For people with psychosocial disabilities and mental illness, medical gaslighting often mars access to healthcare

What is ‘normal’? In this fortnightly column, Srinidhi Raghavan explores the understanding of bodies-minds and navigating spaces as disabled, chronically ill and sick people. Read more from the series  here. *** Less than a month ago, I went to a new rheumatologist for my pain and persistent exhaustion. In front of him were my test results which showed clear as day that I had tested positive for an autoimmune condition. My regular doctor was insistent that I consult a specialist who came highly recommended. The new doctor made a note of all the medication I was on. On this list were my mental health medication as well. Almost as if I had a dangerous communicable disease, this doctor told me I have no problems and I am probably “just a little depressed” before sending me out the door. As someone who’s lived with mental health conditions for a very long time, I have had terrible experiences of dismissal and medical gaslighting (a form of reaction from a medical professional that forces the person experiencing the symptoms to question themselves and their experiences) in the search for a diagnosis and some relief from chronic pain. Of course, everyone’s experience of diagnosis and navigating the medical system is different. Sometimes diagnosis happens within a few months and some other times, it takes years, maybe even decades of doctor visits and tests. Over the years of being forced to be an advocate for myself within the medical system, I have learnt some interesting things about healthcare. Or one might say I have discovered the endless pit of how sexist ideas about women being unable to deal with pain meet doctors’ ableist understanding of mental illnesses or psychosocial disabilities. For women with psychosocial disabilities, mental illnesses or mental health conditions, diagnoses are a hard won fight. Gaslighting, therefore, is one of the most common experiences we face. So I asked other women with disabilities, patient advocates and fellow chronic illness-havers about their experiences around doctors and gaslighting. For G, a student and an actor, she spent five years looking for a diagnosis. “Initially most doctors were not sure what it was because they felt I was “too young” to get spasmodic dysphonia - a medical condition where the voice box gets spasms. For the first few years, doctors were convinced I was acting - because I was an actor. There were of course many doctors along the way who recommended going to a therapist or those who recommended religious places, till I found a doctor who gave me the correct diagnosis - thus giving me access to the correct medication which would support me,” she said. A lawyer and patient advocate, Shambhavi Ravishankar, addressed the harm the delay in diagnosis and the inherent gaslighting has on patient advocates like her. She said, “It’s only in the last six months that people have started taking it seriously that I have chronic pain. I have felt that if I am not vociferously explaining how much pain I am in, no one takes me seriously, thereby dismissing my pain. I’ve heard this from many patients that you start doubting your own symptoms, your own perceptions of your symptoms, whether they are severe enough or not, whether they are real or not.” Often the long-term harm caused by medical gaslighting leads to trauma that needs medical attention. In the memoir Sick, Porochista Khakpour writes, “Women simply aren’t allowed to be physically sick until they are mentally sick, too, and then it is by some miracle or accident that the two can be separated for proper diagnosis. In the end, every Lyme patient has some psychiatric diagnosis, too, if anything because of the hell it takes getting to a diagnosis.” For Anna, a filmmaker, this journey was one of 20 years. She said, “I spent years telling gynaecologists that sex is painful, I have pain in my abdomen too often, or I spend half the month in discomfort related to my period. It was only when I was 41 that I was diagnosed with endometriosis and adenomyosis.” In each case, she states that there was a change in attitude the minute doctors saw that she had been diagnosed with bipolar disorder. “Immediately, a lot of the symptoms become imagined for the doctors from there on, then they suggest I see a psychiatrist. This is not a one off case either, versions of this have happened many times,” she shared. This becomes particularly hard when you live with invisible conditions or disabilities. Anna added that for people like her who have chronic fatigue syndrome or myalgic encephalomyelitis and fibromyalgia, blood work often doesn’t reveal the state the bodies are in. Often doctors are pre-occupied with the mental health condition and discard lived experiences of exhaustion and pain. Anna also added that medical professionals specifically emphasise on exercise as a “cure”. “It is so cruel to ask someone who can barely move on some days to join a gym.” For so many of us, the process of going to the doctor, getting tests done or explaining our symptoms and experiences was not a pleasant one. Shambhavi, who lives with a rare condition called Alagille Syndrome, reiterates that often doctors don’t have the time or knowledge about these rare conditions to provide the adequate care needed. But medical gaslighting of symptoms or broadly dismissing the experiences have serious consequences. Many of us avoid going to the doctor altogether from the fear of being disbelieved. Fellow disabled friends share stories of fainting in pain or being unable to leave the bed because of the pain - before they even think they will approach a doctor. The sheer exhaustion and discomfort patients are willing to put up with before approaching the medical system shows a deep flaw in the way we approach experiences and lived realities. The medical ableism (covered in my previous column) associated with invisible disabilities, psycho social disabilities or mental illnesses or mental health conditions results in many not receiving the appropriate care and support they need. Finding a diagnosis is merely step one in the process of accessing healthcare. But in many cases, our diagnoses are the very same things that medical professionals hold against us as a way to remind us that it’s all, in fact, in our heads. (Gaslighting has many effects on women, especially those with long-term health conditions and disabilities. In next month’s column, we will explore some of the other effects and intersections.) Srinidhi Raghavan is a writer, researcher and trainer. She works at the intersections of sexuality, gender, disability and technology. She works on programme development with Rising Flame and is the Co-Founder of The Curio-city Collective.