Charlie Bickel

@bedtimebluez | contributor
They/them, queer, I am an aspiring writer seeking solidarity and community amongst those living with chronic illnesses in these trying times.
Community Voices

Newly diagnosed

#ThoracicOutletSyndrome

Hey everyone! i was recently diagnosed with venous thoracic outlet syndrome after struggling with a horrible DVT that has not gone away as well as constant nerve pain, numbess in my face, arm, and hand, and swelling. It has been so scary for me. I will most likely have to get surgery because it is so bad. I also have ehlers danlos syndrome and all of the comorbidities that come with it. I was wondering, for anyone who has both, is it possible that this puts you at risk for more vascular compression disorders? I have so many unexplained health issues and I have been researching other vascular compression disorders and I am really wondering if this is something I should bring up to my vascular doctor (things like MALS and SMAS). What are your thoughts? Do you have more than one? #EhlersDanlosSyndrome #EhlersDanlosSociety #MedianArcuateLigamentSyndrome #smas #MALS #vasculardisorders

Community Voices

I no longer feel safe on social media

I am getting to the point where the longer I am on social media apps like instagram, facebook, and tik tok especially, the more unsafe I feel. Every single day I am harassed in the comments. I constantly see my fellow disabled peers, friends, and loved ones being harassed by people too. I have seen people post threats, I have seen subreddit accounts dedicated to accusing disabled people of faking their illnessess. I have seen people's mental health, physical health, and safety in danger because of this, whether a danger to themselves or others. Honestly, this is one of the only online spaces I feel safe. I should not have to hide my experience being disabled, I should be allowed to raise awareness and be honest, but I do not feel safe. I have noticed that the more followers I get (and I am not even like instagram or tik tok famous AT ALL), the more hate I get. I get hate by doctors, I have medical trauma, I get hate by strangers in public, I do not need to get to the point where I do not feel safe online either. Being disabled is so scary, I am scared of my own body and those around me. There is a reason why we are so lonely and isolated beyond just being housebound or sick, it is because so many of us do not feel safe. I have developed agoraphobia because of this. It's unacceptable. And i know i know people will say "do not let it get to you" but it wears on you!!! It builds up and it won't stop!! Don't let it get to me? Do not let people do this! Why is it our responsibility to not let this violence and harassment get to us when it should be their responsibility to unlearn their horrific and abhorrent amount of ableism? Why is the blame always twisted onto us? I am done. I am fed up. I cannot stop my disabilities, and the sicker I get, the more I cannot hide it and the less my illnesses become invisible. Invisible or not, it is unconscionable to be treated this way to the point where I literally fear leaving the house or going online. I've had it.#EhlersDanlos #POTS #ThoracicOutletSyndrome #Ableism #ChronicIllness #InvisibleIllness #visibleillness #Neuropathy

17 people are talking about this
Community Voices

Anyone out there also suffering from TOS? If so. Looking for some pain relief advise. ☹️

2 people are talking about this
Community Voices

Anyone out there also suffering from TOS? If so. Looking for some pain relief advise. ☹️

2 people are talking about this
Community Voices

The financial hell that is applying for SSI while your body is still falling apart

I have really been going through it health wise lately. Six months ago I had to apply for SSI (I do not qualify for SSDI) and I feel like I've lost all hope in life. I've been sick my entire adulthood (I am 27 now), and the past two years in particular have dramatically declined in ways I cannot fathom. I have been in and out of the ER due to complications from so many health problems, and right now I might have to go back. I have hypermobile ehlers-danlos syndrome, POTS, hashimoto's disease, small fiber neuropathy, fibromyalgia, CFS/ME, severe GI issues, and mental illness on top of it. Most of my health problems all stem from the ehlers-danlos. I am currently suffering from severe GI complications potentially needing to be hospitalized as well as struggling greatly financially because you are given no support during the social security application process. For those of you who have applied for SSI, how did you get through the financial hell on top of your declining health? I am on the verge of losing my apartment because of how poor I am and I seriously do not know how anyone does it. The application process is so grueling, terrifying, and long I do not know how much longer I can take like this. How did you get through it and survive? I am starting to lose hope both in my stability physically and how im gonna survive this insurmountable loss of financial/housing stability.#SocialSecurity #Ssi #Ssdi #Disability #EhlersDanlos #hypermobileehlerdanlossyndrome #POTS #Neuropathy #GI

14 people are talking about this
Charlie Bickel

Ehlers-Danlos Syndrome Is a Life-Altering, Serious Disease

I’ve always had something going wrong with my body. Whether it was repeatedly getting injured as a child, being the clumsiest dancer, running on less energy than other kids, ear infections, or tummy aches, I was always experiencing some sort of medical inconvenience. Despite having a laundry list of random symptoms as a child, I was still able to relatively function like the rest of the students my age. Everything changed the second I turned 18. After starting university with a full-ride scholarship, I started experiencing a dramatic increase in chronic pain, dizziness, fainting, gastrointestinal issues, nausea, depression, severe allergies, and debilitating fatigue. It was as if becoming an adult had unleashed the Kraken of debilitating, declining health problems that would never end, ultimately leading me to drop out of college. At age 20, I was diagnosed with fibromyalgia, chronic fatigue syndrome (also known as myalgic encephalomyelitis or CFS/ME), and irritable bowel syndrome (IBS). For the next seven years, I dealt with doctors unwilling to look beyond those conditions, seven years of no improvements, seven years of continual decline in health, seven years of more and more symptoms added, and seven years of more medical neglect and invalidation endured. By the time I was 23, I wanted to give up, and by the age of 25, I could no longer avoid the progressive nature of my confusing health and needed to fight for answers. At 27 years old and after over a decade of my health falling apart, I was finally diagnosed with Ehlers-Danlos syndrome, hypermobility type (hEDS) by a geneticist. Because of my hEDS, I experience many complications and comorbidities such as postural orthostatic tachycardia syndrome (POTS), small fiber neuropathy (SFN), GI issues, chronic pain, chronic fatigue, and plenty of other illnesses involving damn near every letter of the alphabet. All these years of not understanding my body, of wondering if all of my random symptoms had anything to do with each other, if this was in my head, etc. were finally answered. Ehlers-Danlos syndrome is the beast I have yet to tame. Like many zebras before being diagnosed, I knew very little about hEDS. I knew there was more than one type of EDS. I knew that EDS caused soft, stretchy skin and extra bendy joints. I had no idea the number of complications, other parts of the body, and additional symptoms that people with EDS experience. Because EDS is a group of inherited syndromes that are caused by genetic mutations in one’s collagen or collagen-like proteins, many people assume it just affects the skin and joints. That is not only a myth, but a dangerous assumption that can lead to years of neglect and invalidation. Because collagen is found in the vast majority of one’s body such as in our skin, ligaments, bones, organs, blood vessels, gums, and even our eyes, it makes sense that EDS would be a condition that affects one’s entire body. Although hEDS is the most common type of EDS, that does not mean it is necessarily less serious or less severe. While the vascular type of EDS (vEDS) is the most life-threatening, there are many serious and potentially life-threatening complications that can occur to anyone with any type of EDS. EDS is a spectrum disorder meaning not only are there over 13 different types, but that the level of severity, combination of symptoms, and lived experiences are going to be different from person to person even if they have the same type. Some people with hEDS are able to walk without mobility aids, are able to work, etc., while others may be unable to get out of bed and struggle with serious and potentially life-altering complications. I wanted to list some of my daily experiences and symptoms because of how debilitating, dangerous and poorly understood Ehlers-Danlos syndrome can be. We are not just bendy. We are sick. Here is a glimpse of what it’s like living with my genetic disease: 1. I am constantly getting injured. There is not a single day in which I do not sublux at least one joint. I am also prone to dislocations. These subluxations and dislocations have caused me to have many permanent complications such as bursitis in both hips and arthritis throughout my body. I struggle to use my hands due to my hypermobility, tremors, injuries, and joint damage, and often rely on using voice to text on my phone because of it. I struggle to walk or stand for longer than a few minutes without being in constant pain or risking injury. 2. I am always in pain. Even if I may not be experiencing pain directly in my bones or specific areas of injury, I am experiencing significant amounts of musculoskeletal pain on a daily basis. Many people with hEDS are often initially diagnosed with fibromyalgia (myself included) because of the prevalence of chronic widespread pain, sensitivity to touch, and pressure points. 3. I have chronic fatigue. And no, I do not just mean tired from not sleeping well for a few nights. My chronic fatigue causes brain fog, short-term memory issues, cognitive dysfunction, depression, lethargy, limited mobility, poor sleep, and a litany of other manifestations. If I am in pain, I can often push a little bit past it, but when I experience severe fatigue, I cannot function with a brain running on internet as old as AOL dial-up. It’s as if I am being run by a backup generator with limited and selective functioning. 4. I am constantly dizzy. Because of collagen’s prevalence in our blood vessels, many people with hEDS also have POTS. Because our veins are more stretchy, we are more prone to blood pooling, orthostatic intolerance, and various manifestations of dysautonomia/autonomic dysfunctions, POTS being the most common. Because of this, I am dizzy any time I am not laying down or resting. I am prone to fainting, falling, black spots in my vision, nauseousness, lower blood pressure, tachycardia, vertigo, and even migraine and neck/shoulder pain. POTS may not be life-threatening, but is by far one of the most debilitating illnesses I experience thanks to my hEDS. I have spent roughly 75% of the last eight years mostly in bed or at home due to the severity of my hEDS and POTS that comes from it. I rely on taking beta-blockers and I have a port surgically implanted in my chest so that I can have IV fluids on almost a daily basis to decrease the severity of my POTS. I also need to use a mobility aid (most often a rollator walker) any time I leave the house due to my chronic pain and debilitating dizziness and fatigue. 5. I am constantly struggling with gastrointestinal complications. I have IBS that fluctuates dramatically between extreme constipation and extreme diarrhea that is still being investigated by my doctor. I have chronic acid reflux (GERD) that led me to develop a serious complication known as Barrett’s esophagus that causes my esophagus to incorrectly grow intestinal tissue over areas that have been damaged from chronic acid reflux. I will need to get an upper endoscopy every 3-5 years for the rest of my life to prevent/monitor any potentially cancerous growths. I had a hiatal hernia by age 19. I had my gallbladder removed due to gallstones by age 21. I also currently have a protein deficiency due to malabsorption. I have to take medications daily for the rest of my life and routine maintenance testing to look out for any additional damage over time. 6. I have nerve damage. A lot. Because of my constant injuries and general joint instability, I have small fiber peripheral neuropathy that has progressed so much that it has already spread to my hips and made my nerve fiber density in my lower legs and feet almost obsolete. I struggle with nerve pain down my spine and numbness and tingling down my entire left arm frequently due to shoulder and neck instability, subluxations, and dislocations. 7. I have horrible headaches that often turn into migraines on almost a daily basis. Migraines are overwhelmingly common amongst those with hEDS for many different reasons such as CSF leaks, craniocervical instability, chronic pain and tension, fatigue, etc. I have to get injections on my forehead, scalp, neck, and shoulders every three months and it does not solve the problem completely. 8. I am allergic to what seems like almost everything. I am allergic to the vast majority of plants, molds, fungi, dust, etc. native to the area I live in. I am allergic to many perfumes, chemicals, dyes, adhesives, etc. I am allergic to most foods that I eat, and my symptoms abruptly change in type and severity and to what trigger. I am prone to chronic hives, itchiness, congestion, sinus infections, sore throats, diarrhea, nauseousness, and even sometimes swelling and my reactions are always unpredictable. 9. I heal poorly and slowly. On top of my hEDS, I have an auto-inflammatory skin condition called hidradenitis suppurativa which causes acne, cysts, and tunnels on areas of my skin close to my sweat glands that are inflamed. Because of my hEDS, my acne and cysts in those areas of my body (such as under my breasts, my inner thigh, buttocks, etc.) heal poorly, leading to atrophic scarring, open wounds exposed for too long, causing me to be a chronic staph carrier that requires me to take antibiotics long term to prevent serious infections such as MRSA. I have atrophic scarring, unexplained stretch marks, slower healing time after surgeries, and weaker, softer scar tissue. 10. I have many reproductive issues. I struggle with pelvic floor pain, heavy periods, painful cramps, nausea, diarrhea, etc. when menstruating. I’ve had IUDs for the last seven years because I cannot handle the severity of the heaviness and pain from menstruating. I also struggle with bladder issues ranging from phases of incontinence to even bladder retention. While there are many other symptoms and complications I have from my hEDS such as neck instability, rapid hearing loss, TMJ, etc., these are some of the main ones I deal with on a daily basis. Because of the progressive nature of EDS and its complications, my experience at age 27 will not be the same 10 years from now, and I will have more and more issues over time. EDS is more than just hypermobility and stretchy skin. Many people with EDS require mobility aids to move around, lifelong medication management, regular physical therapy, and sometimes surgical interventions. We can be stuck at home, in bed, or even hospitalized long-term. Some of us even have feeding tubes due to severe gastrointestinal complications. EDS is not a one size fits all illness. There are so many symptoms, complications, comorbidities, and levels of severity making no case the same. We cannot let EDS be continuously misunderstood, poorly researched, invalidated, underdiagnosed, or neglected. Whether someone experiences mild EDS or life-threatening, we all deserve to have our stories be validated and treated thoroughly and accurately. We are more than just your flexible party tricks. We have a debilitating, complicated disease that can lead to a low quality of life that we deserve to have improved and cared for. We are zebras who deserve to be heard and seen in a stampede of horses.

Charlie Bickel

Chronically Ill People, 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.

Charlie Bickel

Chronically Ill People, 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.

Charlie Bickel

Chronically Ill People, 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.

Charlie Bickel

Chronically Ill People, 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.