Part 1: The Patient
“I dread going to the hospital…I have to explain myself every time and prove to them I’m not ‘crazy.’ I’m there feeling terrible, but need to be on my ‘best behavior’ so they can see I really do know what’s happening and what I need.” – Client with cancer and schizophrenia
A common fear for people who have both a diagnosed mental health disorder and a physical illness is that they will enter a medical setting only to have their symptoms dismissed. Clearly, there are many facets of this topic. In this article, we will focus on individuals with mental health issues who are navigating the medical system. Next time, we will discuss the experiences of medical providers and residential facilities, and the final article will discuss strategies for family members and loved ones who support an individual with physical and mental health issues.
The client’s statement above exemplifies what studies have concluded about the experience of people with mental illness and the medical system in the U.S. The article, “Mental Illness-Related Stigma in Healthcare: Barriers to Access Care and Evidence-Based Solutions” states, “Mental illness-related stigma, including that which exists in the healthcare system and among healthcare providers, has been identified as a major barrier to access treatment and recovery, as well as poorer quality physical care for persons with mental illnesses.” Furthermore, “People with lived experience of a mental illness commonly report feeling devalued, dismissed, and dehumanized by many of the health professionals with whom they come into contact.”
Common questions clients often wonder include: Will a doctor take my physical concerns seriously? Will they assume that it’s an issue with my psych meds? Will medical staff be watching my behavior more closely than other patients? Will doctors believe me and treat my medical issues accordingly? Essentially, patients in this situation fear that in a quick-paced medical setting, their physical concerns will be overlooked, downplayed, or go untreated. There is fear that if they speak up about a concern of being overlooked, the provider will again point to a mental health issue; that they are being “anxious” or “paranoid.” In reality, when we look at past experiences of the patient coupled with conclusions of studies which highlight the barriers people with mental health issues face in medical settings, their concerns make a lot of sense.
How, then, can someone with a mental health diagnosis prepare to interact with medical systems? In sessions with clients who are facing medical stressors, therapists often discuss several key points: What have their previous experiences with the medical system been like? How do they feel about their current providers? What skills can they use to communicate with healthcare providers effectively? Who are the supportive people in their lives who can help? As we gain a better understanding of our experiences, both positive and negative, we get more information about what drives us and scares us. Negative experiences in the past can inform how we feel going into new experiences, even if the providers or situations are different. Mental health stigma in society, institutions, and from individuals impacts how we have been treated and how we anticipate new situations.
Once we understand how our past experiences have affected us, we can begin to mindfully address our needs in the present. Individuals in this situation can bring to mind what they need now and what they CAN do. For instance, we can learn new communication skills to advocate for ourselves or request support to amplify our voice. We can track physical symptoms or side effects in a daily log to bring to appointments with doctors to help guide our discussions. We can purposefully seek out doctors that listen and respond to our needs in a meaningful way. Yes, each of these tasks take time, energy, and focus. We can acknowledge the difficulty of these tasks while understanding that working toward these goals together will help our overall well-being in the long run.
It is daunting to face a large system alone. Clients in this situation are encouraged to seek out the individuals in their lives who help them feel seen. This could be anyone from a close family member or friend who could help them advocate for themselves to a friendly receptionist at their doctor’s office. When we find the good people, the individuals who make up a larger setting, then the system feels more manageable. We can focus on one good interaction at a time as a touchstone to generate more positive exchanges. We are better able to remind ourselves that we matter and that we are human beings with needs worth discussing.
It is particularly difficult for people with mental health diagnoses to navigate the medical system for a myriad of factors. If you or a loved one would benefit from support, please reach out to WCPA to be connected with a therapist who can help.
Amy Neu, MSW, LCSW