities can alleviate some of the burdens and give you much-needed mental and physical breaks. This really goes back to the community. Find a network of people you trust. Then collaborate with them, and sometimes, suggest other people in your circle for opportunities that don’t suit your interest or those you don’t have time for.

5. Establish clear communication

Ensure effective communication between healthcare professionals, insurance providers, and other relevant stakeholders. Establish a system for sharing information, keeping track of appointments, and organizing medical records. Clear communication can prevent misunderstandings, reduce stress, and streamline the advocacy process. As an advocate, I learned a valuable lesson that has been ingrained in me: the importance of not saying "Yes" when I truly mean "No."

6. Set realistic expectations

Recognize that it's impossible to control every aspect of the healthcare journey. Set realistic expectations for yourself and accept that there will be limitations beyond your control. Celebrate small victories and focus on what you can achieve rather than dwelling on the things you cannot change. Let’s be honest, sometimes my daughter’s care frustrates me. There are occasions when I find myself disheartened by the fact that what I advocate for, tirelessly, doesn't always directly translate into meaningful changes in personal care for my daughter. However, rather than dwelling in despair, I choose to acknowledge the reality that lasting transformations require time and patience.

7. Take advantage of technology

Utilize technology tools to streamline and simplify your advocacy efforts. Mobile apps, online platforms, and electronic health records can help you stay organized, access important information quickly, and communicate with healthcare providers more effectively. At one point, I experienced a recurring issue of missing meetings and appointments despite my genuine intention to attend. To address this challenge, I made the decision to invest in a watch that synchronizes with all of my calendars and sends me alerts for upcoming appointments.

Additionally, I started utilizing a family calendar to ensure that my daughters and husband are also aware of our commitments. Since implementing these changes, we have successfully been able to be punctual for our various engagements.

8. Practice self-compassion

Patient advocacy can be emotionally challenging, and it's essential to be kind and forgiving to yourself. Acknowledge that you are doing the best you can under difficult circumstances, and remember that you are making a positive difference in someone's life. I remind myself that as an individual, I can only focus on one task at a time, so if something is not my priority, it will need to be postponed.

By implementing these strategies, patient leader/caregiver advocates can enhance their ability to provide effective support while safeguarding their own well-being. Remember that seeking professional help from therapists, counselors, or support organizations is also an important step if the fatigue becomes overwhelming and begins to affect your overall well-being. Personally, I try to see my therapist weekly to stay recharged. It’s a time when I can vent safely.

Adopting a proactive approach to self-care and employing effective advocacy strategies can empower patient advocates to continue making a positive impact in the lives of their loved ones without compromising their health and well-being. Remember, look after yourself now so you will be able to see the fruits of your labor.

Question for the reader

Have you ever experienced advocacy fatigue? If so, what signs did you notice, and how did you manage to regain your momentum?