Amanda Wroten

@amanda-wroten | contributor
Amanda Wroten is a nonprofit management professional and college professor.  She is an active equestrian, monoskier, and participates in CrossFit and Mountaineering. She has Ehlers Danlos Syndrome, Lupus, Postural Orthostatic Tachycardia Syndrome and spinal cord/nerve damage in her left leg resulting in a failing quad and glute. In 2019 she developed and launched the first Disability Studies course at Old Dominion University.
Amanda Wroten

Don't Give Unsolicited Advice to People With Health Conditions

On Wednesday, my social media messenger played a happy sound announcing a private message from a high school friend I had not seen in years.  I had recently posted a picture of myself, in a massage chair, trying to work my way through an incredible pain flare while I was unable to get to my physician in another state. Initially, I was comforted and felt loved by her message. Those feelings quickly turned to anger when I noticed she asked if I had tried a juice cocktail, which she sold, to cure my chronic pain etc. The messages continued to come in, paragraphs of unsolicited miracles until I could stand it no more. I asked someone for advice, which I took, and snapped a photo of my rose gold-colored magnesium wheelchair, asking, “will it fix this?”  I hope she got the message. Social media is designed for us to share all of our latest endeavors. From cliche salad photos on Instagram to the latest Whole 30 diet that has changed your life, many of us want to tell the world about everything we do that makes us better humans. Some of these items and activities are things we participate in for fun and others are part of our business structure. Oils, shakes and leggings; your social media feed has them all. That is why it should be no surprise that the increasing prevalence of social media influence, coupled with the extended amount of time we spend online, makes it a perfect storm for well-meaning friends to bombard you with the latest and greatest thing that cured their aunt’s sister’s cousin’s babysitter. If you are like me and have a chronic illness, you have likely been offered unsolicited advice in real life from friends and family that love you and want nothing but the best for you. As the unattributed joke goes: “If you say chronic illness into the mirror three times, someone will appear and tell you to do yoga.” Some of the products, services, diets and activities presented can be excellent options for the right person and situation. As a CrossFit coach, I am often quick to share that many disabled individuals can do CrossFit effectively and efficiently in a safe environment. While I usually only share that information if asked, many friends are so excited to share their ideas that they forget the language and insistence they use devalues the chronically ill and disabled experience on many different levels, attributing serious and life-limiting issues to a simple lack of juice, herbs or lifestyle changes. While this article will probably mostly be read by individuals who have been on the receiving end of unsolicited advice, I strongly encourage you to share it with your able-bodied and neurotypical networks. All too often we sit silently as our friends tell us about the latest in essential oils that will cure a genetic disorder they can’t even pronounce. While we may endure this for the sake of friendships, I believe we, as lifelong inhabitants of this chronically ill space, owe it to our visitors to help them culturally navigate our world. I have a genetic disorder known as Ehlers-Danlos syndrome, as well as an acquired incomplete spinal cord/nerve injury at L4 and L5 due to a fall. No amount of juice or essential oils will change the defect in my DNA. Ingesting the latest collagen you saw at the local grocery store will not either. And yoga most certainly will not fix a disorder that causes extreme flexibility and dislocations due to lack of structure in our tendons and ligaments. If anything, such a suggestion could dislocate my joints, requiring a hospital visit and causing permanent damage to the associated nerves and blood vessels. So to you, friends, family, coworkers and the random woman at the drug store I am trying to avoid by putting in my headphones without any music, if you want to help us: don’t. Don’t offer unsolicited advice to us without first inquiring. That is not to say you cannot appropriately share the things you are doing in your life and your excitement for their success. We want you to live your best life. But there is a solid wall between sharing what is working for you and insulting me by suggesting you hold the miracle cure world-renowned physicians have failed to find. Disability and chronic illness bring a unique culture many of us as members of those groups come to embrace, for better or worse. Given the different stages and outcomes we face, some of us have mourned the loss of our former selves and come to a place of acceptance and peace. Suggesting that we do not do enough yoga, exercise or eat enough vegetables is insulting and devalues the part of our lives we are unable to change due to disease progression, accident or genetics. Such behavior also indicates that you have not truly put our friendship first and don’t truly understand what we go through on a daily basis. If you did, you would clearly see the multitude of new medications, treatments, therapies and other things we post about at 2:00 a.m. when we are unable to sleep due to mounting pain or worry. This concept can be difficult to understand at first. How is caring and sharing wrong? What does it mean to “give up” searching for an answer? These are hard questions with answers that are unique to each individual.  But ultimately, it comes down to respect for the individual with the health condition, as well as a firm understanding of what their condition entails. Not all problems are fixable. ALS is not something we can solve. No amount of oil will repair brain lesions. Some people do not want a cure for their disabilities and are happy as they are. Seek to understand health conditions and their scientific limitations before thrusting that information upon someone else. Channel the frustration you felt when someone told you how to parent, or how to do something when you were really doing the best you could. My spoonies, be strong and cease being silent. Be a voice and an advocate for the community who supports you, understands you and knows yoga can be beneficial, but for other reasons.

Amanda Wroten

Don't Give Unsolicited Advice to People With Health Conditions

On Wednesday, my social media messenger played a happy sound announcing a private message from a high school friend I had not seen in years.  I had recently posted a picture of myself, in a massage chair, trying to work my way through an incredible pain flare while I was unable to get to my physician in another state. Initially, I was comforted and felt loved by her message. Those feelings quickly turned to anger when I noticed she asked if I had tried a juice cocktail, which she sold, to cure my chronic pain etc. The messages continued to come in, paragraphs of unsolicited miracles until I could stand it no more. I asked someone for advice, which I took, and snapped a photo of my rose gold-colored magnesium wheelchair, asking, “will it fix this?”  I hope she got the message. Social media is designed for us to share all of our latest endeavors. From cliche salad photos on Instagram to the latest Whole 30 diet that has changed your life, many of us want to tell the world about everything we do that makes us better humans. Some of these items and activities are things we participate in for fun and others are part of our business structure. Oils, shakes and leggings; your social media feed has them all. That is why it should be no surprise that the increasing prevalence of social media influence, coupled with the extended amount of time we spend online, makes it a perfect storm for well-meaning friends to bombard you with the latest and greatest thing that cured their aunt’s sister’s cousin’s babysitter. If you are like me and have a chronic illness, you have likely been offered unsolicited advice in real life from friends and family that love you and want nothing but the best for you. As the unattributed joke goes: “If you say chronic illness into the mirror three times, someone will appear and tell you to do yoga.” Some of the products, services, diets and activities presented can be excellent options for the right person and situation. As a CrossFit coach, I am often quick to share that many disabled individuals can do CrossFit effectively and efficiently in a safe environment. While I usually only share that information if asked, many friends are so excited to share their ideas that they forget the language and insistence they use devalues the chronically ill and disabled experience on many different levels, attributing serious and life-limiting issues to a simple lack of juice, herbs or lifestyle changes. While this article will probably mostly be read by individuals who have been on the receiving end of unsolicited advice, I strongly encourage you to share it with your able-bodied and neurotypical networks. All too often we sit silently as our friends tell us about the latest in essential oils that will cure a genetic disorder they can’t even pronounce. While we may endure this for the sake of friendships, I believe we, as lifelong inhabitants of this chronically ill space, owe it to our visitors to help them culturally navigate our world. I have a genetic disorder known as Ehlers-Danlos syndrome, as well as an acquired incomplete spinal cord/nerve injury at L4 and L5 due to a fall. No amount of juice or essential oils will change the defect in my DNA. Ingesting the latest collagen you saw at the local grocery store will not either. And yoga most certainly will not fix a disorder that causes extreme flexibility and dislocations due to lack of structure in our tendons and ligaments. If anything, such a suggestion could dislocate my joints, requiring a hospital visit and causing permanent damage to the associated nerves and blood vessels. So to you, friends, family, coworkers and the random woman at the drug store I am trying to avoid by putting in my headphones without any music, if you want to help us: don’t. Don’t offer unsolicited advice to us without first inquiring. That is not to say you cannot appropriately share the things you are doing in your life and your excitement for their success. We want you to live your best life. But there is a solid wall between sharing what is working for you and insulting me by suggesting you hold the miracle cure world-renowned physicians have failed to find. Disability and chronic illness bring a unique culture many of us as members of those groups come to embrace, for better or worse. Given the different stages and outcomes we face, some of us have mourned the loss of our former selves and come to a place of acceptance and peace. Suggesting that we do not do enough yoga, exercise or eat enough vegetables is insulting and devalues the part of our lives we are unable to change due to disease progression, accident or genetics. Such behavior also indicates that you have not truly put our friendship first and don’t truly understand what we go through on a daily basis. If you did, you would clearly see the multitude of new medications, treatments, therapies and other things we post about at 2:00 a.m. when we are unable to sleep due to mounting pain or worry. This concept can be difficult to understand at first. How is caring and sharing wrong? What does it mean to “give up” searching for an answer? These are hard questions with answers that are unique to each individual.  But ultimately, it comes down to respect for the individual with the health condition, as well as a firm understanding of what their condition entails. Not all problems are fixable. ALS is not something we can solve. No amount of oil will repair brain lesions. Some people do not want a cure for their disabilities and are happy as they are. Seek to understand health conditions and their scientific limitations before thrusting that information upon someone else. Channel the frustration you felt when someone told you how to parent, or how to do something when you were really doing the best you could. My spoonies, be strong and cease being silent. Be a voice and an advocate for the community who supports you, understands you and knows yoga can be beneficial, but for other reasons.

Amanda Wroten

Don't Give Unsolicited Advice to People With Health Conditions

On Wednesday, my social media messenger played a happy sound announcing a private message from a high school friend I had not seen in years.  I had recently posted a picture of myself, in a massage chair, trying to work my way through an incredible pain flare while I was unable to get to my physician in another state. Initially, I was comforted and felt loved by her message. Those feelings quickly turned to anger when I noticed she asked if I had tried a juice cocktail, which she sold, to cure my chronic pain etc. The messages continued to come in, paragraphs of unsolicited miracles until I could stand it no more. I asked someone for advice, which I took, and snapped a photo of my rose gold-colored magnesium wheelchair, asking, “will it fix this?”  I hope she got the message. Social media is designed for us to share all of our latest endeavors. From cliche salad photos on Instagram to the latest Whole 30 diet that has changed your life, many of us want to tell the world about everything we do that makes us better humans. Some of these items and activities are things we participate in for fun and others are part of our business structure. Oils, shakes and leggings; your social media feed has them all. That is why it should be no surprise that the increasing prevalence of social media influence, coupled with the extended amount of time we spend online, makes it a perfect storm for well-meaning friends to bombard you with the latest and greatest thing that cured their aunt’s sister’s cousin’s babysitter. If you are like me and have a chronic illness, you have likely been offered unsolicited advice in real life from friends and family that love you and want nothing but the best for you. As the unattributed joke goes: “If you say chronic illness into the mirror three times, someone will appear and tell you to do yoga.” Some of the products, services, diets and activities presented can be excellent options for the right person and situation. As a CrossFit coach, I am often quick to share that many disabled individuals can do CrossFit effectively and efficiently in a safe environment. While I usually only share that information if asked, many friends are so excited to share their ideas that they forget the language and insistence they use devalues the chronically ill and disabled experience on many different levels, attributing serious and life-limiting issues to a simple lack of juice, herbs or lifestyle changes. While this article will probably mostly be read by individuals who have been on the receiving end of unsolicited advice, I strongly encourage you to share it with your able-bodied and neurotypical networks. All too often we sit silently as our friends tell us about the latest in essential oils that will cure a genetic disorder they can’t even pronounce. While we may endure this for the sake of friendships, I believe we, as lifelong inhabitants of this chronically ill space, owe it to our visitors to help them culturally navigate our world. I have a genetic disorder known as Ehlers-Danlos syndrome, as well as an acquired incomplete spinal cord/nerve injury at L4 and L5 due to a fall. No amount of juice or essential oils will change the defect in my DNA. Ingesting the latest collagen you saw at the local grocery store will not either. And yoga most certainly will not fix a disorder that causes extreme flexibility and dislocations due to lack of structure in our tendons and ligaments. If anything, such a suggestion could dislocate my joints, requiring a hospital visit and causing permanent damage to the associated nerves and blood vessels. So to you, friends, family, coworkers and the random woman at the drug store I am trying to avoid by putting in my headphones without any music, if you want to help us: don’t. Don’t offer unsolicited advice to us without first inquiring. That is not to say you cannot appropriately share the things you are doing in your life and your excitement for their success. We want you to live your best life. But there is a solid wall between sharing what is working for you and insulting me by suggesting you hold the miracle cure world-renowned physicians have failed to find. Disability and chronic illness bring a unique culture many of us as members of those groups come to embrace, for better or worse. Given the different stages and outcomes we face, some of us have mourned the loss of our former selves and come to a place of acceptance and peace. Suggesting that we do not do enough yoga, exercise or eat enough vegetables is insulting and devalues the part of our lives we are unable to change due to disease progression, accident or genetics. Such behavior also indicates that you have not truly put our friendship first and don’t truly understand what we go through on a daily basis. If you did, you would clearly see the multitude of new medications, treatments, therapies and other things we post about at 2:00 a.m. when we are unable to sleep due to mounting pain or worry. This concept can be difficult to understand at first. How is caring and sharing wrong? What does it mean to “give up” searching for an answer? These are hard questions with answers that are unique to each individual.  But ultimately, it comes down to respect for the individual with the health condition, as well as a firm understanding of what their condition entails. Not all problems are fixable. ALS is not something we can solve. No amount of oil will repair brain lesions. Some people do not want a cure for their disabilities and are happy as they are. Seek to understand health conditions and their scientific limitations before thrusting that information upon someone else. Channel the frustration you felt when someone told you how to parent, or how to do something when you were really doing the best you could. My spoonies, be strong and cease being silent. Be a voice and an advocate for the community who supports you, understands you and knows yoga can be beneficial, but for other reasons.

Amanda Wroten

Abled Privilege and Disability Monitoring on Social Media

If you’re upset by the Trump administration’s proposed policy on reducing disability income fraud by monitoring and flagging an individual’s social media activity, you aren’t alone. The policy presents a cookie cutter image many Americans have of disability, and their expectation of disabled individuals to perform disability in a manner that is consistent with able-bodied perceptions. Over the last two years we have seen an uptick in activity on #privilege hashtags.  These metadata tags note people discussing privilege, yet often failing to see how it applies or exists. Trump’s proposed policy perfectly defines privilege. Assuming you do not have a disability, and excluding any other factors that might impact your access to social media (such as internet speed, equipment etc.), you are able to wake up, post your gym selfies and enjoy your life. Social media monitoring would deprive disabled people of the ability to safely engage in this common activity. Disabled individuals do not elect to be disabled. This is not a choice. Disabled individuals need disability benefits for a variety of reasons, including discrimination against their unique needs and bodies, lack of accessibility and their healthcare needs and function. The choice is not theirs, and if you think it is, you’re one car accident away from finding out. I’ll bring to light the case of Paul Longmore, a history professor and polio survivor. Longmore received his Ph.D. by self-paying, one course at a time, because he was not allowed to receive a funded Ph.D. slot (the traditional route) or royalties from his writing. You may be asking, why didn’t Longmore just get a job and get off disability benefits? Longmore did not require the income of disability support — he needed medical assistance. Longmore’s status as a disability income recipient provided the $20,000 a year ventilator that allowed him to breathe and live, as well as a funding for a personal care attendant to physically transfer him from bed to chair and attend to “activities of daily living,” the most basic privilege you probably take for granted — like using the bathroom alone or being able to get out of bed. Personal care attendant services are only available through Medicaid, and not covered by private insurance, so Longmore had to limit his income to keep his care. When Longmore finally published his first book as a Ph.D. student, he was unable to receive any royalties (which he wanted to use for tuition) because of income limits. Thus, he held a party and threw the book into the bonfire, then writing the famous essay “Why I Burned My Book.” But you’re probably saying, “Amanda, Trump is not talking about learning, he’s talking about going to the gym and being physically active.” Yes, he is. Individuals with disabilities are not necessarily incapable of physical activity; in fact, many require exercise to be healthy just like able-bodied people. For example, individuals with Down Syndrome are up to 70 percent more likely to be obese, due to the overproduction of the hormone leptin. Coupled with lack of exercise, this can result in diminished quality of life as well as early mortality rates. There have recently been numerous successful programs and studies which have reduced obesity and mortality in the Down syndrome community through physical exercise. These programs have also increased social interaction and helped individuals living with Down syndrome gain increased social skills. If you have the good fortune of knowing or loving someone with Down syndrome, then you know they may or may not be able to hold a full-time job or produce an income that allows them to live an independent life above the poverty line. Thus in this case, and many others, the disabled individual is three-dimensional. They are unable to maintain gainful employment or need assistance with the activities of daily living, but still can benefit and even improve their circumstances by exercise, all of which would put them at risk of losing their disability benefits under this proposal. How is this privilege? Marginalized bodies and individuals know the world is watching, and experience the “two-ness” of having an identity the dominant culture does not understand. As W.E.B. DuBois stated, “It is a peculiar sensation, this double-consciousness, this sense of always looking at one’s self through the eyes of others, of measuring one’s soul by the tape of a world that looks on in amused contempt and pity.” People with disabilities experience the world in a way that is different from the privilege of being able-bodied, the privilege of doing self-care, self-expression, and doing something as simple as exercising. As Frantz Fanon stated of his experience as a black Parisian in the 1950s, he felt the native white Parisians’ eyes “placing a burdensome weight upon me, one that left me uncomfortable in my own skin.” To paraphrase, the burden of the constant looks and double consciousness made him feel constantly excluded from society. Other scholars describe the above sentiments as feeling like they are behind a screen being viewed, which in this case is particularly appropriate since we are discussing social media monitoring of marginalized bodies. Disability isn’t what many non-disabled people think it is, including and especially those in government who want to conduct surveillance of disabled people. Disability can vary from day to day, person to person, and task to task. It is dynamic and fluid, whereas discrimination and ableism provide a static dependability to consistently find new and creative ways to own marginalized bodies.

Amanda Wroten

Letter to CVS About Opioid Policy From Woman With Chronic Pain, EDS

Dear CVS, Can we talk? Have you ever had one of those friends who was about to make a career-ending decision and you just felt you had to say something? I’m that friend. No, not the one in trouble. The other one. Sit down, because I’m about to do you a favor. I awoke this morning to read what I can only assume you believe to be the “positive” headline that CVS stores will limit access to opioids. What have you done? I get it. Someone sat in one of your risk management meetings discussing your potential liability in a lawsuit from an overdose and suggested this step as a way to: 1. Fix a social epidemic 2. Reduce liability 3. “Help” consumers The problem is, what you are doing is just the opposite. If anything, you may now find desperate patients resorting to illegal means to manage their pain, or worse yet, suicide – a possible outcome for some who cannot get the proper help to deal with physical pain. While this is a free market economy, and you are well within your right to manage your business as you see fit, you are hurting patients who have trusted you to be an ally in their health management. I suspect that you, like many, do not truly understand the world of chronic pain. Let me take you on a journey. And please keep in mind that I am one of 100 million Americans with this problem. I was born with Ehlers-Danlos syndrome, a genetic defect that means the glue that holds my body together is defective. The disease replicates itself in many ways, from organ ruptures to the hallmark dislocated joints, but almost all patients share chronic, intractable pain. In 2011, I developed issues with my spinal cord related to the disease. I have been treated with opioids since the age of 15 because my condition does not improve. As a matter of fact, for some individuals with EDS, the condition can be terminal. In addition to being treated for my pain, I’m also a productive member of society. I have a master’s degree, a CEO level job and I’m a college professor at two universities. I pay my taxes, have no criminal record and I am a health nut. I also have days I cannot function due to pain. Days where I have to use my wheelchair to have an outing with my friends. Days where I lay in my car and cry on my lunch break so I can get through the work day. And this is with a pain management protocol. Imagine my world post-CVS – where I cannot get my prescription filled. As an average patient on a pain management protocol, I am subjected to plenty of scrutiny and checks – and frankly I don’t need it coming from you too. I, like most patients, sign a contract with my physician that I will do many things, including: not getting pain medication from another physician, even in an emergency, coming to the office within 24 hours if requested to drug test, proving to the office I was out of town if I cannot get there in 24 hours and randomly drug testing on a regular basis to show the only substances in my system are those prescribed to me – and that those substances are indeed there (proving I’m not selling my medication). On top of that, I see the look on your pharmacists’ faces when I pick up my prescription – I know what you’re thinking. I battle my insurance company constantly to cover the high costs of my medication – including providing charts and graphs from a pain tracking system I use. In short – I’m vetted. My physician has confirmed my diagnosis with a geneticist, tried other methods, monitors me closely and has determined that the slip of paper he gave me is the best treatment for my needs. So why do you now want to get a say in this too? The actual word used in the first sentence of the most recent Forbes article on this policy change is scrutiny . “Pharmacy giant CVS Health will ratchet up scrutiny of opioid prescriptions in an effort to reduce misuse and abuse of the overprescribed painkillers.” Do you not think from the above that we as patients do not receive enough scrutiny ? Do you not think we have jumped through enough hoops and been looked down upon prior to visiting your establishment? “CVS said its program will include ‘limiting to seven days the supply of opioids dispensed for certain acute prescriptions for patients who are new to therapy; limiting the daily dosage of opioids dispensed based on the strength of the opioid; and requiring the use of immediate-release formulations of opioids before extended-release opioids are dispensed.’” If you’d like my chart from my physician’s office you’ll find 20 years of trails of “immediate-release formulations” that did not work. I’m sure your pharmacy staff can also tell you that immediate-release formulations are great for breakthrough pain but do not manage long-term pain. You’ll also find about 30 pages of data I take the initiative to collect, just to get my prior authorization from my insurance. As a customer, it’s appalling to me that you now want in on the bullying of chronic pain patients. Your Chief Medical Officer, Dr. Troyen Brennan, wrote that “in many ways, the abuse of opiates can be seen as the leading public health emergency the United States faces today.” That is not true. I believe the leading health problem we face today is the ineffective care and treatment of those with chronic pain conditions. Until we solve the mystery of pain, or treat patients appropriately, we will always have those individuals who are so desperate they will find illegal means to help themselves. I am not for a second discrediting that there are individuals who are trying to obtain prescriptions for recreational use under false pretenses. However, I think that determination lies with the doctor, most of whom utilize the above referenced pain management protocol. It also should not impact my treatment because some individuals are abusing the system. What you are doing is effectively finding people illegally parking in the disability spaces and saying, “We’re limiting the number of disability spaces so people don’t abuse them.”  You can quickly see where this is illogical. You would never do that. People need those spaces. So why then are you doing this with legally prescribed medications? As you think about the dozens of statistics you’ve seen on the opioid crisis in America, let me leave you with these statistics: 100 million Americans experience chronic pain. Chronic pain is the number one cause of long-term disability in the United States. And most sobering of all: Psychology Today estimates that as many as 20,000 or more Americans with chronic pain die by suicide each year – well more than the government’s tally of 16,235 deaths from prescription opioids each year. “The dismal situation with chronic pain — and the potential link with suicide — is unlikely to improve until the federal government takes the pain epidemic seriously. While the government spends $2,562 on research for every person with HIV/AIDS, it spends only $4 for every person with pain.” (Psychology Today) You are in a unique position CVS. You can be part of the problem or part of the solution. But you can’t be in the business of part-time helper and part-time vigilante. Fulfill your company’s mission: “to improve the lives of those we serve by making innovative and high-quality health and pharmacy services safe, affordable and easy to access. ” Access. You wrote it. It is in your mission statement. Fulfill you mission. Primum non nocere. I await your response, Amanda WrotenPatient. Wife. Human. Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community. We want to hear your story. Become a Mighty contributor here. Photo courtesy of CVS Pharmacy Facebook page

CVS to Start Limiting Opioid Prescriptions to 7-Day Supply

On Thursday, CVS Pharmacy announced it will begin limiting opioid prescriptions to a seven-day supply for certain conditions, starting February 2018. CVS did not elaborate as to which conditions would be limited by the policy beyond “acute prescriptions.” According to CVS, the retailer will follow the guidelines set by the Centers for Disease Control and Prevention when dispensing opioids. This includes limiting the duration and dose of opioid prescriptions and prioritizing immediate-release formulations before extended-release medications. It is the first major pharmacy chain to place a restriction on how many pills a doctor can prescribe. “Without a doubt, addressing our nation’s opioid crisis calls for a multipronged effort involving many health care stakeholders, from doctors, dentists and pharmaceutical companies to pharmacies and government officials,” Larry Merlo, president and CEO of CVS Health, said in a statement detailing CVS’ new policies. CVS will also require pharmacists talk to customers about addiction as well as how to safely store and dispose of opioid medications. The major pharmaceutical retailer will also offer in-store opioid disposal units in 750 of its pharmacies. CVS dispenses medications for nearly 90 million customers, NBC News reported. It’s not clear if or how its policies will affect customers who use opioids to treat chronic pain. According to a review of studies, the majority of people prescribed opioids for chronic pain do not develop an addiction. While the opioid crisis is a serious issue nationwide that needs to be addressed, opioid restrictions and policies changes have people living with chronic conditions concerned they won’t be able to manage their pain. “People don’t seem to realize how many lives opioid medication saves,” Anne Turner, who lives with fibromyalgia, previously told The Mighty. “With chronic pain, there’s no escape from the agony and for many, opioids are the only way of achieving some kind of relief. Without them, I can’t work, I can’t look after my home, I can’t even look after myself. With them, I have as close to a normal life as I can hope for. This truth seems to be lost in the current opioid debate.”

Amanda Wroten

Ehlers-Danlos Syndrome: The Accessibility Issues at Theme Parks

A disclaimer: I reached out to Busch Gardens and not only asked for a response to my issues with their disability access program, I also offered to test out the park in a wheelchair. They didn’t respond. It is a right of passage. Anyone that lives within an hour of a major theme park knows that once you get to be a teenager with a season pass, your life is about to change. As a youth, I spent my summers at the local theme parks. Even as an adult, the close proximity and mixture of food and fun has made it a popular social outing. However, as my mobility has changed over the years, I am no longer able to visit the park without the use of my SideStix crutches or, the more frequent reality lately, a wheelchair. This is a huge adjustment for me and my friends but we are making the best of it and it is better than not going.   I have a genetic condition that makes my joints dislocate and causes widespread pain. Ehlers-Danlos syndrome, as it is known, also comes with some fun comorbidities such as postural orthostatic tachycardia syndrome, which makes it hard for me to stand for long periods of time without blacking out. Because my circle is awesome, my friends have adjusted well. Perhaps better than I have, because each visit we have to go through the same…total… bullshit. When you’re able-bodied, you can just walk into your local theme park and you don’t have to think about things. You don’t have to allow extra time, ask for help or have others wait on you. But not if you have a disability. Now, I do want to be clear. This blog post is not about those theme parks that are doing it right. Disney, for example, has one of the best ride accessibility programs I have ever seen. And that came for them at a heavy cost. Up until the last few years the Disney theme parks were plagued with guide services using disabled guides so rich families could get front-of-the-line access – all while piggybacking on someone’s disability and basically cutting the line.  They had to draw a hard line in the sand and find a creative solution to this issue while still protecting the program for those visitors who needed access. Their solution was twofold: Those guests who are ambulatory, even with the use of a walking aid, visit guest relations and request an accessibility passport. The representative talks to the patron about the need and how best to serve them. Those guests who utilize a wheelchair, scooter or stroller for medical needs do not have to register or visit anyone. They simply roll to the alternative entrance (usually the exit) and a cast member helps them on the ride. In addition to that, the Disney program is digital, so there is no paper to get, bracelet to wear or need to revisit the window every visit as the pass is good for the length of the stay or season. Enter my local theme park. Busch Gardens. A park I very much enjoy, where I spend a lot of money and where I think I should feel at home. Here, regardless of your disability, ambulatory or not, the patron must visit guest services every single time they come to the park. While this doesn’t seem like a big deal, this is also the line where folks renew or get passes, fix issues, make payments, etc. So, on a busy day, the line can be an hour. This is the first mistake Busch Gardens makes in their accessibility. They further segregate the disabled from the mainstream population by forcing them to wait in line every time they come to the park. Even if the last visit was yesterday. I’m rather fortunate my friends are patient, but could you imagine this on a date? And typically, because I don’t want to be “that guy,” I go to the park early and alone so I can make this transaction without my group being inconvenienced. Once at the window, I do have to say my experience getting the pass has been better than Disney in that it is quicker. Busch Gardens seems less concerned about the reason why you are requesting the pass – a good nod to them in that all disabilities aren’t visible. However, once you get the paper document, you also get a beautiful blue wristband with the disability logo. Now, I can see this being helpful for staff when interacting with those patrons who have a disability, but isn’t that what the paper is for? Why can’t patrons visit the ride and speak to the attendant in privacy? No adult or child needs to be “branded” disabled with this tacky and insensitive bracelet. It is pointless and serves no other function than to humiliate the patron. It is also completely void of sensitivity when dealing with those guests who may be on the autism spectrum and may not feel comfortable with a band around their wrist. While most of the time I have an invisible disability, if I use a wheelchair at the park, it is pretty hard to miss the 25-inch chrome rims strapped to my butt. The use of the pass inside the park is great, and my only minor criticism is that some rides are poorly designed, with the newest coaster, Invader, having no less than six to code ramps for a wheelchair user or someone with a mobility issue to navigate, only to get to the top and find out they have to come back in an hour.  It would make more sense to have someone at the ride height check station and alert the patron to the return time. In short, it is completely impossible to understand the world of disabled navigation and access unless you yourself utilize this access. Things that worked for me while ambulatory no longer work the same when seated. I would personally like to spend my free time working with the park management to redo their access program so it is more sensitive and truly accessible, so I hope I hear back from them. In the meantime, if you enjoyed my article I’d appreciate it if you would sign my petition to get Busch Gardens to change their accessibly policy. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via tucko019.

Amanda Wroten

Adapting CrossFit for People With Disabilities

The fittest on earth. The sport of exercise. Picking up heavy things, putting them down.  Burpees, box jumps and Olympic weightlifting moves. The world of CrossFit may seem like the last place you’d expect to find anyone with a disability. But in reality it is exactly where you should expect to find someone with a disability. As I’ve continued along my journey of being “differently abled” I’ve found one thing is true – people understand to the level of their perception. Those who love me, know me, or take the time to truly understand have learned that disability takes shape in many ways, it is not the same for everyone, and there are good days and bad days. Those who don’t invest the time in education on the topic may think disability is a cookie cutter diagnosis – one that remains static. As such, those individuals often expect people like me to “perform” disability – there is an expectation that each day will be the same, and that what they see from me matches their schema for what it is like to be disabled. Sometimes the same is true, but in a different way. I often find the people who know me the best don’t see me as having a disability, which in some ways is a fantastic thing. These friends and family see my unlimited potential, a few differences that make me unique, but never anything that is life-limiting or a disadvantage. However, like when someone says “I don’t see color,” there is an inherent problem with this. The dictionary defines a disability as “physical or mental condition that limits a person’s movements, senses, or activities.” By that definition, as individuals move in to their 40’s, most of us have something that doesn’t work well – so in turn we may all have a disability – a sensitive stomach, migraines, etc. I believe it is how we opt to let these things define us that changes a disability into either a disadvantage or a unique approach to the world. For the past five years I’ve participated in the extreme sport of CrossFit, finally finding a permanent home at a small box (as our gyms are called) with a set of unique coaches who do not shy away from differences. I remember walking into the box the first day and explaining my Ehlers-Danlos syndrome, its comorbidities, and the nerve damage and spinal cord issue it had opened me up to sustaining. Despite having no clue what any of that meant as an athlete, they welcomed me with open arms and told me we would figure it out – and boy did we. A few years later our box is home to several coaches with their adaptive endorsement, provided by Crossroads Adaptive Athletic Alliance, and multiple seated athletes. How is this possible in a sport known for extremely chiseled abs, highly tuned athletic ability, and endurance unlike any other? Because in my experience, CrossFit is the most adaptable sport on the planet. If you register for a local softball league, take karate, or join a kickboxing class, there is typically one standard of doing things. The sport of CrossFit recognizes the unique abilities and areas of weakness of each athlete and incorporates that concept into the core of its program. CrossFit inherently adapts itself as a sport for “normal” athletes, not at their peak fitness, those nursing a weekend warrior injury, or someone who just isn’t as strong in a particular area. This is known as scaling, or making an exercise/movement/workout appropriate to the athlete’s level and ability. An example of this might be a workout that has box jumps in it.  Not only are box jumps a highly ballistic movement, they are something the average human in their first exposure to CrossFit is unlikely to achieve. The “scale” or adaption on this for “normal” athletes is to step up on the box. This achieves the same outcome, replicates the movement, and exposes the athlete to the move until they progress. Ironically, this “scale” is the same for “normal” athletes as it is for someone with a disability such as myself. Depending on the day, my body, and how I am doing I either step up on the box independently or step up holding on to the rig (the equipment used for pull-ups and weightlifting) for stability if my left leg is dragging.  The adaption I had to make as a “disabled” or as we prefer “adaptive” athlete is essentially the same as a normal athlete who simply has not mastered the box jump maneuver. Can’t walk? No problem; for seated athletes or those lacking the full use of their lower body, the move becomes a transition from wheelchair or floor to box, utilizing the arms, and then back again. As you can see and imagine from the above, in a box with 15 athletes working out, each one may be doing several variations on the movement – but all athletes compete together against themselves – and no one ever feels different for the adjustments they need to make. In this sport, the athlete who doesn’t have box jumps mastered is no different, nor is their workout any different, than the athletes who will never be able to complete a box jump due to a permanent disability. I recently had the opportunity to participate in the CrossFit Open, an international competition amongst athletes where individuals complete standard workouts and are able to rank themselves against others. Crossroads Adaptive Athletic Alliance and WheelWod partnered to provide workout standards that were challenging but worked to adapt the released standards for each disability category. I encourage everyone who has some sort of disability, be it permanent, progressive, minor, or major, to look at the sport of CrossFit as a way of gaining strength, independence, confidence, and seeing themselves as the equal of others. In the famous words of Albert Einstein, “Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.” As I adapt everything in my life, I’d like to adapt that quote saying, “Everyone is an athlete, but if you judge a person on their ability to exercise in one one uniform movement, they will live their life seeing themselves as disabled, and thusly disadvantaged.” However, if you introduce a person to a sport where adapting and scaling is part of the norm, that person will come to see themselves as the athlete they are. We want to hear your story. Become a Mighty contributor here .

Amanda Wroten

Feeling Thankful With Ehlers-Danlos Syndrome

November is that time of the year when we all do two things: we either feel sincerely thankful for what we have in our lives, or we at least ride the social media wave of “thankful” posts. I’m not saying these things don’t come from an altruistic place. I truly believe that even if this is the only time of year you reflect on your gratitude, then you are better for it. However, I love an underdog, and as such, I am always motivated by the people who smile in the face of fear and are thankful for even the not-so-positive things in their life. A little over two years ago I was finally diagnosed with Ehlers-Danlos syndrome, and all the fun comorbidities that come with it (like its awesome friend POTS, or postural orthostatic tachycardia syndrome, and so forth). My situation was complicated by nerve damage to my left leg and spine that came in the form of a climbing accident on Mount Rainier in 2011. Since that time, I’ve dived head-first into the world of adaptive sports and having the most awesome life possible. Recently, due to a rough patch in life, I wasn’t my normal, positive self. But a strong friend encouraged me to always find the positive, and sure enough, as soon as I did, life got a whole lot better. That is why this I’m thankful this year for five things I have experienced – all thanks to EDS. 1. I’m grateful I was diagnosed with EDS late in life. I have participated in over 50 running events, including 13 half marathons and the 48.6 mile Dopey Challenge at Disney. 2. I’m grateful for my body slowly changing and having challenges. Because I was losing some mobility, I sought out the most aggressive functional workout possible – CrossFit – and recently took second place at the national Working Wounded Games, an all-adaptive CrossFit competition. 3. I’m grateful I am no longer able to ski upright. I shredded both my ACLs (without knowing it) in 2013 as a result of EDS, and after that I took to adaptive monoskiing.  I’m in my third year with the program and was Student of the Year my first time out. I’ve also been given a grant from the Challenged Athletes Foundation to purchase my own ski rig. Had I not had EDS, I would have simply hung up the skiis because I wasn’t able to do it anymore. But because of my illness, a whole new world was opened to me. 4. I’m grateful for my bad days because they remind me how sweet life is and how much good stuff is out there. I no longer waste time, energy or moments, because I know just how precious they are. 5. I’m grateful for the people in my life who accept me just as I am. The ones who know I hike a little differently or need a certain setup at CrossFit. The ones who know I might walk a little slower but still invite me to theme parks. The people in my life who accept and love me for me, just as much as I love myself. I’m not going to lie: life is, at times, a bumpy road to navigate with EDS. There are days I’m so exhausted or hurt so much I can’t imagine getting out of bed – but I always do. There are nights I’m blinking back tears while I type a friend. But I never give up and each push forward is a new victory. Because the best gift of all this holiday season is the life lessons EDS has given me. “ There is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think.”  —A.A. Milne, “Winnie the Pooh” We want to hear your story. Become a Mighty contributor here. Image via Thinkstock.

Amanda Wroten

Advice for Sharing Your Pain With Your Friends and Family

Sometimes living in the shell of chronic pain or a condition is lonely. Particularly at night. I often describe the experience of an invisible illness as isolating. Many times when someone sees a mobility aid or an artificial limb they understand what they are dealing with or are comforted. But that is not the case for those of us who navigate the world of the invisible pain and illness that will follow us forever. I am a fortunate individual in that my support network is stellar. I know people from all walks of life that care, and just like everyone else I have a few choice individuals in my network that I allow to see me at my weak moments, when I struggle, when I’m scared, and frankly when the burden gets to be too much. As I am up frequently at night, my closest confidant for a while has been on a similar schedule as mine, and as such has seen me in some rough moments. A new love in my life has moved in and seen the unmasked and unfiltered reality of hurting 24/7. Those people have been there for me, without question, sometimes when they had their own battles to fight. They never abandoned me. But, it wasn’t until recently that I realized what a heavy toll venting and support takes on your network. I erroneously thought that my friends were so used to how I feel sometimes that it didn’t bother them. I thought they were immune. And particularly, since both are strong male figures, I thought it didn’t impact them. I was wrong. People who care about you hurt when you hurt. Even the strongest among us are not immune to suffering. When someone enters your circle of trust, the care you take for another individual becomes important. Although you may or may not speak to your close friends everyday, we all want the best for those individuals. So, when the daily conversation becomes the reality of how you live, the pain is shared and absorbed by your support network. Sometimes that needs to happen. If you’re having a particularly rough day, a medical procedure, or dealing with a crisis, you need to get that information out, and unload. But when the daily niceties of “how are you” becomes the candid answer of a painful reality, it takes a toll on the people who care about you. It can become an unneeded focus of the relationship, drowning out the sunlight for happier moments that can release you from the day to day. I am not, by any stretch of the imagination, suggesting that you lie to your friends. I think exactly the opposite is true. One of my closest friends has the unique ability to tell what kind of day I’m having just by how I type my text messages. My significant other can read my face and my breathing. You can’t lie to those people. They know. And they don’t want you to lie to them; they want to help you. But they also feel helpless when they can’t and that hurts them. What you can do is take a certain amount of acceptance of your “normal.” Those of us that live with chronic pain know that “normal” for us would be daunting for someone who doesn’t know how to handle the daily toll of hurting and the wear and tear it puts on a person. What I am saying is that your friends who are “inner sanctum” already know what your life is like. They know your struggles.  They know what a good day is for you and what a bad day is for you. They know that even a normal day isn’t without pain. They know that you get angry at things you can’t do or independence that you lose. They know, probably as well as you do, what its like to be you. So just like you don’t need constant reminders of how life is limiting you – they don’t need it either. Reliving the struggle each day will overshadow the other things in your relationship, and you will soon find those who support you are as tired as you are. Be honest, but don’t dwell.  Your health should not be the focus of your relationship. It is but one small facet of who you are. Focus on the good, and know they are well aware of how your condition impacts you. It can be the great unsaid in the relationship, leaving room for happier moments. Your support network is there for your bad moments, as well as your good. But try to make it more good moments than bad. Reliving the daily struggle each moment with them may be what you need for a brief instance, but you’ll find more pleasure in your relationships, and more distraction and happiness in investigating other areas of interest and conversation. They’ll always be there for you, but sometimes even they struggle with how difficult your world can be.