The Difference Between Existing and Living:
How to Rebuild Your Life After the Diagnosis of an Autoimmune Disease
Imagine waking up every morning to every single bone and muscle and nerve in your body screaming with agony, but you still have to get out of bed. Why?
Because nobody else knows your struggle. Nobody else can see your pain, so they think that you’re a liar. That you’re a fake. But really? Your body is slowly destroying itself and nobody knows because they can’t see it from the outside. You’re faced with constant pain and no relief. Every time you take a step, your joints creak and your muscles ache and the pressure of your foot hitting the floor radiates up your leg, into your spine, and causes every nerve in your body to light up with pain. Every time you have to eat, you force yourself to swallow bite after bite with the knowledge that after each gulp, your stomach will cramp and your meal will be ejected half-way up your throat. When you try to read or do schoolwork or concentrate on anything, your overwhelming fatigue will hit you like bricks and you will struggle to keep your eyes open, and you will struggle to form coherent thoughts and sentences. And when you try to talk to somebody about your debilitating condition? They’ll scoff. They’ll laugh. They’ll say, “it’s all in your head” or “it can’t be that bad” or “maybe you should do yoga.” Nobody you talk to will understand what you’re going through, but you will come to terms with that. You’ll get used to the constant tingling and burning and stabbing and overall discomfort. You’ll find ways to keep living your life. You’ll fight your invisible fight and, hell, you’ll do it even with no support. Why? Because you have no other choice. Because you have to prove to yourself that you are more than your illness. Because you have an autoimmune disease, and there’s no way that you’re going to let that stop you.
Going through life with an autoimmune disease is many things, but easy isn’t one of them. It’s a constant struggle. It’s a constant fight. It’s an internal war with no chance of ceasefire, and you’re the commander. But you don’t stand down your soldiers. You don’t wave your white flag. Every morning you dust off your dog tags, take your shit-shave-and-shower, and start again because there’s no other option. Autoimmune diseases, according to the American Autoimmune Related Diseases Association (or AARDA), happen when “immune cells make a mistake and attack the very cells they are meant to protect.” Because autoimmune diseases can’t be cured, people with autoimmune diseases are forced to accept their illnesses and find ways to move forward with their lives. I would know; I’ve been struggling with autoimmune diseases since I was ten years old. Part of moving forward and learning how to cope is finding the right doctor and treatment center for you to receive the help you, inevitably, will need. One hospital that does an exceptional job of treating rheumatology patients is the New York Presbyterian Hospital, and more specifically, those of Columbia and Weill Cornell. The rheumatology program at the New York Presbyterian Hospitals of Columbia and Cornell is regarded as one of the best because it is the largest rheumatology program in the country, has a connected system of different specialists for patients with multi-organ involvement, serves a wide variety of diverse patients, and is involved in multitudes of research studies and clinical trials. Because of their compassion, connectedness, and cutting-edge research, the rheumatology program at the New York Presbyterian Hospitals of Columbia and Cornell is an ideal destination for many sufferers of autoimmune diseases.
There are two individuals whom I idolize for their ability to talk about their illnesses and also for their impact on the world of rheumatology. One of these individuals is Meghan O’Rourke, a writer for The New Yorker and a woman who has learned to live with her autoimmune diseases. In her essay “What’s Wrong With Me?” (2013), O’Rourke identifies how her autoimmune diseases affect her life and also shows the lack of knowledge about autoimmune diseases in the medical community and in the general population. Meghan O’Rourke’s essay proves that autoimmune diseases have an enormous impact on a patient’s life. She writes that “To be sick in this way is to have the unpleasant feeling that you are impersonating yourself. When you’re sick, the act of living is more act than living. Healthy people, as you’re painfully aware, have the luxury of forgetting that our existence depends on a cascade of precise cellular interactions. Not you.” In every moment of every day, a person with an autoimmune disease knows that they are different. If they wanted to drink some water, for instance, they would have to consciously make decisions to move each finger and to grasp the cup, to raise the cup to their lips, and then force themself to swallow. A healthy person, on the other hand, would have to make only one decision: to drink some water. Each daily task becomes a challenge that they are forced to overcome. O’Rourke writes, “When I raised concerns about how I was doing, my doctor told me, ‘This may just be how it’s going to be. You may always feel like you’re eighty per cent.’” O’Rourke’s essay is a painstakingly true visual of what it is like to live as a sick individual.
O’Rourke’s essay also shows how there is a huge lack of knowledge about autoimmune diseases in the medical community and in the general population. She writes that “[a person with an autoimmune disease has] to be an advocate for [themself] in the face of medical ignorance, indifference, arrogance, and a lack of training. (A 2004 Johns Hopkins study found that nearly two-thirds of doctors surveyed felt inadequately trained in the care of the chronically ill.)” In fact, many people with autoimmune diseases have to go through multiple doctors before even being properly diagnosed. O’Rourke wrote that her “experience of feeling unwell for years before [getting] a diagnosis turned out to be typical. According to the AARDA, it takes an average of nearly five years (and five doctors) for a sufferer to be given a diagnosis.” Often times, people with autoimmune diseases are left advocating for themselves and doing their own research to present to doctors, and it’s not just doctors who are uninformed. In fact, the AARDA says that more than 80% of Americans can’t name even a single autoimmune disease. Being sick is not only a struggle in the physical sense, but many sufferers also have to fight just to get people to believe they are in pain.
The second individual who has been an inspiration to me is Christine Miserandino, a woman who blogs about her experience with autoimmune diseases. For many people with autoimmune diseases, just the task of getting out of bed in the morning is difficult, and many people struggle with being able to maintain a useful level of energy to get through the day. A common method that many autoimmune disease patients use to describe their energy level is the spoon theory, a theory that Christine Miserandino accidentally invented while out at dinner with her friend. Miserandino’s friend asked her what it was like to have Lupus, to be sick. Miserandino didn’t know what to say, so like any other person would do, she decided to explain her life using spoons. Miserandino wrote, “Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions.” Miserandino gave her friend a fistful of spoons (12 to be exact) and explained that each spoon symbolized an amount of energy. She told her friend that any task she did (getting out of bed, showering, putting on clothes, etc.) would “cost” her at least one spoon. Miserandino told her friend to rattle off a list of everything she does in one day, and for each task, she would take away a spoon. Before even leaving the house to go to work, Miserandino’s friend was left with only 6 spoons. Her friend asked her if she could get more spoons, but Miserandino said no. She said that she has “wanted more ‘spoons’ for years and [hasn’t] found a way yet to get more.” She also explained to her friend that when you are sick, you need “to choose the rest of [your] day wisely, since when your ‘spoons’ are gone, they are gone. Sometimes you can borrow against tomorrow’s ‘spoons,’ but just think how hard tomorrow will be with less ‘spoons’... a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on ‘spoons,’ because you never know when you truly will need them.” Miserandino’s spoon theory is a perfect example of one of the daily struggles that autoimmune disease patients face, but it’s only one of them.
Because I have been struggling with autoimmune diseases from a young age, I can concur with these women that going through life with an autoimmune disease is not a simple task. It is a daily fight between the part of you that wants to give up and stay in bed and complain and the part of you that strives to get up and work hard and make something of yourself. Every morning you have to decide if it’s worth it to push through yet another day just to end up crouched over in pain by that night. One of the main reasons that people with autoimmune disease can push through, one of the main reasons they can fight, is that they know that they aren’t alone. Maybe they are doubted and called names and discriminated against, but they aren’t alone. They know that there are other people like them, other people who are struggling. And, even though it may have taken a long time to find the right one, they probably have at least one doctor who cares about them and will help them fight.
One of the reasons the rheumatology program at the New York Presbyterian Hospitals of Columbia and Cornell is regarded at the best is that it is filled with those doctors who care about and will fight for their patients. Not only are they extremely invested in patient satisfaction, but the rheumatology program is also the largest rheumatology program in the country. According to the New York Presbyterian website, the rheumatology program at the Columbia and Cornell hospitals is made up of more than 46 rheumatologists (31 full-time and 3 pediatric), an eight-bed infusion unit that processes more than 5,200 treatments per year, is involved in more than 75 research studies and drug trials, and has more than 10,400 new patient visits per year and 32,550 follow up patient visits per year. The website states that the rheumatology program “provides state-of-the-art care to patients with the broad range of inflammatory and autoimmune diseases, pursues groundbreaking research at both the laboratory level and through clinical studies, and offers comprehensive training to medical residents and fellows.”
To confirm my findings, I was lucky enough to be able to talk to second-year rheumatology fellow Stacy Tanner who is pursuing her fellowship at the New York Presbyterian Hospital of Columbia. In a personal interview, I asked Tanner why she chose to do her rheumatology fellowship at the New York Presbyterian Hospital and she responded, “We have a very diverse patient population here in Washington Heights which means opportunities to see and treat a spectrum of autoimmune diseases in all their unique presentations. It is also an opportunity to serve a largely underserved, immigrant population.” When asked why she thought the New York Presbyterian Hospital would be best for rheumatology patients, Tanner told me that “Patients with autoimmune diseases often have multi-organ/system involvement and the environment at NYP allows them to see all their medical specialists through a connected system.” Talking to Stacy Tanner not only ratified my findings, but also provided an insight to life inside the rheumatology program at the New York Presbyterian Hospitals of Columbia and Cornell, thus proving that they really are a spectacular hospital with a spectacular rheumatology department.
Finding the right hospital or program to receive treatment is a big part of rebuilding your life after the diagnosis of an autoimmune disease, but receiving treatment is all it is because autoimmune diseases currently have no cure. You can find a great doctor in a great program at a great hospital, but the most they will be able to do for you is help you find ways to ease your pain and ways to be more comfortable in your daily life. One of the other major parts of living with an autoimmune disease is finding your own ways of coping with your illness that don’t involve medication or doctors. For me this included: finding out what foods make you feel like death and what foods don’t, finding easy exercises to take strain off of your joins (aquatherapy is gold), finding activities and hobbies that make you happy, finding a strong support system of people who care about and believe you so that you can talk when you need to, and most importantly, finding out how to listen to your body. Learning how to listen to your body is easier said than done, but it is one of those things that, once accomplished, will make your life one hundred times easier. Listening to your body is about being able to understand the differences between feeling good, feeling okay, feeling bad but being able to push through, and feeling so horrible that you need to stop what you’re doing and rest. It is about being able to provide your body with what it needs based on how it feels. Now, I can’t teach you how to be in tune with your body, but I can tell you this: the learning process is all trial and error, and it’s frustrating at first, but once you start picking up on your body’s subtle cues and figuring out what they mean, you will feel so much better that you won’t even be able to remember what it felt like before.
I guess what I’m trying to say is that no one thing is going to make you feel better. It takes a combination of different medications and doctors and lifestyle changes to be able to start living your life like you did before you were sick. If I didn’t live on the other side of the country, I would definitely be a patient at the New York Presbyterian Hospital because they are excellent, and I think that’s pretty clear, but that’s not the point. If you can’t go to New York to be treated, your life isn’t over. There are other doctors who will fight for you and listen to you, and you can alter your lifestyle from anywhere in the world. The New York Presbyterian Hospital is the best. They are. They’re the best. But what’s better than the best hospital? A person who is determined to get back on their feet. A person who is willing to do whatever it takes to rebuild their life. A person who won’t stop searching until they find ways to cope. A person like you. So, I’ll say it again: going through life with an autoimmune disease is many things, but easy isn’t one of them. It’s a constant struggle. It’s a constant fight. It’s an internal war with no chance of ceasefire, and you’re the commander. But you don’t stand down your soldiers. You don’t wave your white flag. Every morning you dust off your dog tags, take your shit-shave-and-shower, and start again because there’s no other option. Because you will overcome.
Going through life with an autoimmune disease is many things, but easy isn’t one of them. It’s a constant struggle. It’s a constant fight. It’s an internal war with no chance of ceasefire, and you’re the commander. But you don’t stand down your soldiers. You don’t wave your white flag. Every morning you dust off your dog tags, take your shit-shave-and-shower, and start again because there’s no other option. Autoimmune diseases, according to the American Autoimmune Related Diseases Association (or AARDA), happen when “immune cells make a mistake and attack the very cells they are meant to protect.” Because autoimmune diseases can’t be cured, people with autoimmune diseases are forced to accept their illnesses and find ways to move forward with their lives. I would know; I’ve been struggling with autoimmune diseases since I was ten years old. Part of moving forward and learning how to cope is finding the right doctor and treatment center for you to receive the help you, inevitably, will need. One hospital that does an exceptional job of treating rheumatology patients is the New York Presbyterian Hospital, and more specifically, those of Columbia and Weill Cornell. The rheumatology program at the New York Presbyterian Hospitals of Columbia and Cornell is regarded as one of the best because it is the largest rheumatology program in the country, has a connected system of different specialists for patients with multi-organ involvement, serves a wide variety of diverse patients, and is involved in multitudes of research studies and clinical trials. Because of their compassion, connectedness, and cutting-edge research, the rheumatology program at the New York Presbyterian Hospitals of Columbia and Cornell is an ideal destination for many sufferers of autoimmune diseases.
There are two individuals whom I idolize for their ability to talk about their illnesses and also for their impact on the world of rheumatology. One of these individuals is Meghan O’Rourke, a writer for The New Yorker and a woman who has learned to live with her autoimmune diseases. In her essay “What’s Wrong With Me?” (2013), O’Rourke identifies how her autoimmune diseases affect her life and also shows the lack of knowledge about autoimmune diseases in the medical community and in the general population. Meghan O’Rourke’s essay proves that autoimmune diseases have an enormous impact on a patient’s life. She writes that “To be sick in this way is to have the unpleasant feeling that you are impersonating yourself. When you’re sick, the act of living is more act than living. Healthy people, as you’re painfully aware, have the luxury of forgetting that our existence depends on a cascade of precise cellular interactions. Not you.” In every moment of every day, a person with an autoimmune disease knows that they are different. If they wanted to drink some water, for instance, they would have to consciously make decisions to move each finger and to grasp the cup, to raise the cup to their lips, and then force themself to swallow. A healthy person, on the other hand, would have to make only one decision: to drink some water. Each daily task becomes a challenge that they are forced to overcome. O’Rourke writes, “When I raised concerns about how I was doing, my doctor told me, ‘This may just be how it’s going to be. You may always feel like you’re eighty per cent.’” O’Rourke’s essay is a painstakingly true visual of what it is like to live as a sick individual.
O’Rourke’s essay also shows how there is a huge lack of knowledge about autoimmune diseases in the medical community and in the general population. She writes that “[a person with an autoimmune disease has] to be an advocate for [themself] in the face of medical ignorance, indifference, arrogance, and a lack of training. (A 2004 Johns Hopkins study found that nearly two-thirds of doctors surveyed felt inadequately trained in the care of the chronically ill.)” In fact, many people with autoimmune diseases have to go through multiple doctors before even being properly diagnosed. O’Rourke wrote that her “experience of feeling unwell for years before [getting] a diagnosis turned out to be typical. According to the AARDA, it takes an average of nearly five years (and five doctors) for a sufferer to be given a diagnosis.” Often times, people with autoimmune diseases are left advocating for themselves and doing their own research to present to doctors, and it’s not just doctors who are uninformed. In fact, the AARDA says that more than 80% of Americans can’t name even a single autoimmune disease. Being sick is not only a struggle in the physical sense, but many sufferers also have to fight just to get people to believe they are in pain.
The second individual who has been an inspiration to me is Christine Miserandino, a woman who blogs about her experience with autoimmune diseases. For many people with autoimmune diseases, just the task of getting out of bed in the morning is difficult, and many people struggle with being able to maintain a useful level of energy to get through the day. A common method that many autoimmune disease patients use to describe their energy level is the spoon theory, a theory that Christine Miserandino accidentally invented while out at dinner with her friend. Miserandino’s friend asked her what it was like to have Lupus, to be sick. Miserandino didn’t know what to say, so like any other person would do, she decided to explain her life using spoons. Miserandino wrote, “Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions.” Miserandino gave her friend a fistful of spoons (12 to be exact) and explained that each spoon symbolized an amount of energy. She told her friend that any task she did (getting out of bed, showering, putting on clothes, etc.) would “cost” her at least one spoon. Miserandino told her friend to rattle off a list of everything she does in one day, and for each task, she would take away a spoon. Before even leaving the house to go to work, Miserandino’s friend was left with only 6 spoons. Her friend asked her if she could get more spoons, but Miserandino said no. She said that she has “wanted more ‘spoons’ for years and [hasn’t] found a way yet to get more.” She also explained to her friend that when you are sick, you need “to choose the rest of [your] day wisely, since when your ‘spoons’ are gone, they are gone. Sometimes you can borrow against tomorrow’s ‘spoons,’ but just think how hard tomorrow will be with less ‘spoons’... a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on ‘spoons,’ because you never know when you truly will need them.” Miserandino’s spoon theory is a perfect example of one of the daily struggles that autoimmune disease patients face, but it’s only one of them.
Because I have been struggling with autoimmune diseases from a young age, I can concur with these women that going through life with an autoimmune disease is not a simple task. It is a daily fight between the part of you that wants to give up and stay in bed and complain and the part of you that strives to get up and work hard and make something of yourself. Every morning you have to decide if it’s worth it to push through yet another day just to end up crouched over in pain by that night. One of the main reasons that people with autoimmune disease can push through, one of the main reasons they can fight, is that they know that they aren’t alone. Maybe they are doubted and called names and discriminated against, but they aren’t alone. They know that there are other people like them, other people who are struggling. And, even though it may have taken a long time to find the right one, they probably have at least one doctor who cares about them and will help them fight.
One of the reasons the rheumatology program at the New York Presbyterian Hospitals of Columbia and Cornell is regarded at the best is that it is filled with those doctors who care about and will fight for their patients. Not only are they extremely invested in patient satisfaction, but the rheumatology program is also the largest rheumatology program in the country. According to the New York Presbyterian website, the rheumatology program at the Columbia and Cornell hospitals is made up of more than 46 rheumatologists (31 full-time and 3 pediatric), an eight-bed infusion unit that processes more than 5,200 treatments per year, is involved in more than 75 research studies and drug trials, and has more than 10,400 new patient visits per year and 32,550 follow up patient visits per year. The website states that the rheumatology program “provides state-of-the-art care to patients with the broad range of inflammatory and autoimmune diseases, pursues groundbreaking research at both the laboratory level and through clinical studies, and offers comprehensive training to medical residents and fellows.”
To confirm my findings, I was lucky enough to be able to talk to second-year rheumatology fellow Stacy Tanner who is pursuing her fellowship at the New York Presbyterian Hospital of Columbia. In a personal interview, I asked Tanner why she chose to do her rheumatology fellowship at the New York Presbyterian Hospital and she responded, “We have a very diverse patient population here in Washington Heights which means opportunities to see and treat a spectrum of autoimmune diseases in all their unique presentations. It is also an opportunity to serve a largely underserved, immigrant population.” When asked why she thought the New York Presbyterian Hospital would be best for rheumatology patients, Tanner told me that “Patients with autoimmune diseases often have multi-organ/system involvement and the environment at NYP allows them to see all their medical specialists through a connected system.” Talking to Stacy Tanner not only ratified my findings, but also provided an insight to life inside the rheumatology program at the New York Presbyterian Hospitals of Columbia and Cornell, thus proving that they really are a spectacular hospital with a spectacular rheumatology department.
Finding the right hospital or program to receive treatment is a big part of rebuilding your life after the diagnosis of an autoimmune disease, but receiving treatment is all it is because autoimmune diseases currently have no cure. You can find a great doctor in a great program at a great hospital, but the most they will be able to do for you is help you find ways to ease your pain and ways to be more comfortable in your daily life. One of the other major parts of living with an autoimmune disease is finding your own ways of coping with your illness that don’t involve medication or doctors. For me this included: finding out what foods make you feel like death and what foods don’t, finding easy exercises to take strain off of your joins (aquatherapy is gold), finding activities and hobbies that make you happy, finding a strong support system of people who care about and believe you so that you can talk when you need to, and most importantly, finding out how to listen to your body. Learning how to listen to your body is easier said than done, but it is one of those things that, once accomplished, will make your life one hundred times easier. Listening to your body is about being able to understand the differences between feeling good, feeling okay, feeling bad but being able to push through, and feeling so horrible that you need to stop what you’re doing and rest. It is about being able to provide your body with what it needs based on how it feels. Now, I can’t teach you how to be in tune with your body, but I can tell you this: the learning process is all trial and error, and it’s frustrating at first, but once you start picking up on your body’s subtle cues and figuring out what they mean, you will feel so much better that you won’t even be able to remember what it felt like before.
I guess what I’m trying to say is that no one thing is going to make you feel better. It takes a combination of different medications and doctors and lifestyle changes to be able to start living your life like you did before you were sick. If I didn’t live on the other side of the country, I would definitely be a patient at the New York Presbyterian Hospital because they are excellent, and I think that’s pretty clear, but that’s not the point. If you can’t go to New York to be treated, your life isn’t over. There are other doctors who will fight for you and listen to you, and you can alter your lifestyle from anywhere in the world. The New York Presbyterian Hospital is the best. They are. They’re the best. But what’s better than the best hospital? A person who is determined to get back on their feet. A person who is willing to do whatever it takes to rebuild their life. A person who won’t stop searching until they find ways to cope. A person like you. So, I’ll say it again: going through life with an autoimmune disease is many things, but easy isn’t one of them. It’s a constant struggle. It’s a constant fight. It’s an internal war with no chance of ceasefire, and you’re the commander. But you don’t stand down your soldiers. You don’t wave your white flag. Every morning you dust off your dog tags, take your shit-shave-and-shower, and start again because there’s no other option. Because you will overcome.