Charis Hill

@charis-hill | contributor
Charis is a professional model, blogger, and chronic disease advocate. She juggles diagnoses of ankylosing spondylitis, severe major depressive disorder, anxiety and PTSD. When able, she enjoys sewing, cooking, gardening, soccer, running, and her two cats Dora and Juno.
Charis Hill

What You Don't See as I Live With an Invisible Illness

You may look at my young, healthy appearing body and ask, “You’re sick? Why don’t you suck it up and try harder? Why haven’t you tried XYZ?” What you see is the poker face I’ve spent years creating, the one that allows me to pass in an able-bodied world so I don’t spend every moment defending my disease to “faux cure evangelists.” What you don’t see is that I’m faking health to preserve my dignity, energy, and ability to accomplish whatever task it is I have to do before I collapse. Faking it is hard, but it’s easier than displaying my pain and then having to use more energy to defend my body’s permanent sickness. What you don’t see are the grimaces I make when I’m in a safe place, when I allow myself to actually respond to the pain that is unrelenting, the pain that I do my best to ignore in public. What you don’t see is the fear underlying my existence. Will I die young? Will I lose healthcare? What if my disability is denied? Will this new treatment work? Will I become homeless? Will I find a forever partner? What you don’t see is my squirming in bed from the pulsing, unrelenting pain in my joints. You don’t see the contortions I’m capable of just to find a millisecond of relief from the pain that keeps me awake hours into the nascent morning. What you don’t see is the self-doubt that has has skyrocketed after years of trivialization and stigmatization, as sickness plummets me deeper into depression and unhealth. You don’t see me crying in bed, arm in mouth, trying not to scream from the pain and anger at all the things I can no longer do and the agency I have lost as an individual. You do not see the friends I have lost because I can no longer show up for activities that once defined me. You do not see the challenge in making new friends because I am largely homebound. You might look at me and wish you didn’t have to work, either, that maybe you’d like to “stay home all the time and play hooky.” What you don’t hear when I am in a crowd is a constant replay in my mind of the things people have said to my face: “You’re too young to be sick.” “Young people don’t get arthritis.” “But…you look so good!” “I think of you when I get sick and count my blessings.” “You should exercise.” “You know, there are cures out there for people like you.” “You just want to be disabled.” “I hope you get better soon!” “You should try this new supplement.” “Use your willpower to get out of that wheelchair.” What you don’t hear are the noises I make when I don’t think anyone will hear me, when it feels as if my body can’t handle it anymore. You don’t witness the trips to the pharmacy where I learn my refill has been denied, again. You don’t know that then I become the liaison between doctors and pharmacists and insurance to work it out. It shouldn’t be my job, but it falls to me. You don’t hear the exasperation in my voice when I call a friend asking if I should go to the emergency room because I can’t handle any more pain, even though I know the hospital will make me wait for hours and then treat me like a drug seeker. You don’t count the multiple doctor visits I have each month, the time I spend in the waiting room, the routine labs with the multiple tubes of blood I fill. You don’t witness the wrenching pain of lying still in the MRI machine for 10 minute segments repeated for an hour, how my body stiffens and goes into a flare for a week afterwards. You don’t hear the specialist say, “Let’s try one last treatment,” when it really is the last treatment approved to treat my disease, and the anguish when I wonder what will happen if that one fails, too. You don’t see the pills I count out each week, and their side effects I have to plan around. You don’t see the pain. The depression. The struggle to be resilient. The money I worry over. The paperwork I have to complete with achy hands. You don’t see the work of the professional patient when you say I need to suck it up and try harder, or that I haven’t tried enough treatments, or that it’s all in my head. The medical establishment is my office, and my colleagues are the nurses, doctors, and pharmacists. Believe me, I’d trade you jobs in a heartbeat! Perhaps you wonder why I don’t just tell you when I’m hurting. Maybe you think I don’t want your help? And I can’t help but imagine that maybe if you really knew, you’d hate this for me. Maybe you’d pity me and you wouldn’t know what to say or suggest that could ever help or make anything at all better. Maybe you’d feel helpless. Maybe if you really knew, it would be as overwhelming for you as it is for me. That’s scary. And I get it. I get all these things. I used to be healthy, too. I was a college athlete. I worked more than full-time. I ran marathons. I admit that I used to think sick people should just try harder. I admit that I told people what I thought would help them. I wanted to fix people’s bodies myself! I thought I was doing something to make everything better, when in reality I was silencing their sickness with advice that made me feel better about myself. I was contributing to their feelings of being invisible. It kept me safe from having to really listen to what they were going through. It protected me from being overwhelmed myself. And now that I’m living on the other side of healthy, I am trying to help people understand the toll it can take. I know you want to help, but please, just know that you can’t take away my pain and disease with treatment advice. You can’t fix me. What you can do is listen and validate my experiences – and believe me, I understand that will take some vulnerability on your part. I promise I’ll be able to talk to you more openly about my disease if you listen, rather than try to fix my brokenness with cures I’ve already tried, treatments I can’t afford, and advice that is insensitive. I want to be seen for who I am, supported for what I’m fighting, and trusted with my own body. Oh, and there are two other ways you can help: chocolate cake and money. Those fix everything. We want to hear your story. Become a Mighty contributor here . Gettyimage by: SensorSpot

Charis Hill

Letter to Airline Employees From a Person With an Invisible Disability

Dear gate agents and flight attendants, I’m one of those passengers who “shouldn’t” be in the pre-board line. You know the ones. I’m dressed nicely and I have makeup on; I appear healthy and able-bodied. I don’t use a wheelchair. I’m young. I sometimes sit on the floor and stretch. Aside from my pillow and sometimes my cane and wrist braces, there is not much evidence of why I’m there. According to popular opinion, I don’t look disabled. You want to do your job well, and part of that is accommodating people with disabilities. But often, when I request a pre-board pass, you look at me like maybe I’m cheating, like maybe I learned a trick somewhere just to get a better seat or not wait in line. Maybe you think I’m smug or even entitled. Sometimes you question if I need the pre-board pass on the basis of disability, right after you sweetly, wordlessly hand one to the woman in front of me – the soft-spoken, grey-haired, hunched-over one using her cane. I have learned to expect to be pre-judged for pre-boarding, but that hasn’t made me feel any better when it happens. I try not to think about the other healthy-appearing disabled people who have stopped asking for accommodations when they fly, who now try instead to blend in – to reduce stigma and the possible trauma of an error of assumption and ensuing judgment. We hear stories like this all the time about young-, healthy-, able-appearing people who have disabled placards in their cars and receive nasty stares, notes, and even comments of disdain and judgment. But it doesn’t just happen when people drive. It happens when we fly, too, when we can’t carry our disabled placards around our necks. Maybe we should. Would that help? I’m hurting. I’m doing everything I can to appear healthy. If I showed up looking how I actually feel, you might not even let me on the plane. Besides, I still want to look good on the outside; it helps me feel more confident. I want you to know that I wish I felt as good as I appear, and I would gladly trade a healthy body for the one I have. Dear flight attendants, I do not like boarding the plane before everyone else. I don’t like that it calls attention to me and means I will be on the plane longer. I fear I’ll be asked to give my seat to someone who fits the disabled image better than me, as if looking at me fills the criteria for that judgment. There’s no way you could know the debilitating pain I try to endure every moment just by looking at me. I always sit in an aisle seat near the front of the plane so I can move my legs more easily during the flight. When I can, I sit in the very front row so I can stretch without having to get up so often. On shorter flights, I sometimes even treat myself to the front row window seat because I can squeeze past my neighbors to stretch without bothering them as much. How I miss sitting by the window all the time! I’m also one of those passengers who requests a can (not just a cup) of orange juice or water multiple times during the flight. I see the disdain on your face, and I hear it in your pert responses. I wish I could tell you with one glance that I need those extra drinks because without them I could become a healthcare emergency mid-flight. I wish I could tell you that I need those drinks to take my pain pills, and so my joints are lubricated enough to get off the plane when we land. I wish I could tell you with one blink that I miss the days when I would purposefully drink very little so I would not have to get up to pee. I wish I could tell you these things every time you give me that “look” – you know the one. I try so very hard to be gracious, because I know you experience a lot of rude people. But the truth is that flying is now one of my least favorite things. It causes my pain and fatigue to grow exponentially, along with my fear of the germs that could attack my weak immune system and send me to the hospital. Flying somewhere used to be a treat; now it is a punishment that takes days or more to recover from. Attendants, you have a lot to respond to at work. The babies who cry when their ears pop, people who go into a rage when they have to check a carry-on bag last minute, people who are traveling to funerals, children traveling without guardians, people who arrive drunk or with a contagious flu, the pilots who need their bathroom breaks. You probably also think about home and when you will return to your own bed. I applaud you for the multi-tasking you do so well, and I understand I am just one more demand of your complicated job. Yet I hope this letter helps shed light on some thoughts that go on in the minds of many young, able-appearing people with disabilities who fly. For the times you’ve seen my pain and offered a little something extra, thank you. For the times you have responded with grace even when I am too tired to give you the smile and thanks you deserve, thank you. And for reading this letter, thank you. Follow this journey on Being Charis. We want to hear your story. Become a Mighty contributor here .

Charis Hill

Letter to Airline Employees From a Person With an Invisible Disability

Dear gate agents and flight attendants, I’m one of those passengers who “shouldn’t” be in the pre-board line. You know the ones. I’m dressed nicely and I have makeup on; I appear healthy and able-bodied. I don’t use a wheelchair. I’m young. I sometimes sit on the floor and stretch. Aside from my pillow and sometimes my cane and wrist braces, there is not much evidence of why I’m there. According to popular opinion, I don’t look disabled. You want to do your job well, and part of that is accommodating people with disabilities. But often, when I request a pre-board pass, you look at me like maybe I’m cheating, like maybe I learned a trick somewhere just to get a better seat or not wait in line. Maybe you think I’m smug or even entitled. Sometimes you question if I need the pre-board pass on the basis of disability, right after you sweetly, wordlessly hand one to the woman in front of me – the soft-spoken, grey-haired, hunched-over one using her cane. I have learned to expect to be pre-judged for pre-boarding, but that hasn’t made me feel any better when it happens. I try not to think about the other healthy-appearing disabled people who have stopped asking for accommodations when they fly, who now try instead to blend in – to reduce stigma and the possible trauma of an error of assumption and ensuing judgment. We hear stories like this all the time about young-, healthy-, able-appearing people who have disabled placards in their cars and receive nasty stares, notes, and even comments of disdain and judgment. But it doesn’t just happen when people drive. It happens when we fly, too, when we can’t carry our disabled placards around our necks. Maybe we should. Would that help? I’m hurting. I’m doing everything I can to appear healthy. If I showed up looking how I actually feel, you might not even let me on the plane. Besides, I still want to look good on the outside; it helps me feel more confident. I want you to know that I wish I felt as good as I appear, and I would gladly trade a healthy body for the one I have. Dear flight attendants, I do not like boarding the plane before everyone else. I don’t like that it calls attention to me and means I will be on the plane longer. I fear I’ll be asked to give my seat to someone who fits the disabled image better than me, as if looking at me fills the criteria for that judgment. There’s no way you could know the debilitating pain I try to endure every moment just by looking at me. I always sit in an aisle seat near the front of the plane so I can move my legs more easily during the flight. When I can, I sit in the very front row so I can stretch without having to get up so often. On shorter flights, I sometimes even treat myself to the front row window seat because I can squeeze past my neighbors to stretch without bothering them as much. How I miss sitting by the window all the time! I’m also one of those passengers who requests a can (not just a cup) of orange juice or water multiple times during the flight. I see the disdain on your face, and I hear it in your pert responses. I wish I could tell you with one glance that I need those extra drinks because without them I could become a healthcare emergency mid-flight. I wish I could tell you that I need those drinks to take my pain pills, and so my joints are lubricated enough to get off the plane when we land. I wish I could tell you with one blink that I miss the days when I would purposefully drink very little so I would not have to get up to pee. I wish I could tell you these things every time you give me that “look” – you know the one. I try so very hard to be gracious, because I know you experience a lot of rude people. But the truth is that flying is now one of my least favorite things. It causes my pain and fatigue to grow exponentially, along with my fear of the germs that could attack my weak immune system and send me to the hospital. Flying somewhere used to be a treat; now it is a punishment that takes days or more to recover from. Attendants, you have a lot to respond to at work. The babies who cry when their ears pop, people who go into a rage when they have to check a carry-on bag last minute, people who are traveling to funerals, children traveling without guardians, people who arrive drunk or with a contagious flu, the pilots who need their bathroom breaks. You probably also think about home and when you will return to your own bed. I applaud you for the multi-tasking you do so well, and I understand I am just one more demand of your complicated job. Yet I hope this letter helps shed light on some thoughts that go on in the minds of many young, able-appearing people with disabilities who fly. For the times you’ve seen my pain and offered a little something extra, thank you. For the times you have responded with grace even when I am too tired to give you the smile and thanks you deserve, thank you. And for reading this letter, thank you. Follow this journey on Being Charis. We want to hear your story. Become a Mighty contributor here .

Charis Hill

Dear LA Times: Ankylosing Spondylitis Isn't Rare

Earlier this week the LA Times published an article about Dodgers’ starter Franklin Gutierrez being placed on the 10-day disabled list due to his rare condition, ankylosing spondylitis (AS). I happen to be an ankylosing spondylitis patient myself, and I can vouchsafe that AS is most certainly not a rare disease. Ankylosing spondylitis belongs to a category of diseases called spondyloarthritis or spondylitis. At least 2.7 million Americans have a form of spondylitis — that’s more than ALS/Lou Gehrig’s Disease, cystic fibrosis, and multiple sclerosis combined. According to the National Institutes for Health, rare diseases “are diseases that affect fewer than 200,000 people in the United States.” We are definitely not rare. As unobtrusively as the world revolves around fast news (or vice versa), it may seem finicky to point out this one instance of misinformation, but my disease is misrepresented as “rare” quite often (even in articles about me after I’ve pointedly informed the reporter). Weekly, I come across errors printed not only in the news, but also on medical information websites that are meant to help patients learn about the disease. These seemingly minor misconceptions about AS are misleading, especially for those with symptoms of the disease. Shouldn’t these sites employ better tactics to dispel misinformed “facts”? Here is some context: As a woman, I grew up believing AS was only a man’s disease. It took 13-plus years for me to even seek care for my symptoms because I never once considered that I could inherit AS from my father. I spent over a decade explaining away aches and pains on imaginary causes, only to discover after I was diagnosed that those symptoms were all red flags for the disease. Studies now show that AS is much more prevalent in women than previously believed, though there are still specialists who refuse to diagnose women with the disease. I grew up within a context where my symptoms would not have been granted an audience by a majority of doctors who specialize in AS, much less people with the disease. I feel I would be doing an injustice by not calling out an error in reporting that supports the myth that fewer people have a disease than actually do. Ankylosing spondylitis not being rare does not make the disease any less severe, however. It’s horrendous. My breath is sucked from me each and every time I realize how much it impacts every breath I take. Ankylosing spondylitis is a severe inflammatory disease that primarily attacks the spine and sacroiliac (SI) joints (this is called axial involvement), but can also affect the joints of extremities, like shoulders, wrists, fingers, knees, feet, and toes (this is called peripheral involvement). AS is also a systemic (whole-body) disease, which means it can affect other parts of the body like the eyes, skin, lungs, heart, and gastrointestinal system. In severe cases, the disease can cause bone spurs to form and fuse the spine together in a fixed column of fragile bone, making a person permanently hunchbacked in the process. In less advanced cases, AS can cause significant discomfort, limit range of motion, and progressively stiffen various joints in the body. All of this chaos in the body causes pain, and because the body is fighting against constant inflammation it can also cause considerable fatigue. Treatments vary, but for many with AS, an effective medical treatment can be a biologic drug — a specialty medication that halts or slows the body’s natural immune response to its own inflammation (biologics attack the immune system, so patients are more susceptible to infections). AS symptoms are often also managed with a mixture of non-steroidal anti-inflammatories (NSAIDs), steroids, pain medication, disease modifying anti-rheumatic drugs (DMARDs), diet and exercise. I do not know the specifics of Dodgers’ outfielder Gutierrez’s treatment and disease management other than what was listed in the LA Times article. I do know, however, that his journey is not an unusual one for people with AS. People with AS often find that rest can cause painful stiffness while movement and activity can relieve this stiffness to a certain extent. This was why I myself loved sports so much: playing a 90-minute soccer game was the only time I did not feel pain throughout college. But it ended up that my disease was moving faster than my body when I was diagnosed in 2013, and my health now continues to decline. I suspect Gutierrez will return after 10 days off and continue the season, but he will not have been cured in that time from a short-term sickness like the flu. There is no cure for AS; and the prognosis, severity, and treatment are different for every single person who has the disease. While ankylosing spondylitis is statistically not rare, as I shared above, we who have it often feel it is rare because we do not (yet) get a lot of attention. Even our own doctors do not always know how to properly treat it, much less diagnose it. For this reason, it is even more important that articles like this undergo a medical review by a trained specialist. Misinformation about diseases that affect a considerable proportion of the population is harmful not only to those who have the disease but also to those displaying symptoms who could dismiss it as “too rare for me to get.” For more information about ankylosing spondylitis and related diseases, watch this short video and visit www.spondylitis.org. Editor’s note: Consult a doctor or medical professional for any questions you have concerning your health, and before starting or stopping any medication. We want to hear your story. Become a Mighty contributor here.

Charis Hill

Dear LA Times: Ankylosing Spondylitis Isn't Rare

Earlier this week the LA Times published an article about Dodgers’ starter Franklin Gutierrez being placed on the 10-day disabled list due to his rare condition, ankylosing spondylitis (AS). I happen to be an ankylosing spondylitis patient myself, and I can vouchsafe that AS is most certainly not a rare disease. Ankylosing spondylitis belongs to a category of diseases called spondyloarthritis or spondylitis. At least 2.7 million Americans have a form of spondylitis — that’s more than ALS/Lou Gehrig’s Disease, cystic fibrosis, and multiple sclerosis combined. According to the National Institutes for Health, rare diseases “are diseases that affect fewer than 200,000 people in the United States.” We are definitely not rare. As unobtrusively as the world revolves around fast news (or vice versa), it may seem finicky to point out this one instance of misinformation, but my disease is misrepresented as “rare” quite often (even in articles about me after I’ve pointedly informed the reporter). Weekly, I come across errors printed not only in the news, but also on medical information websites that are meant to help patients learn about the disease. These seemingly minor misconceptions about AS are misleading, especially for those with symptoms of the disease. Shouldn’t these sites employ better tactics to dispel misinformed “facts”? Here is some context: As a woman, I grew up believing AS was only a man’s disease. It took 13-plus years for me to even seek care for my symptoms because I never once considered that I could inherit AS from my father. I spent over a decade explaining away aches and pains on imaginary causes, only to discover after I was diagnosed that those symptoms were all red flags for the disease. Studies now show that AS is much more prevalent in women than previously believed, though there are still specialists who refuse to diagnose women with the disease. I grew up within a context where my symptoms would not have been granted an audience by a majority of doctors who specialize in AS, much less people with the disease. I feel I would be doing an injustice by not calling out an error in reporting that supports the myth that fewer people have a disease than actually do. Ankylosing spondylitis not being rare does not make the disease any less severe, however. It’s horrendous. My breath is sucked from me each and every time I realize how much it impacts every breath I take. Ankylosing spondylitis is a severe inflammatory disease that primarily attacks the spine and sacroiliac (SI) joints (this is called axial involvement), but can also affect the joints of extremities, like shoulders, wrists, fingers, knees, feet, and toes (this is called peripheral involvement). AS is also a systemic (whole-body) disease, which means it can affect other parts of the body like the eyes, skin, lungs, heart, and gastrointestinal system. In severe cases, the disease can cause bone spurs to form and fuse the spine together in a fixed column of fragile bone, making a person permanently hunchbacked in the process. In less advanced cases, AS can cause significant discomfort, limit range of motion, and progressively stiffen various joints in the body. All of this chaos in the body causes pain, and because the body is fighting against constant inflammation it can also cause considerable fatigue. Treatments vary, but for many with AS, an effective medical treatment can be a biologic drug — a specialty medication that halts or slows the body’s natural immune response to its own inflammation (biologics attack the immune system, so patients are more susceptible to infections). AS symptoms are often also managed with a mixture of non-steroidal anti-inflammatories (NSAIDs), steroids, pain medication, disease modifying anti-rheumatic drugs (DMARDs), diet and exercise. I do not know the specifics of Dodgers’ outfielder Gutierrez’s treatment and disease management other than what was listed in the LA Times article. I do know, however, that his journey is not an unusual one for people with AS. People with AS often find that rest can cause painful stiffness while movement and activity can relieve this stiffness to a certain extent. This was why I myself loved sports so much: playing a 90-minute soccer game was the only time I did not feel pain throughout college. But it ended up that my disease was moving faster than my body when I was diagnosed in 2013, and my health now continues to decline. I suspect Gutierrez will return after 10 days off and continue the season, but he will not have been cured in that time from a short-term sickness like the flu. There is no cure for AS; and the prognosis, severity, and treatment are different for every single person who has the disease. While ankylosing spondylitis is statistically not rare, as I shared above, we who have it often feel it is rare because we do not (yet) get a lot of attention. Even our own doctors do not always know how to properly treat it, much less diagnose it. For this reason, it is even more important that articles like this undergo a medical review by a trained specialist. Misinformation about diseases that affect a considerable proportion of the population is harmful not only to those who have the disease but also to those displaying symptoms who could dismiss it as “too rare for me to get.” For more information about ankylosing spondylitis and related diseases, watch this short video and visit www.spondylitis.org. Editor’s note: Consult a doctor or medical professional for any questions you have concerning your health, and before starting or stopping any medication. We want to hear your story. Become a Mighty contributor here.

Charis Hill

Being Disabled Is a Job

I’ve heard some say disability benefits are unnecessary hand-outs for people who should just die off, and why should hard-working people foot the bill for people who are lazy, whose lives mean nothing? The disability process itself mirrors these same sentiments – the three  to five years (average) process for applying, fighting for, and receiving disability in the USA is by its nature a grueling process, with analysts hired to deny applicants not once, but twice (standard procedure), forcing the applicant to appeal their case twice over several months before a hearing is granted, which then takes years to schedule due to a shortage of judges. It is a process intended to force people to give up. You usually have to be literally dying to be automatically granted disability in the USA. Disability benefits are actually a paycheck for so many people whose lives revolve around the more-than-full-time job of survival against all odds: navigating access to doctors and treatments on top of physically getting through each day and finding a way to achieve an acceptable quality of life. It’s difficult to understand unless you take the time to learn how hard many people with disabilities work. On top of managing their own healthcare and lives, many people who receive disability benefits are working to reduce the number of people who will need disability in the future by influencing research, treatments and even cures. Here are some contributions disabled people make daily (individualized): A person who shares their story on behalf of millions of others with their condition makes a substantial difference in people’s lives who feel profoundly alone and unheard, whether through legislative advocacy, fundraising, community events, or with doctor groups. A patient who spends 20-40+ hours per week doing health-related activities (doctor appointments, picking up/sorting/administering medications and treatments, movement/physical therapy/exercise, disputing claims/denials and handling bills, contacting pharmacies and insurance companies) is educating their providers, insurance representatives, and even elected representatives that patients are real, complex, and diverse, and rely on well-researched care and quality access to providers and treatment. A person who draws their blood daily for research to find what causes their rare disease, even though they are on the brink of death every day and cannot afford to lose more blood, is literally putting their life on the line so that future lives will be saved. A patient who leads a support group for people with rare or severe chronic disease is a mentor for both veteran and newly-diagnosed patients who have never met anyone with their condition and who need someone to hold their hand. Patient-led support groups are vital where professionals are not able to connect with the patient experience in the same way. A person who begins a blog about their journey with disability or disease becomes an automatic educational and emotional resource – and mentor. A story on paper becomes an archive of experiences that others can learn from or relate to indefinitely. A patient whose life is centered around a narrative of invisible pain, disease progression, healthcare, mobility device usage (or not), will always be a spokesperson for their disease or condition without ever asking for it. They often learn how to ask questions, dig deep, educate their friends and family, and see right through fake promises or cures from years of practice – and they can’t ever quit this work. Without collective knowledge from millions of patients pooling their self-advocacy together, each newly diagnosed patient for any disease or condition would have to rewrite the handbook. A person who uses all their energy to survive just one more day is fighting with all they have. They know what it means to dig deep and find answers when it seems there are none, and handle pain where an able-bodied person couldn’t. We can all learn from this resolve to survive. Professional patients do not get paid, but their work is still work, with no time off. Believe me, if there were paid positions for disabled people doing a kicka$$ job of surviving and taking care of themselves, they would have already applied en masse. For people who struggle every day to get out of bed (or not), manage their health, share an educational post online, and keep a roof over their heads; their most important job is life or death, not paycheck vs poverty.  However, many patients in these situations are fighting both for their life and struggling financially. They exist in a life or death and “paycheck” vs. poverty continuum (now’s a good time to share that people living with a disability are twice as likely to live in poverty than people not living with a disability). If disability benefits could be seen as a paycheck for people who do not fit the current definition of work, whose unchosen work is vitally important to future generations, where could that lead us? If we recognized, through faster and more generous disability approvals, that disabled bodies and minds are also capable bodies and minds that do unattractive essential work that helps glue society together (i.e. we need both garbage workers and presidents), where could that lead us? If the goals are to reduce stigma, deaths (including by suicide), and improve the quality of life for people with disabilities as well the lives of their caretakers, doctors, communities, and the world, where could living wages for disabled people lead us? This is not a request to recognize lesser-than achievements or abilities in an inspirational way. It’s a shift in thinking towards recognizing that people can do amazing things whether they are fighting a degenerative chronic disease, making $100k per year, or both.  It’s a shift to recognizing that working for pay vs. fighting to survive should not be seen as greater vs. worse, lucky vs. unlucky, happy vs. sad – it shouldn’t be “vs.” anything! If someone works 10 times harder than another just to brush their teeth, work five or 10 hours per week (or make it through all their doctor appointments), manage their health, or go to bed, these must be recognized not as inspiration porn but as equally valid successes. It shouldn’t matter that some are working hard to fight an incurable disease 24/7 while others may be leading a company with perfect health – they’re both using the same kind of cells in their body and brain to be successful within their realm of ability. We all have limits; we just need to stop defining those limitations based solely on the experience of able-bodied people. If we continue to define success using able-bodied norms (and the size of people’s bank accounts), we support assumptions that “significant physical or mental hurdles” and “amazing contributions to society” can’t exist in the same sentence. We, the disabled, don’t want pity. We don’t want to be inspiring. We want to be seen and recognized equally. We want to be acknowledged financially for the contributions we make to society that are equally as valid as able-bodied people. Because many of us are working harder than a majority of the population to achieve anything at all. Oh, and the disability benefits? They’re not icing on the cake. They’re essential to our survival. *I speak only from my own experience. My story and my words do not represent all people living with disabilities. Our lives and our stories are as varied as the cells in our bodies.* Follow this journey on Being Charis. We want to hear your story. Become a Mighty contributor here. Thinkstock photo by MagMos.

Charis Hill

Being Disabled Is a Job

I’ve heard some say disability benefits are unnecessary hand-outs for people who should just die off, and why should hard-working people foot the bill for people who are lazy, whose lives mean nothing? The disability process itself mirrors these same sentiments – the three  to five years (average) process for applying, fighting for, and receiving disability in the USA is by its nature a grueling process, with analysts hired to deny applicants not once, but twice (standard procedure), forcing the applicant to appeal their case twice over several months before a hearing is granted, which then takes years to schedule due to a shortage of judges. It is a process intended to force people to give up. You usually have to be literally dying to be automatically granted disability in the USA. Disability benefits are actually a paycheck for so many people whose lives revolve around the more-than-full-time job of survival against all odds: navigating access to doctors and treatments on top of physically getting through each day and finding a way to achieve an acceptable quality of life. It’s difficult to understand unless you take the time to learn how hard many people with disabilities work. On top of managing their own healthcare and lives, many people who receive disability benefits are working to reduce the number of people who will need disability in the future by influencing research, treatments and even cures. Here are some contributions disabled people make daily (individualized): A person who shares their story on behalf of millions of others with their condition makes a substantial difference in people’s lives who feel profoundly alone and unheard, whether through legislative advocacy, fundraising, community events, or with doctor groups. A patient who spends 20-40+ hours per week doing health-related activities (doctor appointments, picking up/sorting/administering medications and treatments, movement/physical therapy/exercise, disputing claims/denials and handling bills, contacting pharmacies and insurance companies) is educating their providers, insurance representatives, and even elected representatives that patients are real, complex, and diverse, and rely on well-researched care and quality access to providers and treatment. A person who draws their blood daily for research to find what causes their rare disease, even though they are on the brink of death every day and cannot afford to lose more blood, is literally putting their life on the line so that future lives will be saved. A patient who leads a support group for people with rare or severe chronic disease is a mentor for both veteran and newly-diagnosed patients who have never met anyone with their condition and who need someone to hold their hand. Patient-led support groups are vital where professionals are not able to connect with the patient experience in the same way. A person who begins a blog about their journey with disability or disease becomes an automatic educational and emotional resource – and mentor. A story on paper becomes an archive of experiences that others can learn from or relate to indefinitely. A patient whose life is centered around a narrative of invisible pain, disease progression, healthcare, mobility device usage (or not), will always be a spokesperson for their disease or condition without ever asking for it. They often learn how to ask questions, dig deep, educate their friends and family, and see right through fake promises or cures from years of practice – and they can’t ever quit this work. Without collective knowledge from millions of patients pooling their self-advocacy together, each newly diagnosed patient for any disease or condition would have to rewrite the handbook. A person who uses all their energy to survive just one more day is fighting with all they have. They know what it means to dig deep and find answers when it seems there are none, and handle pain where an able-bodied person couldn’t. We can all learn from this resolve to survive. Professional patients do not get paid, but their work is still work, with no time off. Believe me, if there were paid positions for disabled people doing a kicka$$ job of surviving and taking care of themselves, they would have already applied en masse. For people who struggle every day to get out of bed (or not), manage their health, share an educational post online, and keep a roof over their heads; their most important job is life or death, not paycheck vs poverty.  However, many patients in these situations are fighting both for their life and struggling financially. They exist in a life or death and “paycheck” vs. poverty continuum (now’s a good time to share that people living with a disability are twice as likely to live in poverty than people not living with a disability). If disability benefits could be seen as a paycheck for people who do not fit the current definition of work, whose unchosen work is vitally important to future generations, where could that lead us? If we recognized, through faster and more generous disability approvals, that disabled bodies and minds are also capable bodies and minds that do unattractive essential work that helps glue society together (i.e. we need both garbage workers and presidents), where could that lead us? If the goals are to reduce stigma, deaths (including by suicide), and improve the quality of life for people with disabilities as well the lives of their caretakers, doctors, communities, and the world, where could living wages for disabled people lead us? This is not a request to recognize lesser-than achievements or abilities in an inspirational way. It’s a shift in thinking towards recognizing that people can do amazing things whether they are fighting a degenerative chronic disease, making $100k per year, or both.  It’s a shift to recognizing that working for pay vs. fighting to survive should not be seen as greater vs. worse, lucky vs. unlucky, happy vs. sad – it shouldn’t be “vs.” anything! If someone works 10 times harder than another just to brush their teeth, work five or 10 hours per week (or make it through all their doctor appointments), manage their health, or go to bed, these must be recognized not as inspiration porn but as equally valid successes. It shouldn’t matter that some are working hard to fight an incurable disease 24/7 while others may be leading a company with perfect health – they’re both using the same kind of cells in their body and brain to be successful within their realm of ability. We all have limits; we just need to stop defining those limitations based solely on the experience of able-bodied people. If we continue to define success using able-bodied norms (and the size of people’s bank accounts), we support assumptions that “significant physical or mental hurdles” and “amazing contributions to society” can’t exist in the same sentence. We, the disabled, don’t want pity. We don’t want to be inspiring. We want to be seen and recognized equally. We want to be acknowledged financially for the contributions we make to society that are equally as valid as able-bodied people. Because many of us are working harder than a majority of the population to achieve anything at all. Oh, and the disability benefits? They’re not icing on the cake. They’re essential to our survival. *I speak only from my own experience. My story and my words do not represent all people living with disabilities. Our lives and our stories are as varied as the cells in our bodies.* Follow this journey on Being Charis. We want to hear your story. Become a Mighty contributor here. Thinkstock photo by MagMos.

Charis Hill

Being Disabled Is a Job

I’ve heard some say disability benefits are unnecessary hand-outs for people who should just die off, and why should hard-working people foot the bill for people who are lazy, whose lives mean nothing? The disability process itself mirrors these same sentiments – the three  to five years (average) process for applying, fighting for, and receiving disability in the USA is by its nature a grueling process, with analysts hired to deny applicants not once, but twice (standard procedure), forcing the applicant to appeal their case twice over several months before a hearing is granted, which then takes years to schedule due to a shortage of judges. It is a process intended to force people to give up. You usually have to be literally dying to be automatically granted disability in the USA. Disability benefits are actually a paycheck for so many people whose lives revolve around the more-than-full-time job of survival against all odds: navigating access to doctors and treatments on top of physically getting through each day and finding a way to achieve an acceptable quality of life. It’s difficult to understand unless you take the time to learn how hard many people with disabilities work. On top of managing their own healthcare and lives, many people who receive disability benefits are working to reduce the number of people who will need disability in the future by influencing research, treatments and even cures. Here are some contributions disabled people make daily (individualized): A person who shares their story on behalf of millions of others with their condition makes a substantial difference in people’s lives who feel profoundly alone and unheard, whether through legislative advocacy, fundraising, community events, or with doctor groups. A patient who spends 20-40+ hours per week doing health-related activities (doctor appointments, picking up/sorting/administering medications and treatments, movement/physical therapy/exercise, disputing claims/denials and handling bills, contacting pharmacies and insurance companies) is educating their providers, insurance representatives, and even elected representatives that patients are real, complex, and diverse, and rely on well-researched care and quality access to providers and treatment. A person who draws their blood daily for research to find what causes their rare disease, even though they are on the brink of death every day and cannot afford to lose more blood, is literally putting their life on the line so that future lives will be saved. A patient who leads a support group for people with rare or severe chronic disease is a mentor for both veteran and newly-diagnosed patients who have never met anyone with their condition and who need someone to hold their hand. Patient-led support groups are vital where professionals are not able to connect with the patient experience in the same way. A person who begins a blog about their journey with disability or disease becomes an automatic educational and emotional resource – and mentor. A story on paper becomes an archive of experiences that others can learn from or relate to indefinitely. A patient whose life is centered around a narrative of invisible pain, disease progression, healthcare, mobility device usage (or not), will always be a spokesperson for their disease or condition without ever asking for it. They often learn how to ask questions, dig deep, educate their friends and family, and see right through fake promises or cures from years of practice – and they can’t ever quit this work. Without collective knowledge from millions of patients pooling their self-advocacy together, each newly diagnosed patient for any disease or condition would have to rewrite the handbook. A person who uses all their energy to survive just one more day is fighting with all they have. They know what it means to dig deep and find answers when it seems there are none, and handle pain where an able-bodied person couldn’t. We can all learn from this resolve to survive. Professional patients do not get paid, but their work is still work, with no time off. Believe me, if there were paid positions for disabled people doing a kicka$$ job of surviving and taking care of themselves, they would have already applied en masse. For people who struggle every day to get out of bed (or not), manage their health, share an educational post online, and keep a roof over their heads; their most important job is life or death, not paycheck vs poverty.  However, many patients in these situations are fighting both for their life and struggling financially. They exist in a life or death and “paycheck” vs. poverty continuum (now’s a good time to share that people living with a disability are twice as likely to live in poverty than people not living with a disability). If disability benefits could be seen as a paycheck for people who do not fit the current definition of work, whose unchosen work is vitally important to future generations, where could that lead us? If we recognized, through faster and more generous disability approvals, that disabled bodies and minds are also capable bodies and minds that do unattractive essential work that helps glue society together (i.e. we need both garbage workers and presidents), where could that lead us? If the goals are to reduce stigma, deaths (including by suicide), and improve the quality of life for people with disabilities as well the lives of their caretakers, doctors, communities, and the world, where could living wages for disabled people lead us? This is not a request to recognize lesser-than achievements or abilities in an inspirational way. It’s a shift in thinking towards recognizing that people can do amazing things whether they are fighting a degenerative chronic disease, making $100k per year, or both.  It’s a shift to recognizing that working for pay vs. fighting to survive should not be seen as greater vs. worse, lucky vs. unlucky, happy vs. sad – it shouldn’t be “vs.” anything! If someone works 10 times harder than another just to brush their teeth, work five or 10 hours per week (or make it through all their doctor appointments), manage their health, or go to bed, these must be recognized not as inspiration porn but as equally valid successes. It shouldn’t matter that some are working hard to fight an incurable disease 24/7 while others may be leading a company with perfect health – they’re both using the same kind of cells in their body and brain to be successful within their realm of ability. We all have limits; we just need to stop defining those limitations based solely on the experience of able-bodied people. If we continue to define success using able-bodied norms (and the size of people’s bank accounts), we support assumptions that “significant physical or mental hurdles” and “amazing contributions to society” can’t exist in the same sentence. We, the disabled, don’t want pity. We don’t want to be inspiring. We want to be seen and recognized equally. We want to be acknowledged financially for the contributions we make to society that are equally as valid as able-bodied people. Because many of us are working harder than a majority of the population to achieve anything at all. Oh, and the disability benefits? They’re not icing on the cake. They’re essential to our survival. *I speak only from my own experience. My story and my words do not represent all people living with disabilities. Our lives and our stories are as varied as the cells in our bodies.* Follow this journey on Being Charis. We want to hear your story. Become a Mighty contributor here. Thinkstock photo by MagMos.

Charis Hill

14 Ways to Become an Advocate for Your Medical Condition

There is not a one-size-fits-all way to become a chronic disease advocate or activist. Everyone’s journey will be shaped by personal experiences, interests, time and ability. I’ve gathered these tips from my own journey, but by no means is this an exhaustive list and I don’t recommend attempting them all at once. Also, while directed at people who have chronic diseases, these tips can apply to partners, caregivers, friends and family who want to become allied advocates. As long as the end goal is to raise awareness publicly for the sake of social or political change, there is no inherently wrong way to create an advocacy platform. 1. Get comfortable telling your own story. Come out as sick. Introduce your disease to friends, family, and peers in a manner that also outlines your clear desire for them to listen – you may even need to say, “This is my story and unless you have lived it, I expect you to really hear me.” No one can tell your story for you and owning your experience can be empowering. Also consider that there are hundreds, thousands, or millions more people experiencing the same things you are. 2. Advocate for your own care first. You won’t be able to advocate on behalf of others until you know how to effectively advocate for – and take care of – yourself. Initiate a collaborative relationship with your doctors and specialists. Take equal (or more) responsibility in your care. Communicate. Understand your rights as a patient. Don’t be afraid to divorce your doctor if needed. Appeal insurance denials. Communicate with your pharmacist(s); they generally know a lot. 3. Do your research. Learn all you can about your disease, including how it originates (if known), who gets it, how many people have it, how it is diagnosed, what treatments are offered or suggested, what current research says. Become an expert and stay up to date, because new data is always being published. 4. Educate. Commit to making sure you are a credible source of information by fact-checking multiple sources before you share news or articles. There is a difference between facts and unsupported long-standing beliefs. Be prepared and willing to engage patiently with people who will respond in different ways, ranging from curiosity to disbelief, to anger to joy. Seek to educate, not alienate. 5. Turn hobbies into platforms for advocacy and awareness. Think about an activity you are passionate about. Turn that activity into a platform to share your story. For example: I use modeling and writing; I’ve built my blog around these aspects of myself. Modeling is my escape from the daily drudgery of managing my disease; I often share that reality and my story with designers, artists, photographers, and producers. I use images from my portfolio as “click bait,” to draw people in to reading what on earth a beautiful model could say about being so sick. Perhaps you like bicycles. Can you can create dialogue around their usability for people in pain? Are you a student? Can you involve research about your disease in a project or presentation? Do you like video games? Can you share within your community how gaming helps you escape for a little while? You may be surprised at how people open up to share their own stories once someone brave opens the door. 6. Set clear boundaries. Take time to recharge. Don’t be afraid to say no when you’re stretched too thin. Limit the amount of time and energy you allot for this work – it can be draining. Remember – your body is fighting hard; that’s why you’re an advocate! Refer back to #2 as often as needed. 7. Get involved. Forge relationships with nonprofit organizations that do work related to your disease. Volunteer. Some organizations even have paid advocacy positions. Sign up for action-alerts or join committees to help plan events or outreach. Ask if your story could be highlighted in some way to raise awareness. Begin conversations within your own disease community and the larger chronic disease community about raising awareness – you can do this online and in person. The opportunities are endless. 8. Show up. Attend healthcare conferences and seminars. Ask questions, share your experiences, and network with the people and organizations there. Many times the patient voice is not heard at these professional meetings that discuss healthcare, yet we are the biggest stakeholder! There are often scholarships available as needed if you email or call and ask organizers ahead of time. 9. Write. Write letters to the editor in response to stories (or a lack there-of) about chronic disease. Submit op-eds about local policies that affect you. Write your representatives about policies that would help people with your disease (many nonprofit organizations provide fact sheets and templates to guide you). Write television, radio, and other news media stations encouraging them to cover stories about chronic illness, or to cover current events that affect you. 10. Call. Call your representatives when there is a nationwide or statewide bill, policy, or order (USA) that affects you. Again, many organizations provide fact sheets and templates to guide you. Find your reps here. 11. Participate in research. Be a guinea pig for a clinical trial or share your experiences in a survey or focus group. You might even get paid. Research can help build better treatments, awareness campaigns, support programs, and even cures. Many researchers are also shifting to including patients in all aspects of research, including as part of the research team from start to finish. 12. Start something new. Start a support group. Begin a blog. Build an organization. These are especially geared for those with an entrepreneurial spirit. Refer back to #2 and #6  if you consider exploring these big responsibilities! If you’re not able to take on a whole blog or support group, you can still submit guest posts for already-existing blogs or offer to co-facilitate an existing support group. 13. Diversify the advocate pool. Recognize openly and often that your experience does not speak for everyone who has your condition. When you have opportunities to help other voices be heard, look for those that don’t mirror your own. It will help you and your cause grow faster and more effectively. For starters, you can share this post widely. 14. Don’t give up. Just don’t. Did I miss something? Comment below! We want to hear your story. Become a Mighty contributor here . Thinkstock photo by Choreograph

Charis Hill

14 Ways to Become an Advocate for Your Medical Condition

There is not a one-size-fits-all way to become a chronic disease advocate or activist. Everyone’s journey will be shaped by personal experiences, interests, time and ability. I’ve gathered these tips from my own journey, but by no means is this an exhaustive list and I don’t recommend attempting them all at once. Also, while directed at people who have chronic diseases, these tips can apply to partners, caregivers, friends and family who want to become allied advocates. As long as the end goal is to raise awareness publicly for the sake of social or political change, there is no inherently wrong way to create an advocacy platform. 1. Get comfortable telling your own story. Come out as sick. Introduce your disease to friends, family, and peers in a manner that also outlines your clear desire for them to listen – you may even need to say, “This is my story and unless you have lived it, I expect you to really hear me.” No one can tell your story for you and owning your experience can be empowering. Also consider that there are hundreds, thousands, or millions more people experiencing the same things you are. 2. Advocate for your own care first. You won’t be able to advocate on behalf of others until you know how to effectively advocate for – and take care of – yourself. Initiate a collaborative relationship with your doctors and specialists. Take equal (or more) responsibility in your care. Communicate. Understand your rights as a patient. Don’t be afraid to divorce your doctor if needed. Appeal insurance denials. Communicate with your pharmacist(s); they generally know a lot. 3. Do your research. Learn all you can about your disease, including how it originates (if known), who gets it, how many people have it, how it is diagnosed, what treatments are offered or suggested, what current research says. Become an expert and stay up to date, because new data is always being published. 4. Educate. Commit to making sure you are a credible source of information by fact-checking multiple sources before you share news or articles. There is a difference between facts and unsupported long-standing beliefs. Be prepared and willing to engage patiently with people who will respond in different ways, ranging from curiosity to disbelief, to anger to joy. Seek to educate, not alienate. 5. Turn hobbies into platforms for advocacy and awareness. Think about an activity you are passionate about. Turn that activity into a platform to share your story. For example: I use modeling and writing; I’ve built my blog around these aspects of myself. Modeling is my escape from the daily drudgery of managing my disease; I often share that reality and my story with designers, artists, photographers, and producers. I use images from my portfolio as “click bait,” to draw people in to reading what on earth a beautiful model could say about being so sick. Perhaps you like bicycles. Can you can create dialogue around their usability for people in pain? Are you a student? Can you involve research about your disease in a project or presentation? Do you like video games? Can you share within your community how gaming helps you escape for a little while? You may be surprised at how people open up to share their own stories once someone brave opens the door. 6. Set clear boundaries. Take time to recharge. Don’t be afraid to say no when you’re stretched too thin. Limit the amount of time and energy you allot for this work – it can be draining. Remember – your body is fighting hard; that’s why you’re an advocate! Refer back to #2 as often as needed. 7. Get involved. Forge relationships with nonprofit organizations that do work related to your disease. Volunteer. Some organizations even have paid advocacy positions. Sign up for action-alerts or join committees to help plan events or outreach. Ask if your story could be highlighted in some way to raise awareness. Begin conversations within your own disease community and the larger chronic disease community about raising awareness – you can do this online and in person. The opportunities are endless. 8. Show up. Attend healthcare conferences and seminars. Ask questions, share your experiences, and network with the people and organizations there. Many times the patient voice is not heard at these professional meetings that discuss healthcare, yet we are the biggest stakeholder! There are often scholarships available as needed if you email or call and ask organizers ahead of time. 9. Write. Write letters to the editor in response to stories (or a lack there-of) about chronic disease. Submit op-eds about local policies that affect you. Write your representatives about policies that would help people with your disease (many nonprofit organizations provide fact sheets and templates to guide you). Write television, radio, and other news media stations encouraging them to cover stories about chronic illness, or to cover current events that affect you. 10. Call. Call your representatives when there is a nationwide or statewide bill, policy, or order (USA) that affects you. Again, many organizations provide fact sheets and templates to guide you. Find your reps here. 11. Participate in research. Be a guinea pig for a clinical trial or share your experiences in a survey or focus group. You might even get paid. Research can help build better treatments, awareness campaigns, support programs, and even cures. Many researchers are also shifting to including patients in all aspects of research, including as part of the research team from start to finish. 12. Start something new. Start a support group. Begin a blog. Build an organization. These are especially geared for those with an entrepreneurial spirit. Refer back to #2 and #6  if you consider exploring these big responsibilities! If you’re not able to take on a whole blog or support group, you can still submit guest posts for already-existing blogs or offer to co-facilitate an existing support group. 13. Diversify the advocate pool. Recognize openly and often that your experience does not speak for everyone who has your condition. When you have opportunities to help other voices be heard, look for those that don’t mirror your own. It will help you and your cause grow faster and more effectively. For starters, you can share this post widely. 14. Don’t give up. Just don’t. Did I miss something? Comment below! We want to hear your story. Become a Mighty contributor here . Thinkstock photo by Choreograph