Los Angeles, May 13 – When I think of my journey with mental and chronic physical illness, I think of loneliness. From a young age, I learned to despise authority. My OCD would cause my family to yell at me when I would clean and reorganize things around the house, which really meant color and size coordinating things that didn’t belong together. Nobody understood why I needed to put things in order, and I didn’t understand why they wouldn’t just let me do that since it would make my brain feel better. I also would have unwanted recurring thoughts all day long, and I would express my fear and exhaustion due to these thoughts to my parents, but they did not comfort me nor seek help for me. I guess I should state here, I grew up in Pakistan, and the idea of seeking professional psychiatric help for me never occurred to my guardians.
At school, I would get admonished for not making friends, for ignoring my classmates, for not speaking up in class, for not following the rules well enough. I was eventually put in a special needs class where I received very little supervision and was allowed to read and play, which I loved very much. But, to my mother, the idea of her child being different and not able to excel like the other children in class was infuriating, and she forced school administrators to put me back into regular class.
I was also very sexually advanced for my age (all this happened when I was in kindergarten). I felt sexual urges at the age of 6 years old. Whenever I revealed such thoughts to the people around me, I was scolded and put back into line. All this is to say that as a very young child, I learned to trust no one. I learned that no one would understand me, and I would have to hide my thoughts and myself from everyone. I did not know it then, but my mental health isolated me from my family and my classmates and subjected me to scrutiny from forces of authority. I started experiencing suicidal thoughts at age 11 due to all of this.
The thing with hiding your mental illness from your “loved ones” is that you have to hide your pain as well. When I was 13, I moved to the States (Utah to be specific). I was the target of much bullying as you can imagine – I had an accent, I was curvy and had brown skin – and I was in one of the whitest parts of the county, I might add. I reached out to teachers to help stop the bullying but was met with statements like “that’s not my job.” Once again, I was let down by others, and this time hiding wasn’t good enough. I started cutting. In high school, I started to experience depression and mood swings. I would change plans on my friends last minute. I would find myself really angry or sad seemingly out of nowhere. I was often curt with people, to the point of rudeness. When I didn’t feel like playing a game or doing a certain activity, I sulked in the corner or would often get up and leave. These behaviors caused tensions with my friends and hurt their feelings. I knew there was something wrong; I knew I was different somehow and wanted to find a way to not hurt others with my otherness. But the adults in my life, instead of recognizing that and helping me, punished me for not meeting their expectations.
When I started college, I experienced a year-long depression. I lived with my family at that time and my depression was obvious from my lack of appetite, lack of interest in my hobbies and pretty much overall loss of interest in living. My family could see me suffering but since they did not know how to fix it and could not give me advice, they never even tried to help. My immigrant parents have experienced a lot in life. If I ever wanted legal advice, I could go to my dad, who is a judge. If I wanted help scamming the system for money, I could go to my mom. If I needed help applying to college or finding internships, I could go to my siblings. See, my family knows a lot about things that capitalism forces you to learn about. But they were absolutely no help when it came to mental health.
And that’s what I am trying to speak on here: the loneliness that comes from mental health issues because they are not a normative problem with “normal people” solutions. Junior year of college, I finally sought help from a psychiatrist. Of my own volition, I went to him to seek a diagnosis. I had seen enough in life to know that I wasn’t like everyone else. He diagnosed me with bipolar type 2. To my relief, I finally knew why I felt so misunderstood and misjudged by everyone else. The mood swings, the depressive episodes, the early sexual urges, the constant battle with anxiety. I received a mild OCD diagnosis years later that further filled in the gaps. But I told only two good friends – the idea that I needed to hide my truth from others hadn’t left me yet.
Beyond that, my health started declining in college as well, and I had developed food intolerances to practically every food group. I would be bloated any time I ate anything. I experienced chronic back, stomach and pelvic pain. After years of this, I had to quit my job and fully focus on getting my mental and physical health better. It took me three years, a lot of money, tests, doctors, hospital and instacare visits, many many breakdowns and low lows for me to be diagnosed with endometriosis with comorbidities of interstitial cystitis, pelvic floor dysfunction and irritable bowel syndrome. And it took two surgeries to diagnose me with adenomyosis as well. Here’s where the loneliness of being physically disabled really hit me. I cannot truly put into words the partitioning that occurs when you have a disability. But it’s not hard to imagine it when all the systems like schools, jobs, public buildings, etc., make little to no accommodations for disabilities without isolating those with disability from the rest of society.
Individuals in this society also have no clue how not to “other” the disabled. One of the most obvious and painful ways that I felt sidelined and ignored was how I was treated by doctors.
Doctors were not only mostly unwilling to diagnose my chronic illness – because I looked able-bodied, and also because I am a woman of color seeking their medical attention, who they deemed unworthy of such care – but they also had no idea what the lives of their disabled patients were truly like. In fact, this lack of investment in disabled patients is what grew a wedge between me and my own sister who is a doctor.
There are many more ways I have felt isolated due to my invisible physical disability. For one, because I was sick in a way that no one could see, my family expected me to finish college and get a full-time job afterwards. I would complain about stomach aches, cramping from eating, inability to have a bowel movement for a week, and they would even laugh at me. They had no idea what terrible pain I was in, or, I should say, they didn’t believe me about the terrible pain I was in. Since I have an invisible disability, this often happens to me. I can’t stand up too long without my knees and feet forcing me to go sit down. I may be very picky with what I eat because the quality of meat somewhere may make me sick for the rest of the day. Being in pain may make me extremely irritable, and not getting enough sleep due to a concert or night out is a no-go because I’ll be paying for it for weeks with headaches, and mania triggered due to the lack of sleep. There are a lot of things able-bodied people take for granted that I have now been forced to explain to people around me in order not to upset them or hurt their feelings. I am still terrified of asking for workplace accommodations because I don’t want to lose my job. I have had to quit many jobs because they became undoable, and twice I came out with my bipolar disorder and sought accommodations from employers, only to be met with a refusal. Those experiences have been traumatizing and reinforce this narrative that I need to hide my disability and that no one is obligated to understand and make space for me.
I reluctantly told my family that I was bipolar a few years ago because they continued to place unrealistic expectations on me as I was having a mental health crisis that rendered me unable to hide anymore. Later, I had to tell them about my physical disability, as they expected things of me that I could not physically do. Now I have had to sever my relationship with them due to their inability to make any adjustments to accommodate me in their lives. Once again, I find myself isolated from them because of my disabilities.
My saving grace over the years has been other disabled people. I am lucky enough to have very close friends who have the same or similar physical and mental illnesses as me. We have helped each other out of rock bottom many times. I found it crucial to make close friends with other disabled people. Growing up, I felt that even though I was Pakistani, I didn’t fit in with other Pakistanis, even though I was Muslim, I didn’t fit in with other Muslims, and so on. The problem, I realized, was that to understand me, you had to understand my disabilities, and you had to understand other parts of myself like my queerness. Once I honed in on that, I was able to have more fulfilling relationships. Identifying and relating to others with my identities through the lens of intersectionality was key.
The other good news is that I have now been able to publicly, over social media of course, talk about my disability – and God does it feel good to come out of hiding. I wish now to keep speaking about my disabilities and building my network of disabled people so that we can support and uplift each other. I don’t feel like I can fight my loneliness without other disabled people, their stories and our shared truths. I would like to use my platform as a writer to amplify our stories and help fight the loneliness that millions of disabled people feel. As a writer and director for TV and movies, I feel that one small part I can do is push for onscreen and behind-the-scenes disabled representation. I find that this work helps alleviate my hidden sadness and struggles by putting them out there for many other people to connect with. The antidote to loneliness is connection, and entertainment is how I hope to reach out.
Fatima Liaqat is a comedy writer/director, former BuzzFeed Video producer, and CAPE New Writers Fellow. Her scripts have placed in Austin Film Festival and the WeScreenplay Diverse Voices competition. Fatima has struggled with OCD since childhood and Bipolar Disorder since her teens. In her early twenties her journey with chronic illness began. While working in production, she experienced a major health setback and needed to leave Los Angeles to pursue treatment. Years later, she was diagnosed with Endometriosis and other comorbidities. Fatima strives to write about her experiences with invisible mental and physical disabilities; she also wants to lead a diverse, neurodivergent and disability-inclusive writing room and film crew. Her experiences as a queer, disabled, Muslim, Pakistani immigrant have fueled her to seeking representation onscreen with intersectionality at the forefront. Her pie-in-the-sky career goal is to head a production company that highlights other stories from queer, poc and disabled writers and filmmakers.