Nurturing Self-Advocacy When You Have a Mental Illness

                  Self-advocacy is an important aspect of our lives. Everyone needs to be able to self-advocate. This is especially true when you have an illness. Self-advocacy is defined as “the action of representing oneself or one’s views or interests. (Oxford Languages) On the surface this sounds like it should be easy, but reading a definition on paper or a screen is a lot easier than putting that definition into action.

                  It took me a long time to develop the skills to self-advocate for my needs as an individual with mental illness. In my late 20s I knew I needed therapy and was able to seek out a therapist. Finding my psychologist, who provides my therapy, was my first step toward self-advocacy. Unfortunately, I allowed myself to stop advocating for myself at that point. Shortly after finding my psychologist, I started seeing a psychiatrist. At first, she seemed like she was meeting my needs. After a couple years, I recognized that there were things I was uncomfortable with when seeing her. Every appointment was the same. I never felt like she was listening or wanted to know how I was really doing. She would always add a prescription and increase the dosage of other medications. This went on for about a decade. 

                  As I have shared in previous posts a physician’s assistant I was seeing for primary care showed me that I was being overmedicated by this psychiatrist. She also taught me that I did not have to keep seeing a psychiatrist who was not helping me. This was really my first step toward self-advocacy for my mental health. I found a new psychiatrist. From there I went through a few psychiatrists because I was looking for the right match for me. I learned what I wanted in a psychiatrist. (Check out this post: Finding the Right Psychiatrist for You) Learning that it was okay to search for the psychiatrist that I felt comfortable with and who had my best interests in mind led to finding the psychiatrist I am currently seeing. Learning that it was okay for me to say what I needed, allowed me to find the best psychiatrist. 

                  In the years since I have learned I could advocate for my mental health needs, I have developed my self-advocacy skills. I had the awful experience of a primary care provider treating me with ignorance and stigma (Turning Hurtful Words into Healing). After initially being hurt by this experience, I soon found that it lit a fire in me that allowed me to really become a self-advocate.

                  What are the steps in self-advocacy? Let’s look at what goes into self-advocacy.

                  Self-awareness: Before we can advocate for ourselves, we need to recognize our needs. In doing this we identify what feel, experience, and struggle with. We should know our triggers and coping strategies. If we have a diagnosis, we should learn about our diagnosis and how it impacts us.

                  Educate Yourself: It is important research mental health conditions and treatments. In addition, we should know our rights. There are laws that protect us. It is important that we are aware of these laws.

                  Communicate Clearly and Confidently: It helps if we practice what we want to say. Using “I” statements when we express our needs keeps the focus on what we need. We need to develop the ability to ask questions. If we have questions for a provider, we need to remember that we have a right to ask those questions. I wish that I had asked questions when so many medications were being prescribed for me. Tied to asking questions is expressing our preferences. We need to let our providers know when something works for us and when something doesn’t. 

                  Build a Support Network: Try to surround yourself with family, friends, support groups, and advocates to help you speak up about mental health. This can be difficult when you have a mental illness. Stigma often prevents us from developing a support network. It took me time to gather people to support me. Don’t worry if it takes time. Sometimes even one person can make a difference. It is the quality of the support network that matters, not the size. Mental health and physical health professionals who respect and listen to us are important. Remember we have a right to find the professionals who fit our needs.

                  Set Boundaries: We need to remember that we can say no. Protecting our energy and mental space is crucial. Our well-being comes first. If something compromises that well-being, we can say no. Setting boundaries includes defining what we need from others. Others may not know what we need from them. It is okay to let them know what we need. 

                  Keep Records: It is helpful to keep records of our symptoms, medications, and side effects. Keep track of what works and what doesn’t. Journaling is one way to maintain records and track our progress. Having everything in writing allows us to share what we are going through and what works and what doesn’t with our providers.

                  Know When to Escalate: If our needs aren’t being met, we have the right to speak up. Our providers won’t know if we don’t tell them. If we struggle with speaking up, it might help to ask someone in our support network to be an ally. This person can go with us to an appointment and help us share our needs. If our needs continue to be unmet, we have a right to file a grievance or find a new provider. 

                  Practice Self-Compassion: Living with a mental illness is difficult. When we add the need to self-advocate, it is easy to become tired or overwhelmed. This is why it is important to practice self-compassion. We need to be kind to ourselves. Remember it is okay to ask for help or to take a break. 

                  Self-advocacy is important when we have a mental illness. It is important with any illness. Stigma exists. Providers who don’t really listen exist. It is up to us to say, “I have needs and I deserve to have my needs met.” It is a process. It takes time to develop self-advocacy skills. We need to be patient with ourselves and give ourselves grace. Self-advocacy leads to wellness. 

I was decades into my mental illness before I learned I could advocate for myself. I lost years of wellness because did not speak up when I needed to. I hope that others can learn from my experience and that others gain self-advocacy skills to help them heal.