How To Advocate For A Loved One With A Mental Health Condition
Eight years ago, I lost my mother to suicide. Three and a half years before that, she was diagnosed with schizoaffective disorder, a combination of bipolar disorder and schizophrenia. The diagnosis was, in reality, just a collection of mental symptoms; it in no way explained why the symptoms were happening. My mother's mental health had deteriorated slowly over time until the big crescendo: a manic episode in New York City the summer after I graduated from college.
The night of her manic episode, she became afraid of me and my brothers and tried to run away from us. We chased her through the subway system from Manhattan to Queens, and my brother had to put her in a human straight jacket to restrain her. We called the police, and a police car and an ambulance showed up. They took her away, and that began a horrific journey through the mental health care system for our family. My mom was put on many different antipsychotic drugs and mood stabilizers and was in several different mental hospitals and saw a few different psychiatrists over those few years. The care was disjointed, confusing, and no one seemed to care if she ever really got better. Though my intuition told me I needed to take control of the situation, I hesitated and trusted that they were the experts and knew what they were doing.
I watched my otherwise sharp 57-year-old mom turn into a vegetable because of all the drug side effects: drooling, shaking, unable to sleep, slurred speech. For years, we asked about alternative treatments, even experimental ones, or at least a liver detoxification program while she was on the drugs and received an eye roll from her doctors. While the drugs helped her to relieve her mania, her quality of life was not better. She was now disabled and depressed. Finally, she thought, enough is enough.
The day she committed suicide, I was in the process of applying to business schools, and my applications were due two weeks later. It was a few days before Christmas, and though she wouldn't be there, she still prepared gifts and notes for each of us. I didn't think I could finish my applications, but my friends were incredible and helped me put the pieces together and get a few submitted in time. Once they were submitted, I declared that if I got in anywhere, I would go and use the experience as a way to change career paths and work on fixing the health care system and helping others avoid what I and my mom had been through for the rest of my life.
Today, I am a board-certified patient advocate, speaker, and the founder of WellBe, a media, education, and navigation company focused on bridging the massive divide between the health care system and the wellness movement. My mission is to help people prevent chronic health issues naturally, and I spend a lot of my time writing and speaking about how my mom's situation could have been avoided.
Whether you have a mental health issue or someone you love does, there are a few things you can do to help navigate the health care system better and find providers who practice root-cause medicine and do the hard work to help patients truly heal rather than just mask symptoms:
Dig into the research.
There are an average of 500,000 new research studies published in PubMed1 (the major database for medical research articles) each year, and there are nearly 30 million pieces of medical literature in that database. The fee-for-service payment system means doctors have to be seeing patients to make money. That leaves very little time for digging into research about new, experimental, or alternative treatments. Bringing research to a conversation with a doctor is now more important than ever. Knowledge is power, and when you assume other people have all of the answers, you give up your power.
When meeting with doctors, think of yourself as the CEO of your (or your loved one's) health: Welcome and be willing to take the opinions of others, but at the end of the day, remember that you are the boss and get to make the final decisions about your or your loved one's body and what you believe will heal it. If you don't think a recommended procedure feels right, or you would like to get more opinions or do a bit more research, be confident in your convictions, ask as many questions as you need to, don't feel pressured to make any decisions right away, and communicate your wishes.
Hire a patient advocate.
Though it's a new certification, and frankly pretty sad to me that it's even needed, there are now a few hundred of us board-certified patient advocates (BCPA) in the U.S. An advocate can be a great resource if you feel lost and are coordinating with several specialists or are still searching for a diagnosis or getting bounced around for different tests and consultations. Patient advocates are licensed to go to appointments with you, research the different treatment options and costs, advise you on which route might be the best to pursue first, and help you along your healing journey. If you have a full-time job and don't have time to go to appointments with your loved one, or do research and deal with insurance companies, or if you are the patient and don't have anyone to accompany you to your appointments and would like one, advocates can be a great source of support.
Find a functional or integrative medicine doctor or practitioner.
The main lesson I took away from my mom's experience in the mental health care system is that treating symptoms without understanding why they are happening does not truly heal the root cause of health issues or diseases. Certain drugs, surgeries, medical devices, or procedures can do irreparable harm, and side effects can cause other health issues. Unfortunately, functional or integrative medicine doctors often don't take insurance (or you pay up front and then get reimbursed from your insurance company) and can be more expensive than conventional doctors. However, in my experience, you save money and time in the end by seeing one.
Let me explain: These kinds of doctors dig deeper with their questions and their testing, and most of all, they have the root cause of your health issue in mind when thinking about your case. When dealing with one of my own health issues when I was 20, I went to a half dozen conventional doctors who told me the same thing and didn't help me figure out the problem. I then went to a naturopath who looked at my case very differently and helped me solve my issue. Those half dozen appointments cost me a lot of time and money and left me feeling frustrated and hopeless. If you cannot afford to see a functional or integrative medicine doctor, consider starting a GoFundMe page or getting a loan from a friend or family member.
Whether or not you're able to take any of the above actions, the most important thing to remember: Don't give up. Many of the successful stories of health recovery I have filmed happened years or even decades after the patient became sick. Perseverance and a belief that healing is possible is required in this fight, but I have learned the hard way that it is worth it.
Adrienne Nolan-Smith is a board certified patient advocate, speaker, and the founder of WellBe, a media, education and navigation company focused on bridging the large gap between the healthcare system and the wellness movement to help people prevent and reverse chronic health issues naturally. She received her BA from Johns Hopkins University and her MBA from the Kellogg School at Northwestern University. She lives with her husband in New York City. You can follow her for daily inspiration and information @getwellbe.