Chronically Ill People, Let's Stop Accusing Others of Faking Their Illnesses
It’s 2014. I am struggling with severe chronic pain, dizziness, gastrointestinal issues, injuries, and declining mental health. Doctor after doctor, fake friend after fake friend, tell me is in my head, that it is only fibromyalgia, that there is nothing they can do, to lose weight, or that it is just anxiety. My health continues to decline, and continues to suffer. Years of invalidation, neglect, and medical abuse lead me to believe that maybe it is in my head, maybe I was faking it, and with that, I started to give up and succumb to the toxic and dangerous beliefs of the medical professionals around me.
It’s 2017. I started joining chronic illness support groups, I started following people with chronic illnesses on Instagram, I started watching youtube videos of younger people like me living with chronic illness. I was not looking for strangers to diagnose me. I was looking for solidarity and support from other people like me. I found chronically ill people my age, and even some who are also LGBTQ+. I learned that people I grew up with also had chronic illnesses that worsened as adults. I found people with professional diagnoses, I found people like me who were undiagnosed or misdiagnosed looking for support and learning to advocate for themselves. I found some of the most nurturing and understanding people online. But I also came across a lot of people, even some who are also chronically ill, who went out of their way to try to prove other disabled people were faking their illnesses, trying to gatekeep the very diagnoses and community they fought for, and often invalidating those who were undiagnosed seeking answers.
At some point or another, most disabled people live their lives undiagnosed. We fight for doctors to listen. We fight for more tests. We fight for the treatment we deserve. Some of us are lucky and have the privilege of obtaining an accurate diagnosis and treatment. Some of us are not. With rampant sexism, racism, classism, etc. in the medical field, not everyone has access to healthcare, people of other minorities are more likely to face medical neglect, discrimination, and severe complications that are even sometimes life-threatening. Everyone’s path to diagnosis and recovery is different. Not everyone has the same luxuries as others. With or without a diagnosis, people deserve to feel like they belong in the disabled community. With or without adequate healthcare, people deserve to have people to reach out to, have people to confide in, and even people to help them navigate this messed-up system.
It’s 2021. I am diagnosed with hypermobile Ehlers-Danlos syndrome by a geneticist who specializes in my condition. Following that diagnosis, I am referred to multiple specialists who help diagnose me with the comorbidities and complications that come with my disease. I was validated and taken seriously for the first time in my life, but because of years of being invalidated by doctors, old friends, and people online, I still deal with feeling like an imposter on a daily basis. It is hard to believe in yourself, know your worth, and know what you deserve when you have spent your whole life thinking it is all in your head or that your illnesses are your fault. Even with an accurate, professional diagnosis, I still fear I will be accused of faking my illnesses or being ostracized in the disabled community. I lost years of my life due to being unable to get out of bed or leave my home, and due to irreparable damage and declining health caused by years of neglect and no answers. I will never gain it back.
Another reason why it may seem easier to accuse others of faking their illnesses is the fact that social media is structured to cater to our interests. On social media sites such as Instagram and Tik Tok, there is an algorithm in place that caters to our interests, identities, what we look for, and patterns they notice. Because of this, if someone is posting a lot about chronic illness or a specific disease that they have, that is the type of content that social media sites will show you or recommend to you. When we are in this loop of constant exposure to chronic illness, it makes our community look much larger than it really is.
The algorithm puts it in a tiny bubble, making it difficult to see the world beyond that. Anytime I go see a new doctor, a new nurse, or have casual or often intrusive conversations with strangers, I am reminded of how rare my disease is and how very few people have heard of it, let alone know someone who has it. While social media catering to your interests is beneficial to find people to relate to, to find content important or useful to you, it also isolates us from the world around us. As a nonbinary queer person, I see a lot of nonbinary and queer influencers online recommended for me to follow, but then in public, I am reminded of how few of us there really are. What a straight person without chronic illnesses is interested in and what they see online is not what I see, and they do not see what I am exposed to either.
Part of the problem we face in the disabled community is a lack of perception of the actual prevalence of chronic illness as a whole versus specific chronic illnesses. The disabled community comprises approximately ¼ of the population. Being disabled in and of itself is not rare. Most people are likely to develop a disability or chronic illness at some point in their life. While we may not all have the same illnesses, and while it may seem like there is a surge of new people being diagnosed with what we have, we have to remind ourselves that being chronically ill by itself is not uncommon and many diseases that we thought were rare are no longer considered rare.
That being said, having a rare or common disease does not determine the severity of the condition you may have. Common diseases like congestive heart failure, lupus, rheumatoid arthritis, and diabetes are often incredibly debilitating and sometimes life-threatening, and those conditions being common does not change the severity or importance of such diseases. People often fear that if people are faking their illnesses, they will affect whether people will take their diseases seriously or not. While that is a valid fear, as many people with serious, debilitating conditions are often invalidated or trivialized, accusing other disabled people of faking their illness or pitting other disabled people against each other will not fix the oppressive and dangerous flaws in our healthcare system today.
Other disabled people are not the problem. People reaching out for health and for those who are undiagnosed seeking validation and answers are not the problem. The rare, very few people who are actually faking are not the problem. The problem lies in a healthcare system rooted in racism, sexism, classism, etc. that actively chooses to not take their patients seriously and put them through neglect and medical trauma. The problem lies in medical research that is biased by not including all types of people. The problem lies in outdated approaches in the medical field that harm patients. The problem lies in the stigma and oppression disabled people face in this country. The problem lies in poverty. The problem lies in a system that does not want to treat us. The problem lies in a world that fails us.
No one deserves to live their lives without answers or treatment. No one deserves to live their lives with invalidation and neglect. We, as a collective community of chronically ill people, have to stand up for each other, believe in each other, and stay together. If we are divided and torn apart, the corrupt and oppressive medical industry and ableist structures of society will win.
Getty image by Alex Potemkin.