Meridith O'Connor

@meridith-oconnor | contributor
Twenty-seven-year old Meridith O’Connor is a vibrant, fearless young woman, who currently resides in the great Midwestern city of St. Louis. Battling myasthenia gravis for over 15 years now, Meridith has used her illness to educate, motivate and inspire others to fulfill their dreams despite personal setbacks. A true go-getter and determined individual, Meridith recently earned her master’s degree in social work from Washington Univeristy in St. Louis with a concentration in health. Through her education and personal experience, Meridith hopes to continue working on behalf of those who cope with physical adversity. Meridith is best known for her kind heart, her adoration for her family and friends, and last but not least, her passion for fashion.
Natalie Sayre

Understanding Neuro-Fatigue and the Exhaustion of Chronic Illness

As my neurological symptoms associated with chronic Lyme disease and chronic migraine have become more severe, the terms “brain fog” and “fatigue” just feel inadequate as a means to describe what I am experiencing. However, I was recently introduced to the idea of “neuro-fatigue,” and finally felt like I had the words to describe the combination of symptoms that have become my norm so much of the time. This fatigue is different than tiredness or a lack of physical energy. It stems from sensitivity to stimuli of any kind, and makes outings, errands, phone calls and visiting with friends taxing. It calls for many periods of “rest-time” during daytime hours, and often leaves me homebound and isolated. It can be difficult to identify when entangled with other symptoms of chronic pain, but I can’t express how much doing so has helped me to understand my situation better — I hope it helps you too. Neuro-fatigue feels disorienting and exhausting. It feels like every thought requires effort. Typing out a text, getting out of bed to get medication from a cabinet, completing a basic task like scheduling an appointment online — it all asks for brainpower that I simply do not have much of the time. Existing in a body with an exhausted and frayed nervous system feels like I am running on fumes. Accomplishing even the smallest task entails having to push my energetic gas pedal to the floor, all to achieve just the smallest burst of fuel so I can try to push through the exhaustion and get through the task. Most often, I completely “stall out” after I’m done (sometimes even having to stop midway and take a breather) and then I am back to “rest” mode until I can try again. Some days, it feels like instead of having a normal IV delivering medication or vitamins into my bloodstream; I have an IV in my arm that is sucking my mental and physical stamina directly out of me when I try to do almost anything. This neuro-fatigue is not remedied by the standard approaches to managing normal fatigue. But it can be temporarily relieved by giving my brain a break through rest. What this rest looks like varies day to day and hour by hour. For me, it always involves soft lighting, limited interaction, reduced stimuli and quieting my nervous system. It most often takes the form of me lying in bed with the curtains pulled and my laptop closed, listening to music, podcasts, meditations or simply resting in quiet. Sometimes even those restful activities prove too stimulating. I am often baffled by how I can feel alert (not sleepy) and yet fatigued just by “being.” Sometimes even the simple act of breathing feels like loud effort. My limbs feel weak, I drop things and knock things over more easily and merely thinking through basic decisions feels like trying to walk blindfolded, in the dark, without a map, on a trail that is completely overgrown with thick brush with nothing to whack it away and no energy to have been able to do so anyway. This feeling exists on a spectrum, and described above is how it feels at its worst. When it is less severe, it feels like I am a superhero and I marvel at how incredible it is to be able to live with more clarity and a higher stimuli threshold. When I am out in the world, neuro-fatigue often presents as dizziness, lightheadedness and sensory overload. I almost feel as if I am tipsy. Objects feel like they’re coming at me quickly and my eyes strain and struggle to take in the world around me. Intense light sensitivity gives me the sensation I’m looking into direct sunlight, constantly. I squint against pain from normal stimuli and it’s hard to focus my vision on any one thing. I watch the people around me existing effortlessly in that same environment and cannot imagine the feeling of ease they seem to exude. Holding basic conversations becomes painful. I have sharp pain in my eyes while I try to make eye contact during conversations and I find myself diverting them to “bland” things to look at because somehow that is less painful. Everything around me feels louder and I am overwhelmed by a nervous system that shouts out at me saying, “I don’t know what to do, but I can’t do this.” Many people might think that by just going home and taking a nap, that will solve the problem and my symptoms will disappear. Unfortunately, when my neuro-fatigue is at its worst, my nervous system is too stimulated to nap and the only real solution is to shut down the neurological stimuli and wait. I need to find a dark or softly lit, quiet place and not talk to or interact with anyone. For someone who has always thrived on social interaction, this is especially isolating and scary. It has taken me many years, much practice and a good number of tears, to accept this as a necessary element of my current reality. I’ve had to learn radical acceptance of a new way of being that completely goes against the way I spent the first 20 years of my life. I’ve had to learn patience with the process and understand that it takes time for the frayed energy pulsing through my nervous system to settle. The buzzy feeling that sends me looking for shelter commonly turns into a blurry exhausted one once I have settled down. In the final stage, it becomes the all too familiar neuro-fatigue that swallows up every last ounce of my mental energy. This symptom is what makes rest an invaluable part of my self-care and healing. It is why my social life has been slashed and frustratingly often, I have to prioritize time doing nothing in order to do anything. Neuro-fatigue makes it hard for me to have friends and family visit or stay with us, because even the smallest interactions ask for mental energy that I just don’t have. It’s why I rarely drive, because I don’t trust my brain to stay alert enough to safely handle the stimuli around me. It’s why I have to feel “up to” phone calls with my mom and best friend to just talk about nothing and catch up. It’s why mindfulness has become a lifeline. When I can’t do anything, I can close my eyes and focus on my breathing and the sensations in my body. I can harness my thoughts and redirect them from fear stories to gentle and loving self talk. My brain is inflamed and compromised (something I have to remind myself of constantly). A healthy brain is restored by sleep, can handle stimuli at a higher threshold and responds to fatigue with exhaustion. My brain is hurting (yours may be also). My nervous system is suffering injury and assault from bacterial infection and inflammation. It is also on “red alert” at the slightest sign of pain due to years of unrelenting migraines. Rest looks different for me than it does for a healthy brain and it is up to me to be in charge of respecting that fact. I could write a whole separate blog (or book) on the next-level debilitation that comes from experiencing neuro-fatigue coupled with chronic severe pain. They feed into each other with fervor and at times feel so utterly demoralizing, it can be hard to hope for better days. There are no words to fully describe the intense physical and mental drain that merely existing can feel like when your body is seemingly crumbling at every turn. But for today, I just want to give words and validity to these feelings and to every person living in this reality. To share my experience of the weariness and the dense fog that can descend over my mind and soul due to having to cope with neuro-fatigue for months and years on end. It’s easy to become frustrated with a fatigued brain. I desperately wish I could “nap away” the feeling of neuro-fatigue. It’s hard to explain to others and harder to live with. To those of you living with or who know or love someone living with it too…I send you my heartfelt hope that we will all find a path to healing. I believe that we can, and I hope you do too!

Community Voices

Give Yourself a Break

<p>Give Yourself a Break</p>

The Reality of My Life With Myasthenia Gravis

Before I was officially diagnosed with myasthenia gravis but experiencing some of the symptoms that characterize this disease, I expressed my concern for my health to a few people, as I knew something was just “off.” The responses varied, but for years, I struggled to get people to believe what I was going through. Unbeknownst to me, convincing individuals of my lived experience at this time was only the beginning of a long road ahead, paved with discrimination, stereotyping and judgment. The official diagnosis provided validation, however, to some people, “myasthenia gravis” was just words on a piece of paper. For me, it was my everyday life and still is. Living with an invisible illness means constantly having to prove your truth to others. It can be utterly exhausting, always defending something you know and feel with such certainty. Some of you may be wondering, “Why do you feel like you have to do this? Why do you care what others think? Why is it so important to get others to understand this part of your life?” Promoting this understanding is crucial to my daily living. I need others to realize the impact this illness has in all the different areas of my life in order to be an accepted friend, family member, colleague and contributing member of society. More importantly, this illness is larger than my own experience, larger than a medical diagnosis, and more than just weakness within the muscles of my body. Illness can mean losing friends and people you care about because they think you’re lying or lazy, or they’re tired of you canceling plans on them last minute. Illness can mean sacrificing incredible job opportunities you are passionate about because you have had too many employers that are unwilling or unable to accommodate you in the workplace. Illness can mean revealing the most vulnerable thing about you to professors and administrators because you need adaptations in and outside of the classroom in order to be a successful student. Illness can mean having to utilize the elevator or a disabled parking spot and people patronizing you because they cannot see what’s happening within your body. Illness can mean electing to forego social events because you fear you won’t be able to keep up with others, or you cannot afford to spend energy on something that sometimes seems frivolous in comparison to work, school and your health. Illness can mean postponing the start of a family as taking care of your health is hard enough, let alone taking care of children that depend on you. Illness can mean prioritizing activities of daily living, knowing your to-do list will never be completed. Illness can mean people questioning and challenging the existence and severity of your illness when they have no business doing so. Illness can mean a life of encounters filled with shame, guilt, pain, loss, scrutiny, accusation and misunderstanding. And when such encounters occur, we are left feeling unworthy when all we want is a life filled with freedom, choice, joy, success, acceptance, dignity and love. What hurts the most is meeting people who believe they have the authority to have an opinion about my lived experience. It is the off-handed comments that reiterate my frustration with the societal understanding of illness and disability, such as: “Well at least it’s not cancer,” “you don’t look sick,” “you’re too young to be tired,” or, “myasthenia gravis is actually relatively manageable and people can live pretty normal lives with this diagnosis.” On some level I can appreciate the hint of empathy weaved within these statements. However, in all honesty, I feel like I am getting gut-punched every time I hear such sentiments. What is the intention behind these statements? Why is there a need to compare or rate illnesses and stack them up against each other? Why is there a need to make light of so many people’s situations? Is it to make patients feel like “things could be worse?” Or are those making these comments trying to mitigate an uncomfortable topic, as illness can sometimes be taboo to discuss? Why do others feel the need to appraise the reality of my illness when they have absolutely no idea what it feels like to live with my MG? Being criticized and ridiculed by my own community, other chronically ill people, was the last straw for me. I recently participated in a social media opportunity that allowed me to share my experience living with myasthenia gravis. As I always do, I made note that my experience is solely my own, and I only reveal my story in the hope people can feel comforted, cared for and not alone. For the most part, people embraced my vulnerability and appreciated my willingness to share my story and promote awareness for this disease. But there were a select few who felt the need to belittle me and depreciate my journey with MG. I was shocked, but I took the opportunity as a learning experience. Not everyone is going to like me, understand me or agree with me. I’m OK with that, however I do not accept the unwarranted denial of my chronic illness by others. This is why I care. This is why I am committed to advocating for a world with a little bit more respect, tolerance and equality. I’m not naïve. I know people are allowed to have an opinion, but my life with chronic illness isn’t here to satisfy your expectations. We all have our own paths in life. Our routes may look different, but we are all trying to get to the same destination. Whichever course in life you decide, choose one that propels others forward, not one that sets others back.

The Reality of My Life With Myasthenia Gravis

Before I was officially diagnosed with myasthenia gravis but experiencing some of the symptoms that characterize this disease, I expressed my concern for my health to a few people, as I knew something was just “off.” The responses varied, but for years, I struggled to get people to believe what I was going through. Unbeknownst to me, convincing individuals of my lived experience at this time was only the beginning of a long road ahead, paved with discrimination, stereotyping and judgment. The official diagnosis provided validation, however, to some people, “myasthenia gravis” was just words on a piece of paper. For me, it was my everyday life and still is. Living with an invisible illness means constantly having to prove your truth to others. It can be utterly exhausting, always defending something you know and feel with such certainty. Some of you may be wondering, “Why do you feel like you have to do this? Why do you care what others think? Why is it so important to get others to understand this part of your life?” Promoting this understanding is crucial to my daily living. I need others to realize the impact this illness has in all the different areas of my life in order to be an accepted friend, family member, colleague and contributing member of society. More importantly, this illness is larger than my own experience, larger than a medical diagnosis, and more than just weakness within the muscles of my body. Illness can mean losing friends and people you care about because they think you’re lying or lazy, or they’re tired of you canceling plans on them last minute. Illness can mean sacrificing incredible job opportunities you are passionate about because you have had too many employers that are unwilling or unable to accommodate you in the workplace. Illness can mean revealing the most vulnerable thing about you to professors and administrators because you need adaptations in and outside of the classroom in order to be a successful student. Illness can mean having to utilize the elevator or a disabled parking spot and people patronizing you because they cannot see what’s happening within your body. Illness can mean electing to forego social events because you fear you won’t be able to keep up with others, or you cannot afford to spend energy on something that sometimes seems frivolous in comparison to work, school and your health. Illness can mean postponing the start of a family as taking care of your health is hard enough, let alone taking care of children that depend on you. Illness can mean prioritizing activities of daily living, knowing your to-do list will never be completed. Illness can mean people questioning and challenging the existence and severity of your illness when they have no business doing so. Illness can mean a life of encounters filled with shame, guilt, pain, loss, scrutiny, accusation and misunderstanding. And when such encounters occur, we are left feeling unworthy when all we want is a life filled with freedom, choice, joy, success, acceptance, dignity and love. What hurts the most is meeting people who believe they have the authority to have an opinion about my lived experience. It is the off-handed comments that reiterate my frustration with the societal understanding of illness and disability, such as: “Well at least it’s not cancer,” “you don’t look sick,” “you’re too young to be tired,” or, “myasthenia gravis is actually relatively manageable and people can live pretty normal lives with this diagnosis.” On some level I can appreciate the hint of empathy weaved within these statements. However, in all honesty, I feel like I am getting gut-punched every time I hear such sentiments. What is the intention behind these statements? Why is there a need to compare or rate illnesses and stack them up against each other? Why is there a need to make light of so many people’s situations? Is it to make patients feel like “things could be worse?” Or are those making these comments trying to mitigate an uncomfortable topic, as illness can sometimes be taboo to discuss? Why do others feel the need to appraise the reality of my illness when they have absolutely no idea what it feels like to live with my MG? Being criticized and ridiculed by my own community, other chronically ill people, was the last straw for me. I recently participated in a social media opportunity that allowed me to share my experience living with myasthenia gravis. As I always do, I made note that my experience is solely my own, and I only reveal my story in the hope people can feel comforted, cared for and not alone. For the most part, people embraced my vulnerability and appreciated my willingness to share my story and promote awareness for this disease. But there were a select few who felt the need to belittle me and depreciate my journey with MG. I was shocked, but I took the opportunity as a learning experience. Not everyone is going to like me, understand me or agree with me. I’m OK with that, however I do not accept the unwarranted denial of my chronic illness by others. This is why I care. This is why I am committed to advocating for a world with a little bit more respect, tolerance and equality. I’m not naïve. I know people are allowed to have an opinion, but my life with chronic illness isn’t here to satisfy your expectations. We all have our own paths in life. Our routes may look different, but we are all trying to get to the same destination. Whichever course in life you decide, choose one that propels others forward, not one that sets others back.

The Reality of My Life With Myasthenia Gravis

Before I was officially diagnosed with myasthenia gravis but experiencing some of the symptoms that characterize this disease, I expressed my concern for my health to a few people, as I knew something was just “off.” The responses varied, but for years, I struggled to get people to believe what I was going through. Unbeknownst to me, convincing individuals of my lived experience at this time was only the beginning of a long road ahead, paved with discrimination, stereotyping and judgment. The official diagnosis provided validation, however, to some people, “myasthenia gravis” was just words on a piece of paper. For me, it was my everyday life and still is. Living with an invisible illness means constantly having to prove your truth to others. It can be utterly exhausting, always defending something you know and feel with such certainty. Some of you may be wondering, “Why do you feel like you have to do this? Why do you care what others think? Why is it so important to get others to understand this part of your life?” Promoting this understanding is crucial to my daily living. I need others to realize the impact this illness has in all the different areas of my life in order to be an accepted friend, family member, colleague and contributing member of society. More importantly, this illness is larger than my own experience, larger than a medical diagnosis, and more than just weakness within the muscles of my body. Illness can mean losing friends and people you care about because they think you’re lying or lazy, or they’re tired of you canceling plans on them last minute. Illness can mean sacrificing incredible job opportunities you are passionate about because you have had too many employers that are unwilling or unable to accommodate you in the workplace. Illness can mean revealing the most vulnerable thing about you to professors and administrators because you need adaptations in and outside of the classroom in order to be a successful student. Illness can mean having to utilize the elevator or a disabled parking spot and people patronizing you because they cannot see what’s happening within your body. Illness can mean electing to forego social events because you fear you won’t be able to keep up with others, or you cannot afford to spend energy on something that sometimes seems frivolous in comparison to work, school and your health. Illness can mean postponing the start of a family as taking care of your health is hard enough, let alone taking care of children that depend on you. Illness can mean prioritizing activities of daily living, knowing your to-do list will never be completed. Illness can mean people questioning and challenging the existence and severity of your illness when they have no business doing so. Illness can mean a life of encounters filled with shame, guilt, pain, loss, scrutiny, accusation and misunderstanding. And when such encounters occur, we are left feeling unworthy when all we want is a life filled with freedom, choice, joy, success, acceptance, dignity and love. What hurts the most is meeting people who believe they have the authority to have an opinion about my lived experience. It is the off-handed comments that reiterate my frustration with the societal understanding of illness and disability, such as: “Well at least it’s not cancer,” “you don’t look sick,” “you’re too young to be tired,” or, “myasthenia gravis is actually relatively manageable and people can live pretty normal lives with this diagnosis.” On some level I can appreciate the hint of empathy weaved within these statements. However, in all honesty, I feel like I am getting gut-punched every time I hear such sentiments. What is the intention behind these statements? Why is there a need to compare or rate illnesses and stack them up against each other? Why is there a need to make light of so many people’s situations? Is it to make patients feel like “things could be worse?” Or are those making these comments trying to mitigate an uncomfortable topic, as illness can sometimes be taboo to discuss? Why do others feel the need to appraise the reality of my illness when they have absolutely no idea what it feels like to live with my MG? Being criticized and ridiculed by my own community, other chronically ill people, was the last straw for me. I recently participated in a social media opportunity that allowed me to share my experience living with myasthenia gravis. As I always do, I made note that my experience is solely my own, and I only reveal my story in the hope people can feel comforted, cared for and not alone. For the most part, people embraced my vulnerability and appreciated my willingness to share my story and promote awareness for this disease. But there were a select few who felt the need to belittle me and depreciate my journey with MG. I was shocked, but I took the opportunity as a learning experience. Not everyone is going to like me, understand me or agree with me. I’m OK with that, however I do not accept the unwarranted denial of my chronic illness by others. This is why I care. This is why I am committed to advocating for a world with a little bit more respect, tolerance and equality. I’m not naïve. I know people are allowed to have an opinion, but my life with chronic illness isn’t here to satisfy your expectations. We all have our own paths in life. Our routes may look different, but we are all trying to get to the same destination. Whichever course in life you decide, choose one that propels others forward, not one that sets others back.

The Reality of My Life With Myasthenia Gravis

Before I was officially diagnosed with myasthenia gravis but experiencing some of the symptoms that characterize this disease, I expressed my concern for my health to a few people, as I knew something was just “off.” The responses varied, but for years, I struggled to get people to believe what I was going through. Unbeknownst to me, convincing individuals of my lived experience at this time was only the beginning of a long road ahead, paved with discrimination, stereotyping and judgment. The official diagnosis provided validation, however, to some people, “myasthenia gravis” was just words on a piece of paper. For me, it was my everyday life and still is. Living with an invisible illness means constantly having to prove your truth to others. It can be utterly exhausting, always defending something you know and feel with such certainty. Some of you may be wondering, “Why do you feel like you have to do this? Why do you care what others think? Why is it so important to get others to understand this part of your life?” Promoting this understanding is crucial to my daily living. I need others to realize the impact this illness has in all the different areas of my life in order to be an accepted friend, family member, colleague and contributing member of society. More importantly, this illness is larger than my own experience, larger than a medical diagnosis, and more than just weakness within the muscles of my body. Illness can mean losing friends and people you care about because they think you’re lying or lazy, or they’re tired of you canceling plans on them last minute. Illness can mean sacrificing incredible job opportunities you are passionate about because you have had too many employers that are unwilling or unable to accommodate you in the workplace. Illness can mean revealing the most vulnerable thing about you to professors and administrators because you need adaptations in and outside of the classroom in order to be a successful student. Illness can mean having to utilize the elevator or a disabled parking spot and people patronizing you because they cannot see what’s happening within your body. Illness can mean electing to forego social events because you fear you won’t be able to keep up with others, or you cannot afford to spend energy on something that sometimes seems frivolous in comparison to work, school and your health. Illness can mean postponing the start of a family as taking care of your health is hard enough, let alone taking care of children that depend on you. Illness can mean prioritizing activities of daily living, knowing your to-do list will never be completed. Illness can mean people questioning and challenging the existence and severity of your illness when they have no business doing so. Illness can mean a life of encounters filled with shame, guilt, pain, loss, scrutiny, accusation and misunderstanding. And when such encounters occur, we are left feeling unworthy when all we want is a life filled with freedom, choice, joy, success, acceptance, dignity and love. What hurts the most is meeting people who believe they have the authority to have an opinion about my lived experience. It is the off-handed comments that reiterate my frustration with the societal understanding of illness and disability, such as: “Well at least it’s not cancer,” “you don’t look sick,” “you’re too young to be tired,” or, “myasthenia gravis is actually relatively manageable and people can live pretty normal lives with this diagnosis.” On some level I can appreciate the hint of empathy weaved within these statements. However, in all honesty, I feel like I am getting gut-punched every time I hear such sentiments. What is the intention behind these statements? Why is there a need to compare or rate illnesses and stack them up against each other? Why is there a need to make light of so many people’s situations? Is it to make patients feel like “things could be worse?” Or are those making these comments trying to mitigate an uncomfortable topic, as illness can sometimes be taboo to discuss? Why do others feel the need to appraise the reality of my illness when they have absolutely no idea what it feels like to live with my MG? Being criticized and ridiculed by my own community, other chronically ill people, was the last straw for me. I recently participated in a social media opportunity that allowed me to share my experience living with myasthenia gravis. As I always do, I made note that my experience is solely my own, and I only reveal my story in the hope people can feel comforted, cared for and not alone. For the most part, people embraced my vulnerability and appreciated my willingness to share my story and promote awareness for this disease. But there were a select few who felt the need to belittle me and depreciate my journey with MG. I was shocked, but I took the opportunity as a learning experience. Not everyone is going to like me, understand me or agree with me. I’m OK with that, however I do not accept the unwarranted denial of my chronic illness by others. This is why I care. This is why I am committed to advocating for a world with a little bit more respect, tolerance and equality. I’m not naïve. I know people are allowed to have an opinion, but my life with chronic illness isn’t here to satisfy your expectations. We all have our own paths in life. Our routes may look different, but we are all trying to get to the same destination. Whichever course in life you decide, choose one that propels others forward, not one that sets others back.

The Reality of My Life With Myasthenia Gravis

Before I was officially diagnosed with myasthenia gravis but experiencing some of the symptoms that characterize this disease, I expressed my concern for my health to a few people, as I knew something was just “off.” The responses varied, but for years, I struggled to get people to believe what I was going through. Unbeknownst to me, convincing individuals of my lived experience at this time was only the beginning of a long road ahead, paved with discrimination, stereotyping and judgment. The official diagnosis provided validation, however, to some people, “myasthenia gravis” was just words on a piece of paper. For me, it was my everyday life and still is. Living with an invisible illness means constantly having to prove your truth to others. It can be utterly exhausting, always defending something you know and feel with such certainty. Some of you may be wondering, “Why do you feel like you have to do this? Why do you care what others think? Why is it so important to get others to understand this part of your life?” Promoting this understanding is crucial to my daily living. I need others to realize the impact this illness has in all the different areas of my life in order to be an accepted friend, family member, colleague and contributing member of society. More importantly, this illness is larger than my own experience, larger than a medical diagnosis, and more than just weakness within the muscles of my body. Illness can mean losing friends and people you care about because they think you’re lying or lazy, or they’re tired of you canceling plans on them last minute. Illness can mean sacrificing incredible job opportunities you are passionate about because you have had too many employers that are unwilling or unable to accommodate you in the workplace. Illness can mean revealing the most vulnerable thing about you to professors and administrators because you need adaptations in and outside of the classroom in order to be a successful student. Illness can mean having to utilize the elevator or a disabled parking spot and people patronizing you because they cannot see what’s happening within your body. Illness can mean electing to forego social events because you fear you won’t be able to keep up with others, or you cannot afford to spend energy on something that sometimes seems frivolous in comparison to work, school and your health. Illness can mean postponing the start of a family as taking care of your health is hard enough, let alone taking care of children that depend on you. Illness can mean prioritizing activities of daily living, knowing your to-do list will never be completed. Illness can mean people questioning and challenging the existence and severity of your illness when they have no business doing so. Illness can mean a life of encounters filled with shame, guilt, pain, loss, scrutiny, accusation and misunderstanding. And when such encounters occur, we are left feeling unworthy when all we want is a life filled with freedom, choice, joy, success, acceptance, dignity and love. What hurts the most is meeting people who believe they have the authority to have an opinion about my lived experience. It is the off-handed comments that reiterate my frustration with the societal understanding of illness and disability, such as: “Well at least it’s not cancer,” “you don’t look sick,” “you’re too young to be tired,” or, “myasthenia gravis is actually relatively manageable and people can live pretty normal lives with this diagnosis.” On some level I can appreciate the hint of empathy weaved within these statements. However, in all honesty, I feel like I am getting gut-punched every time I hear such sentiments. What is the intention behind these statements? Why is there a need to compare or rate illnesses and stack them up against each other? Why is there a need to make light of so many people’s situations? Is it to make patients feel like “things could be worse?” Or are those making these comments trying to mitigate an uncomfortable topic, as illness can sometimes be taboo to discuss? Why do others feel the need to appraise the reality of my illness when they have absolutely no idea what it feels like to live with my MG? Being criticized and ridiculed by my own community, other chronically ill people, was the last straw for me. I recently participated in a social media opportunity that allowed me to share my experience living with myasthenia gravis. As I always do, I made note that my experience is solely my own, and I only reveal my story in the hope people can feel comforted, cared for and not alone. For the most part, people embraced my vulnerability and appreciated my willingness to share my story and promote awareness for this disease. But there were a select few who felt the need to belittle me and depreciate my journey with MG. I was shocked, but I took the opportunity as a learning experience. Not everyone is going to like me, understand me or agree with me. I’m OK with that, however I do not accept the unwarranted denial of my chronic illness by others. This is why I care. This is why I am committed to advocating for a world with a little bit more respect, tolerance and equality. I’m not naïve. I know people are allowed to have an opinion, but my life with chronic illness isn’t here to satisfy your expectations. We all have our own paths in life. Our routes may look different, but we are all trying to get to the same destination. Whichever course in life you decide, choose one that propels others forward, not one that sets others back.

The Reality of My Life With Myasthenia Gravis

Before I was officially diagnosed with myasthenia gravis but experiencing some of the symptoms that characterize this disease, I expressed my concern for my health to a few people, as I knew something was just “off.” The responses varied, but for years, I struggled to get people to believe what I was going through. Unbeknownst to me, convincing individuals of my lived experience at this time was only the beginning of a long road ahead, paved with discrimination, stereotyping and judgment. The official diagnosis provided validation, however, to some people, “myasthenia gravis” was just words on a piece of paper. For me, it was my everyday life and still is. Living with an invisible illness means constantly having to prove your truth to others. It can be utterly exhausting, always defending something you know and feel with such certainty. Some of you may be wondering, “Why do you feel like you have to do this? Why do you care what others think? Why is it so important to get others to understand this part of your life?” Promoting this understanding is crucial to my daily living. I need others to realize the impact this illness has in all the different areas of my life in order to be an accepted friend, family member, colleague and contributing member of society. More importantly, this illness is larger than my own experience, larger than a medical diagnosis, and more than just weakness within the muscles of my body. Illness can mean losing friends and people you care about because they think you’re lying or lazy, or they’re tired of you canceling plans on them last minute. Illness can mean sacrificing incredible job opportunities you are passionate about because you have had too many employers that are unwilling or unable to accommodate you in the workplace. Illness can mean revealing the most vulnerable thing about you to professors and administrators because you need adaptations in and outside of the classroom in order to be a successful student. Illness can mean having to utilize the elevator or a disabled parking spot and people patronizing you because they cannot see what’s happening within your body. Illness can mean electing to forego social events because you fear you won’t be able to keep up with others, or you cannot afford to spend energy on something that sometimes seems frivolous in comparison to work, school and your health. Illness can mean postponing the start of a family as taking care of your health is hard enough, let alone taking care of children that depend on you. Illness can mean prioritizing activities of daily living, knowing your to-do list will never be completed. Illness can mean people questioning and challenging the existence and severity of your illness when they have no business doing so. Illness can mean a life of encounters filled with shame, guilt, pain, loss, scrutiny, accusation and misunderstanding. And when such encounters occur, we are left feeling unworthy when all we want is a life filled with freedom, choice, joy, success, acceptance, dignity and love. What hurts the most is meeting people who believe they have the authority to have an opinion about my lived experience. It is the off-handed comments that reiterate my frustration with the societal understanding of illness and disability, such as: “Well at least it’s not cancer,” “you don’t look sick,” “you’re too young to be tired,” or, “myasthenia gravis is actually relatively manageable and people can live pretty normal lives with this diagnosis.” On some level I can appreciate the hint of empathy weaved within these statements. However, in all honesty, I feel like I am getting gut-punched every time I hear such sentiments. What is the intention behind these statements? Why is there a need to compare or rate illnesses and stack them up against each other? Why is there a need to make light of so many people’s situations? Is it to make patients feel like “things could be worse?” Or are those making these comments trying to mitigate an uncomfortable topic, as illness can sometimes be taboo to discuss? Why do others feel the need to appraise the reality of my illness when they have absolutely no idea what it feels like to live with my MG? Being criticized and ridiculed by my own community, other chronically ill people, was the last straw for me. I recently participated in a social media opportunity that allowed me to share my experience living with myasthenia gravis. As I always do, I made note that my experience is solely my own, and I only reveal my story in the hope people can feel comforted, cared for and not alone. For the most part, people embraced my vulnerability and appreciated my willingness to share my story and promote awareness for this disease. But there were a select few who felt the need to belittle me and depreciate my journey with MG. I was shocked, but I took the opportunity as a learning experience. Not everyone is going to like me, understand me or agree with me. I’m OK with that, however I do not accept the unwarranted denial of my chronic illness by others. This is why I care. This is why I am committed to advocating for a world with a little bit more respect, tolerance and equality. I’m not naïve. I know people are allowed to have an opinion, but my life with chronic illness isn’t here to satisfy your expectations. We all have our own paths in life. Our routes may look different, but we are all trying to get to the same destination. Whichever course in life you decide, choose one that propels others forward, not one that sets others back.

The Reality of My Life With Myasthenia Gravis

Before I was officially diagnosed with myasthenia gravis but experiencing some of the symptoms that characterize this disease, I expressed my concern for my health to a few people, as I knew something was just “off.” The responses varied, but for years, I struggled to get people to believe what I was going through. Unbeknownst to me, convincing individuals of my lived experience at this time was only the beginning of a long road ahead, paved with discrimination, stereotyping and judgment. The official diagnosis provided validation, however, to some people, “myasthenia gravis” was just words on a piece of paper. For me, it was my everyday life and still is. Living with an invisible illness means constantly having to prove your truth to others. It can be utterly exhausting, always defending something you know and feel with such certainty. Some of you may be wondering, “Why do you feel like you have to do this? Why do you care what others think? Why is it so important to get others to understand this part of your life?” Promoting this understanding is crucial to my daily living. I need others to realize the impact this illness has in all the different areas of my life in order to be an accepted friend, family member, colleague and contributing member of society. More importantly, this illness is larger than my own experience, larger than a medical diagnosis, and more than just weakness within the muscles of my body. Illness can mean losing friends and people you care about because they think you’re lying or lazy, or they’re tired of you canceling plans on them last minute. Illness can mean sacrificing incredible job opportunities you are passionate about because you have had too many employers that are unwilling or unable to accommodate you in the workplace. Illness can mean revealing the most vulnerable thing about you to professors and administrators because you need adaptations in and outside of the classroom in order to be a successful student. Illness can mean having to utilize the elevator or a disabled parking spot and people patronizing you because they cannot see what’s happening within your body. Illness can mean electing to forego social events because you fear you won’t be able to keep up with others, or you cannot afford to spend energy on something that sometimes seems frivolous in comparison to work, school and your health. Illness can mean postponing the start of a family as taking care of your health is hard enough, let alone taking care of children that depend on you. Illness can mean prioritizing activities of daily living, knowing your to-do list will never be completed. Illness can mean people questioning and challenging the existence and severity of your illness when they have no business doing so. Illness can mean a life of encounters filled with shame, guilt, pain, loss, scrutiny, accusation and misunderstanding. And when such encounters occur, we are left feeling unworthy when all we want is a life filled with freedom, choice, joy, success, acceptance, dignity and love. What hurts the most is meeting people who believe they have the authority to have an opinion about my lived experience. It is the off-handed comments that reiterate my frustration with the societal understanding of illness and disability, such as: “Well at least it’s not cancer,” “you don’t look sick,” “you’re too young to be tired,” or, “myasthenia gravis is actually relatively manageable and people can live pretty normal lives with this diagnosis.” On some level I can appreciate the hint of empathy weaved within these statements. However, in all honesty, I feel like I am getting gut-punched every time I hear such sentiments. What is the intention behind these statements? Why is there a need to compare or rate illnesses and stack them up against each other? Why is there a need to make light of so many people’s situations? Is it to make patients feel like “things could be worse?” Or are those making these comments trying to mitigate an uncomfortable topic, as illness can sometimes be taboo to discuss? Why do others feel the need to appraise the reality of my illness when they have absolutely no idea what it feels like to live with my MG? Being criticized and ridiculed by my own community, other chronically ill people, was the last straw for me. I recently participated in a social media opportunity that allowed me to share my experience living with myasthenia gravis. As I always do, I made note that my experience is solely my own, and I only reveal my story in the hope people can feel comforted, cared for and not alone. For the most part, people embraced my vulnerability and appreciated my willingness to share my story and promote awareness for this disease. But there were a select few who felt the need to belittle me and depreciate my journey with MG. I was shocked, but I took the opportunity as a learning experience. Not everyone is going to like me, understand me or agree with me. I’m OK with that, however I do not accept the unwarranted denial of my chronic illness by others. This is why I care. This is why I am committed to advocating for a world with a little bit more respect, tolerance and equality. I’m not naïve. I know people are allowed to have an opinion, but my life with chronic illness isn’t here to satisfy your expectations. We all have our own paths in life. Our routes may look different, but we are all trying to get to the same destination. Whichever course in life you decide, choose one that propels others forward, not one that sets others back.

Finding Accommodating Employment When Chronically Ill

Finding employment with a disability is a struggle to say the least — no matter how reputable your academic credentials are or how robust your resume may be. Nevertheless, I believed that by continuing my education, I would advance my career in an effort to satisfy not only my professional goals, but society’s expectations of a respectable profession. This past May I graduated with a Master’s degree in social work with a concentration in health from one of the most recognized programs in the nation. Pursuing this degree was a risky endeavor (physically and financially), yet I felt that the benefits significantly outweighed the costs in the long run. While I am forever grateful for the degree I earned and privilege to attend an institution that furthered my knowledge, skill, and expertise, I seemed to have trusted in a system that has failed me again.  Let me explain — According to the U.S. Department of Labor, people with disabilities are less likely to have completed a Bachelor’s degree and higher than those who do not have a disability. Furthermore, the U.S. Bureau of Labor Statistics stated that the unemployment rate in 2017 for people with a disability was 9.2 percent, more than double of those who do not have a disability. These reports frustrate me for a multitude of reasons, but let me try to dissect why this is problematic and concerning. First, I believe one of the main reasons those with disabilities are less likely to have completed a higher education is due to the inaccessibility of education for this specific population.  Middle school and high school presented me with so many challenges physically, thus inclining many to hypothesize that my chronic illness was going to create too many hurdles for me to be successful. “How is she going to physically get around campus?”  “How is she going to keep up with her classes?”  “How will she be able to afford college when she can’t work?” “How will she be able to maintain her health if she goes away to college and her care team is at home?” Yes, these are all valid questions, but it troubles me that these reservations were considered potential deal-breakers for following my dreams.  I know there are people with disabilities who see these questions as realistic considerations and I would agree; but if these are issues most people with disabilities are facing, why should all responsibility be put on us to accommodate these needs?  I call attention to this because I know there are many individuals like me who have a disability, have a passion for learning, and are extremely hesitant to pursue a degree simply because the standard of accessibility in education has fallen too short. Policy makers within the education and healthcare sectors must come together, listen to the needs and personal testimonies of those with disabilities, and collaborate to create equitable opportunities for learning. In spite of my disease, I decided to pursue a higher education.  I am not going to explore the politics of disability accommodations within education at this time only because I feel many of the issues I am about to discuss regarding accommodations in the workforce are applicable. What I want to analyze is a very specific problem that I think many individuals like me are facing.  Put aside the diversity within the statistics I mentioned earlier, as I am speaking only to a particular category of people aka people who have earned an education who have a disability and are below the age of 65 and want/need to work. As someone who has the desire and will to work, has the personal and professional leverage that distinguishes my aptitude and work ethic, and has the credentials and qualifications to do so, why is it so difficult to find an employer that will provide me with the flexibility I need to care for my chronic illness? The problem is not “people with disabilities can’t work;” it is the societal norms of the employment industry and the rigidity of employer policies that ultimately sever the value brought forth by those with disabilities, disabling them from the workforce.  (Please note I am not referencing those who have a disability who are unable to work as a result of their health difficulties.  This is valid, justifiable and should always be respected.) I go back and forth, questioning, “Am I asking too much?”  “Am I being unreasonable?”  Then I quickly remind myself that I have put myself out there, pushed my physical limits and conformed to a social norm I can’t always satisfy. When I do, I find myself sick and completely unavailable to fulfill the responsibilities demanded of me. That is in no way sustainable. Part of my decision to go back to graduate school was because I thought it would propel me into a leadership position that would provide me with autonomy, flexibility, and authority over balancing my professional role with my health and well-being. I believe this will happen, I just hope it’ll be sooner rather than later.  But right now, I am a highly educated individual with a boatload of personal experience, still forcing myself to adapt to an able-bodied world. The problem is not me; I have to keep retelling myself this daily as I still struggle to find employment that will accommodate my needs. Can financial stability and stable health coexist? Am I going to ultimately have to sacrifice one for another? I refuse to surrender to this standard and am determined to find that both can exist in harmony. Bottom line: There are people who have a disability and want to work and need to work in order to be independent human beings.  However, many times they are neglected or disregarded because they are quickly regarded as “unaccountable” or “unreliable” as a result of their disability. My illness is unpredictable; it waxes and wanes from hour to hour which automatically marks me someone you cannot count on.  The truth is, yes; there will be days when I cannot be physically present at a moment’s notice. There will be times I may have to work from home. There will be, most likely every day, a time in which I need to nap; there will be times when the fatigue is just too crushing and I cannot push through.  But this is the reality I face; this is life with chronic illness, and I have promised myself I will not sacrifice my health in order to abide to the conventional and outdated customs of the workforce. I am confident in the value people with disabilities in the workforce bring to the table. People with disabilities have the perseverance and determination to conquer anything. We are innovative thinkers, and invite others to see things from a different perspective.  We are considerate, nonjudgmental, and take pride in our ability to transform our weaknesses into strengths. We are hard workers; we fight for our lives every single day, and can apply this work ethic in a professional capacity. Therefore, “people with disabilities cannot work” is a blanket statement and a scapegoat for discrimination and stereotyping. Many of us can work, and want to work. As a society, we must see beyond the limitations disabilities present, and cultivate spaces that allow us to embrace our skills and strengths, allowing us to be who we are, and not our disabilities.