Kristen Hutchison

@kristenhutchison | contributor
I am a young woman who has lived with the invisibility of ulcerative colitis for over a decade. Every person has a story - not always a glamorous one.

'Come as You Are' Is a Movie About More Than Just Disability

I’ve never understood the gravity of disability representation until now. Seeing elements of my own existence was monumental for me. The first time I saw the film “Come as You Are,” I sobbed and needed a lot of tissues to wipe my tears. In “Come as You Are,” each character is deeply unique and multi-dimensional. In a feature-length film, how often do you see a group of adult friends, each living with disabilities that may appear similar to the viewer, but who are deeply different below their outward appearance? To my knowledge, rarely. Have you ever seen a main character of a film who is a quadriplegic, but the plotline isn’t only about that, but also his desire to lose his virginity? I haven’t. I’ve never seen a film where the complexities of disability are detailed in a character, giving that character multiple dimensions — not just the one of being a disabled person. I first noticed this in the incorporation of the main character’s family members. A prominent theme in the film is how family members go through their own journeys, and how disability shapes the relationship between parents and their children with disabilities. When I watched Scotty’s mom interact with him, I felt like I was given a glimpse into their complex dynamic. I could feel her fear when he left for the Canadian road trip, and she sat at the computer on his room and watched his rap videos. This scene gave me a better understanding of how my parents must’ve felt when I was medically disabled due to my ulcerative colitis. Scotty’s mom watched his rap videos intently, as if to learn about another side of him. The camera focused on her facial expressions and the pure empathy radiating from her eyes. She saw a side that Scotty didn’t show to anyone except those who listened and watched his artistic expression of his struggles. His words opened a door for her to peer in and see his pain. This scene made me realize that even though she was his caregiver, she would never really know her son and what he goes through on a daily basis. This is why Scotty didn’t tell her when he left on the road trip; he knew she would never let him go. In another pivotal scene about the character’s family members, Moe, a man with a visual impairment, was sitting in the passenger side of Sam’s van. He told her that he’s never gone on a trip without his mom. He’s a grown adult. I wondered where his mom was in the film; we were never introduced to her. But this also illustrated to me that there are varying levels of involvement with parents or caregivers, particularly when their adult child lives with a disability or physical limitation. I also understood Moe in this scene. What resonated the most to me was the feeling of having your physical body limit you to such a level that you crave that freedom to just get away. As a person with a disability myself, I can never actually “get away” from my body. But when I saw these characters working so hard to take back some freedom for their road trip, it was inspiring. There was a sense of childhood wonder in the characters as they planned what seemed like an “adventure.” The term “field trip” came up multiple times and was connected to a “vacation.” Matt argued that they were not on a “field trip.” His anger was palpable. The characters were adults, but adults with limitations that had been placed on them, so the adventure couldn’t be accomplished without a lot of help from able-bodied people — a concept I know very well. The concept of having an “able body” is hard for me to define here, mainly because Sam initially appeared to be “healthy” and without a disability. But I’ve never connected so deeply with a character as when she was taking off Scotty’s shoes before bed at the hotel and suddenly stopped responding to the other characters in the room. She then passed out and fell to the floor from her knees. After the ambulance came and brought her to the hospital, it was learned that she lives with type 1 diabetes. She also had a disability, just an invisible one. Like me. “I know what you’re going through.” This statement was said at multiple points in the film, illustrating the vast array of consequences it can have on an individual. One example was when Matt said he knew how Scotty felt. Both men were wheelchair users. He said this in the elevator, a closed space with nowhere for Scotty to hide from the implications. Scotty was livid. He yelled at Matt, explaining that Matt will never know what he goes through and to never say that again. It is all too common to put labels on others, to categorize individuals so you can better understand them. This scene showed me that even when people appear to be similar on the outside, they are more than likely experiencing very different realities. Never assume you know what someone else is going through. Until you’ve lived in their body, you will never know. “My cousin’s brother in law has Down syndrome, so… I know.” The well-meaning cop Scotty, Moe and Matt meet on the side of the road had no idea. He didn’t know what their individual lives consisted of each day. But the assumption of “getting it” is a central theme of the film. I will never be able to understand another person’s reality and the world will never understand mine. The saying goes, “walk a mile in my shoes,” but even then, your experiences are your own. I didn’t expect this. I expected for others to be able to understand. I mistakenly assumed my chronic illness would be easy for others to “get.” Once the characters made it to Canada, in hopes of visiting a brothel to lose their virginity, their parents caught onto their plan. They met up with the men and Sam at their hotel. I began to weep when Scotty’s mom and Matt’s parents found them. I felt sadness because these adult men had once again been controlled by authority. They were reminded that their limitations did, in fact, exist and they could not outrun them. Even in a different country. Another theme of the film was to introduce the concept of what is it to be “normal.” Scotty wasn’t a cliche or inspiration, he was a regular guy who enjoyed watching wheelchair baseball and just wanted to get laid. Human needs and urges develop each character into more than what the viewer sees — they are so much more than their disabilities. The final way this film resonated with me was through the theme of how similar we all are as people. It is human nature to want to relate to others. We need to connect with others, even when it’s difficult — for example, when Scotty had a hard time relating to his mother, or relating to Matt, who was in a wheelchair as well, but due to a degenerative condition very different from Scotty’s. Moe and Sam created a relationship, regardless of his visual impairments, and her diabetes, and found love. They could relate to each other even through their differences. This concept of connection and understanding relates to the power of presence and compassion. “Come as You Are” illustrated the immense power of simply listening and genuinely hearing one another.

'Come as You Are' Is a Movie About More Than Just Disability

I’ve never understood the gravity of disability representation until now. Seeing elements of my own existence was monumental for me. The first time I saw the film “Come as You Are,” I sobbed and needed a lot of tissues to wipe my tears. In “Come as You Are,” each character is deeply unique and multi-dimensional. In a feature-length film, how often do you see a group of adult friends, each living with disabilities that may appear similar to the viewer, but who are deeply different below their outward appearance? To my knowledge, rarely. Have you ever seen a main character of a film who is a quadriplegic, but the plotline isn’t only about that, but also his desire to lose his virginity? I haven’t. I’ve never seen a film where the complexities of disability are detailed in a character, giving that character multiple dimensions — not just the one of being a disabled person. I first noticed this in the incorporation of the main character’s family members. A prominent theme in the film is how family members go through their own journeys, and how disability shapes the relationship between parents and their children with disabilities. When I watched Scotty’s mom interact with him, I felt like I was given a glimpse into their complex dynamic. I could feel her fear when he left for the Canadian road trip, and she sat at the computer on his room and watched his rap videos. This scene gave me a better understanding of how my parents must’ve felt when I was medically disabled due to my ulcerative colitis. Scotty’s mom watched his rap videos intently, as if to learn about another side of him. The camera focused on her facial expressions and the pure empathy radiating from her eyes. She saw a side that Scotty didn’t show to anyone except those who listened and watched his artistic expression of his struggles. His words opened a door for her to peer in and see his pain. This scene made me realize that even though she was his caregiver, she would never really know her son and what he goes through on a daily basis. This is why Scotty didn’t tell her when he left on the road trip; he knew she would never let him go. In another pivotal scene about the character’s family members, Moe, a man with a visual impairment, was sitting in the passenger side of Sam’s van. He told her that he’s never gone on a trip without his mom. He’s a grown adult. I wondered where his mom was in the film; we were never introduced to her. But this also illustrated to me that there are varying levels of involvement with parents or caregivers, particularly when their adult child lives with a disability or physical limitation. I also understood Moe in this scene. What resonated the most to me was the feeling of having your physical body limit you to such a level that you crave that freedom to just get away. As a person with a disability myself, I can never actually “get away” from my body. But when I saw these characters working so hard to take back some freedom for their road trip, it was inspiring. There was a sense of childhood wonder in the characters as they planned what seemed like an “adventure.” The term “field trip” came up multiple times and was connected to a “vacation.” Matt argued that they were not on a “field trip.” His anger was palpable. The characters were adults, but adults with limitations that had been placed on them, so the adventure couldn’t be accomplished without a lot of help from able-bodied people — a concept I know very well. The concept of having an “able body” is hard for me to define here, mainly because Sam initially appeared to be “healthy” and without a disability. But I’ve never connected so deeply with a character as when she was taking off Scotty’s shoes before bed at the hotel and suddenly stopped responding to the other characters in the room. She then passed out and fell to the floor from her knees. After the ambulance came and brought her to the hospital, it was learned that she lives with type 1 diabetes. She also had a disability, just an invisible one. Like me. “I know what you’re going through.” This statement was said at multiple points in the film, illustrating the vast array of consequences it can have on an individual. One example was when Matt said he knew how Scotty felt. Both men were wheelchair users. He said this in the elevator, a closed space with nowhere for Scotty to hide from the implications. Scotty was livid. He yelled at Matt, explaining that Matt will never know what he goes through and to never say that again. It is all too common to put labels on others, to categorize individuals so you can better understand them. This scene showed me that even when people appear to be similar on the outside, they are more than likely experiencing very different realities. Never assume you know what someone else is going through. Until you’ve lived in their body, you will never know. “My cousin’s brother in law has Down syndrome, so… I know.” The well-meaning cop Scotty, Moe and Matt meet on the side of the road had no idea. He didn’t know what their individual lives consisted of each day. But the assumption of “getting it” is a central theme of the film. I will never be able to understand another person’s reality and the world will never understand mine. The saying goes, “walk a mile in my shoes,” but even then, your experiences are your own. I didn’t expect this. I expected for others to be able to understand. I mistakenly assumed my chronic illness would be easy for others to “get.” Once the characters made it to Canada, in hopes of visiting a brothel to lose their virginity, their parents caught onto their plan. They met up with the men and Sam at their hotel. I began to weep when Scotty’s mom and Matt’s parents found them. I felt sadness because these adult men had once again been controlled by authority. They were reminded that their limitations did, in fact, exist and they could not outrun them. Even in a different country. Another theme of the film was to introduce the concept of what is it to be “normal.” Scotty wasn’t a cliche or inspiration, he was a regular guy who enjoyed watching wheelchair baseball and just wanted to get laid. Human needs and urges develop each character into more than what the viewer sees — they are so much more than their disabilities. The final way this film resonated with me was through the theme of how similar we all are as people. It is human nature to want to relate to others. We need to connect with others, even when it’s difficult — for example, when Scotty had a hard time relating to his mother, or relating to Matt, who was in a wheelchair as well, but due to a degenerative condition very different from Scotty’s. Moe and Sam created a relationship, regardless of his visual impairments, and her diabetes, and found love. They could relate to each other even through their differences. This concept of connection and understanding relates to the power of presence and compassion. “Come as You Are” illustrated the immense power of simply listening and genuinely hearing one another.

Mary Fashik

Please Accommodate Workers All the Time, Not Just for Coronavirus

Coronavirus (COVID-19) is a new viral strain in the coronavirus family, a group of illnesses ranging from the common cold to more serious illnesses like Severe Acute Respiratory Syndrome (SARS-CoV), spreading around the world. As the virus’s presence continues to grow, society has started to rethink its daily activities, such as going to work and/or school. Employers have started making accommodations like allowing people to work from home and encouraging virtual meetings over in-person ones. Some universities now have virtual classes available. While these precautionary measures can help prevent the spread of coronavirus (not to mention save lives of people in  populations more vulnerable to sickness !), I can’t help but wish these kinds of accommodations would be available to the disability community all the time, not just in times of crisis. For years, our requests to take classes virtually when unable to attend in person due to health issues have been denied. Attendance policies are archaic and inherently ableist . Disabled and chronically ill students are forced to drop out because of schools’ unwillingness to accommodate them . I’ve grown tired of the classic excuse of: “having to accommodate one means having to accommodate them all.” The same applies to employers. Suddenly, because of the coronavirus, virtual meetings and working from home are both attainable. In fact, they are preferred. Why is that? One word: fear. Fear has taken over our lives. No one wants to go out in public or be part of a large crowd. It is safer for everyone. Seemingly healthy people are now experiencing what those of us who are disabled and/or chronically ill go through on a daily basis. So why are all these accommodations now magically OK? Because it affects the masses. The disabled and chronically ill are not seen as important members of society. They are seen as burdens and inconveniences , their lives thought of as expendable. If you feel that statement is an exaggeration, just take a look at social media. The amount of comments being circulated that only the elderly and chronically ill will die from this virus is absolutely disgusting. Yet, the same people are attending virtual meetings out of fear of getting sick. Isn’t it heartbreaking that when some accommodation can be easily made for someone who is disabled or chronically ill, it is seen as a hassle? Now that something life-threatening is affecting those who are not disabled or ill, employers and schools are bending over backward to make those accommodations. This whole experience exposes the ableism that runs rampant throughout society. The response to coronavirus proves that employers can make accommodations, they just don’t want to. The panic over the virus may diminish. The virus itself may be contained. But the ableism that has come to light during all of this won’t vanish. It will simply be swept under the rug just like it has been in the past. Concerned about coronavirus? Stay safe using the tips from these articles: Which Face Masks Prevent Against Coronavirus? How to Make Your Own Hand Sanitizer 8 Soaps You Can Use to Help Prevent the Spread of Illness Coronavirus and Chronic Illness: What You Need to Know 10 Face Masks People With Chronic Illness Recommend

'Come as You Are' Is a Movie About More Than Just Disability

I’ve never understood the gravity of disability representation until now. Seeing elements of my own existence was monumental for me. The first time I saw the film “Come as You Are,” I sobbed and needed a lot of tissues to wipe my tears. In “Come as You Are,” each character is deeply unique and multi-dimensional. In a feature-length film, how often do you see a group of adult friends, each living with disabilities that may appear similar to the viewer, but who are deeply different below their outward appearance? To my knowledge, rarely. Have you ever seen a main character of a film who is a quadriplegic, but the plotline isn’t only about that, but also his desire to lose his virginity? I haven’t. I’ve never seen a film where the complexities of disability are detailed in a character, giving that character multiple dimensions — not just the one of being a disabled person. I first noticed this in the incorporation of the main character’s family members. A prominent theme in the film is how family members go through their own journeys, and how disability shapes the relationship between parents and their children with disabilities. When I watched Scotty’s mom interact with him, I felt like I was given a glimpse into their complex dynamic. I could feel her fear when he left for the Canadian road trip, and she sat at the computer on his room and watched his rap videos. This scene gave me a better understanding of how my parents must’ve felt when I was medically disabled due to my ulcerative colitis. Scotty’s mom watched his rap videos intently, as if to learn about another side of him. The camera focused on her facial expressions and the pure empathy radiating from her eyes. She saw a side that Scotty didn’t show to anyone except those who listened and watched his artistic expression of his struggles. His words opened a door for her to peer in and see his pain. This scene made me realize that even though she was his caregiver, she would never really know her son and what he goes through on a daily basis. This is why Scotty didn’t tell her when he left on the road trip; he knew she would never let him go. In another pivotal scene about the character’s family members, Moe, a man with a visual impairment, was sitting in the passenger side of Sam’s van. He told her that he’s never gone on a trip without his mom. He’s a grown adult. I wondered where his mom was in the film; we were never introduced to her. But this also illustrated to me that there are varying levels of involvement with parents or caregivers, particularly when their adult child lives with a disability or physical limitation. I also understood Moe in this scene. What resonated the most to me was the feeling of having your physical body limit you to such a level that you crave that freedom to just get away. As a person with a disability myself, I can never actually “get away” from my body. But when I saw these characters working so hard to take back some freedom for their road trip, it was inspiring. There was a sense of childhood wonder in the characters as they planned what seemed like an “adventure.” The term “field trip” came up multiple times and was connected to a “vacation.” Matt argued that they were not on a “field trip.” His anger was palpable. The characters were adults, but adults with limitations that had been placed on them, so the adventure couldn’t be accomplished without a lot of help from able-bodied people — a concept I know very well. The concept of having an “able body” is hard for me to define here, mainly because Sam initially appeared to be “healthy” and without a disability. But I’ve never connected so deeply with a character as when she was taking off Scotty’s shoes before bed at the hotel and suddenly stopped responding to the other characters in the room. She then passed out and fell to the floor from her knees. After the ambulance came and brought her to the hospital, it was learned that she lives with type 1 diabetes. She also had a disability, just an invisible one. Like me. “I know what you’re going through.” This statement was said at multiple points in the film, illustrating the vast array of consequences it can have on an individual. One example was when Matt said he knew how Scotty felt. Both men were wheelchair users. He said this in the elevator, a closed space with nowhere for Scotty to hide from the implications. Scotty was livid. He yelled at Matt, explaining that Matt will never know what he goes through and to never say that again. It is all too common to put labels on others, to categorize individuals so you can better understand them. This scene showed me that even when people appear to be similar on the outside, they are more than likely experiencing very different realities. Never assume you know what someone else is going through. Until you’ve lived in their body, you will never know. “My cousin’s brother in law has Down syndrome, so… I know.” The well-meaning cop Scotty, Moe and Matt meet on the side of the road had no idea. He didn’t know what their individual lives consisted of each day. But the assumption of “getting it” is a central theme of the film. I will never be able to understand another person’s reality and the world will never understand mine. The saying goes, “walk a mile in my shoes,” but even then, your experiences are your own. I didn’t expect this. I expected for others to be able to understand. I mistakenly assumed my chronic illness would be easy for others to “get.” Once the characters made it to Canada, in hopes of visiting a brothel to lose their virginity, their parents caught onto their plan. They met up with the men and Sam at their hotel. I began to weep when Scotty’s mom and Matt’s parents found them. I felt sadness because these adult men had once again been controlled by authority. They were reminded that their limitations did, in fact, exist and they could not outrun them. Even in a different country. Another theme of the film was to introduce the concept of what is it to be “normal.” Scotty wasn’t a cliche or inspiration, he was a regular guy who enjoyed watching wheelchair baseball and just wanted to get laid. Human needs and urges develop each character into more than what the viewer sees — they are so much more than their disabilities. The final way this film resonated with me was through the theme of how similar we all are as people. It is human nature to want to relate to others. We need to connect with others, even when it’s difficult — for example, when Scotty had a hard time relating to his mother, or relating to Matt, who was in a wheelchair as well, but due to a degenerative condition very different from Scotty’s. Moe and Sam created a relationship, regardless of his visual impairments, and her diabetes, and found love. They could relate to each other even through their differences. This concept of connection and understanding relates to the power of presence and compassion. “Come as You Are” illustrated the immense power of simply listening and genuinely hearing one another.

Hailey Hudson

Disappointed You Can't Make Plans Due to COVID-19?

Last week, the coronavirus — the new viral strain in the coronavirus family that affects the lungs and respiratory system — was officially declared a pandemic and a national emergency, with many Americans following public health recommendations to practice social distancing. If you’re like many others in the U.S., by now you’re sequestered away in your home with a closet full of toilet paper and hand sanitizer. In most cases, your classes and/or job have been moved online, and your social plans for the foreseeable future have been put on hold. Sound familiar? It does to me, too — but for different reasons. In my case, daily life hasn’t really changed. The Coronavirus is new to all of us, but many chronically ill people have been living this way for years. As someone who lives with multiple chronic conditions, I personally know a thing or two about situations being out of my control for medical reasons. Let me explain. When I see students posting how devastated they are that the rest of their semester was canceled or moved online, I can relate. I toured several beautiful college campuses in high school, got accepted to every school I applied to, and then ended up unable to attend any of them because of my health. When I see athletes talking about their season cancellation and how everything they’d worked so hard for was ripped away, I can relate. I was a highly competitive softball player until chronic illness forced me to stop before reaching the goals I’d set. When I see people complaining about the trips they’ve had to cancel, I can relate. I’ve canceled simple two-day road trips and exotic overseas flights alike because I was stuck in bed with fatigue and pain. When I see people saying how uncertain and worried they feel because they can’t make plans for the future, I can relate. I’ve been struggling to make plans for the past year, taking things one day at a time as I’m in survival mode because of my debilitating GI symptoms. When I see people expressing their frustration about trying to get work done from home or their worry they’ll lose their job and their salary, I can relate. I work from home because I’m not well enough to hold down even a part-time job outside the house. There are periods of time where I’m also not well enough to do my work from home as much as usual and my income goes down while my medical bills go up. When I see people talking about how they’re borderline depressed from sitting at home by themselves, I can relate. When I’m in a flare-up, it’s common for me to not step outside the door of my 700-square foot apartment for seven to 10 days, and the isolation absolutely does a number on your mental health. Don’t get me wrong: I’m not complaining. I’m very fortunate to not be homebound, except for the occasional week or two during bad flares. I’m able to do a lot of the things I want to do by pushing through and building in recovery time later. I lead a fulfilling life that, during seasons when I’m functioning, includes dance, travel and time with friends. But these things are still physically difficult. And over the last several years, there have been many things I can’t do — whether I know ahead of time I can’t handle something physically, or I think I can do it but wake up feeling bad the day of — and I know there will be many more. And I feel grief about everything I’m missing out on. I’m not invalidating the pain that any healthy people feel from canceled or postponed events. Emotionally, this is a big deal — a “pandemic of human disappointment,” as Nadia Bolz-Weber said on Twitter — and my heart truly hurts for everyone who is feeling scared, worried and upset about their changing plans. There’s a lot of grief involved here. I know that. My heart goes out to everyone dealing with these situations because I’ve felt that. Because for many chronically ill people, this is how they’re forced to live their daily life. And even when the COVID-19 quarantine is over, that’s not going to change. When the coronavirus pandemic ends, you’ll eventually go back to your normal life. You’ll go to work, go on vacation, and return to your normal social life. But for me, this isn’t a one-time thing. I will continue to grieve the things I can’t do because of chronic illness for the rest of my life. My “pandemic of disappointments” is chronic. We all experience things differently and no one’s pain is “worse” than someone else’s. But I want you to know that I can relate to your feelings of anger, sadness and grief during this season where things are out of your control. And maybe when it’s over, you’ll be able to relate to mine, too. Concerned about coronavirus? Stay safe using the tips from these articles: Which Face Masks Prevent Against Coronavirus? How Is the New Coronavirus Treated? How to Make Your Own Hand Sanitizer What You Should Know About Social Distancing During COVID-19 8 Soaps You Can Use to Help Prevent the Spread of Illness 10 Face Masks People With Chronic Illness Recommend

Community Voices

Please help my 19 year old boyfriend w/ UC

<p>Please help my 19 year old boyfriend w/ <a href="https://themighty.com/topic/ulcerative-colitis/?label=UC" class="tm-embed-link  tm-autolink health-map" data-id="5b23cec500553f33fe99edf0" data-name="UC" title="UC" target="_blank">UC</a></p>
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How I Related to This Important Memoir About Invisible Chronic Illness

I don’t want to be here. I’m in the emergency room. It is a Friday night at 6:00 in the middle of a dreary San Francisco neighborhood. I knew this was going to be a long night. I’ve been here before, a few months ago. For this visit, my ulcerative colitis (UC) flare is at its year-long anniversary. Unknowingly, I was only about halfway through it, but I would get out eventually. In this state, struggling was my best friend. My physical world was reduced to my bedroom and living room. Whatever I could do during the day would be dependent upon a force larger than my will and that force was my autoimmune illness. Who wants to be in the emergency room? Did I want to be in a state of such pain? Full of prednisone and suffering from the relentless, crushing pain at the base of my skull, the swelling of my abdomen, so sore that I cannot lay down on my stomach without pain? Not me. No thank you. What I didn’t expect was to have my struggles ignored. Having the emergency room be a place where I would be dismissed and essentially laughed away. After four hours of waiting in the lobby, sitting next to a man who created a fake identity for the receptionist, I was finally called back to get an exam. I was glad to be leaving the waiting room because the smell of bodies that hadn’t been bathed in weeks was getting thicker as more and more people arrived throughout the night. I followed the nurse as we walked from the lobby, underneath the piercing brightness of fluorescent lights that coated the ceilings of the seemingly endless hallway. The sharp lights illuminated each patient’s face, each one holding a different level of pain. I tried to keep my eyes forward, following the nurse’s path. She finally brought me into an exam room, where my roommate was an elderly man who I could smell from hallway. I don’t want to be here. There are at least a hundred places I’d rather be than feebly walking towards that hospital bed. After putting on a hospital gown, I waited another hour and tried to ignore the cries of my roommate for his spaghetti dinner. Finally, a resident working the night shift showed up at the end of my hospital bed. I was deeply relieved when he started speaking, although I couldn’t focus because of the pounding in my ears and the tenderness of my abdomen, feeling like it was about to burst open at any moment. But his words illustrated progress in my hospital stay. At the end of his answerless lecture, I asked a question. I was worried about another symptom I was having aside from the headaches that were taking my breath away. I asked about the integrity of my bowel walls, and if I was at risk for sepsis or toxic megacolon. He smirked at me. I didn’t understand that facial expression, after I had asked such a seriously worrisome question. He said, “Don’t believe everything you read on the internet.” It was in this moment that I knew, he didn’t really care about the thing called “bedside manner.” The entire concept of what it meant to be a doctor, to help and to comfort those who are in utter desperation for your help. Not to dismiss. I never got an answer to my question. So, I left the emergency room with some over-the-counter pain medication for my headaches and brought with me the shear pain that each one of my nerve fibers was continually radiating throughout my body. But hey, I shouldn’t believe everything I read on the internet. My symptoms were caused by what was a serious UC flare, with side effects from the prednisone. Debilitating, but not able to be fixed until my immune system quieted. The problem was, I looked to the internet for answers about my symptoms, especially when I wasn’t getting any from my doctors. In Abby Norman’s memoir, “Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain,” she explains how she was dismissed by numerous medical professionals, experiences I could relate to immediately. As a female patient with an invisible and chronic illness, it felt like we may have taken some of the same paths through those fluorescent-lined hallways of numerous hospitals — all in search of a diagnosis and for someone who would hear us. On the inside cover of her memoir, I find a powerful statement: “Women’s bodies have long been the battleground of a never-ending war for power, control, knowledge and truth.” Before reading “Ask Me About My Uterus,” I never realized how deeply this statement touched my medical journey. It reminded me of the memoir by Julie Rehmeyer as well — “Through the Shadowlands” — and her mysterious symptoms that no one could understand. She searched for answers on her own (through the internet) and in patients’ communities. Julie’s body was a battleground for knowledge. Abby’s body was a battleground in the same ways that mine has been — mainly for truth. Norman begins with a historical context of how women have long been dismissed and ignored as patients in the healthcare system of the U.S. In the present day, this is still occurring much more commonly that one would think, particularly with female patients who have invisible conditions such as my case with ulcerative colitis or with Norman’s case of endometriosis. She continues to explain her encounters with healthcare professionals and the apathy she received on so many different occasions. An example she uses near the beginning of her memoir is when she brought herself to the hospital, because she knew something was very wrong in her body. She says, “…the pain had exhausted me to the point of surrender.” This was a statement that I could’ve said myself, before I walked through the doors of that emergency room in San Francisco. There is a stubbornness that I feel in Norman’s words as she fights her battles alone. Sometimes she fights while lying on the floor, writhing in pain, because after the extent of dismissal by doctors, why would she want to go back and be given no answers once again? For patients with chronic illnesses, one of the most complicated burdens to bear is the difficulty by which we try to explain ourselves to others. Particularly, trying to find words that will adequately describe our pain. I’ve struggled with this since my diagnosis in 2009. There do not seem to be words in the English vocabulary that can precisely describe what it is like to have so much physical pain in your abdomen that it feels like there is a serrated bread knife running down you from your sternum to your pubic bone. So, I would rely on such analogies and images that people can “almost” understand. Norman explains her difficulty in trying to explain her pain when she was asked to rate her pain on a scale of 1 through 10. She asked, “What did the nurse think a 6 was? What would the doctor think that a 6 should be? Tears of frustration came. What was the point of this pain scale if they weren’t going to believe me anyway?” Her internal dialogue in this instance reminded me of another occasion in my medical journey of dismissals. I was in an infusion center. This is where your friend, spouse, grandmother, father, etc., go when they need chemotherapy. When an old man is getting a blood transfusion and needs to sit for hours upon end. Where many of us chronic illness patients go when we need IV therapies. It can be a particularly painful place to be; being surrounded by such pain and such vibrant reminders of your condition. I had IV treatments for about eight years before they stopped working. I was used to being in an infusion center every few weeks. Once, during a UC flare, as one of my medications was beginning to stop working, I was in a lot of physical pain. At the end of my infusion, the nurse asked me where I would rate my pain on that same old scale between 1 and 10. I said 7. The first number that came into my head, because relatively, to all the other days in that period of my life I was suffering, but I could put on a nice face and hide it well. She said, “We can’t let you go home unless you rate at a 4 or lower on the pain scale.” I looked at her and said, “Well, then I’m at a 4”. I wanted to go home. She wasn’t going to offer me anything for my pain anyway, so why even tell me this inanely arbitrary requirement? It was ridiculous. That pain scale is ridiculous, and just like Norman, I had to think of the reaction that the nurse would have when I responded to her question again. After I said a 4, she let me go home. But if I was honest with myself, I was most definitely at a 7. Norman’s memoir has inspired me in several ways. I’ve learned that speaking up is crucial in order to get any semblance of proper medical care, even though there will always be those few healthcare professionals who smirk at you in the emergency room and tell you not to believe everything you see on the internet. I learned that finding a community of other people who may be going through similar health-related situation as you is priceless. Reaching out to medical communities on Facebook and reading other patients’ novels has been a true gift to me. “Ask Me About My Uterus” stands as an illuminating lens into what it is like to have an invisible and chronic illness. Norman’s memoir meant so much to me and I hope that maybe one person, who may know what it feels like to be ignored by a medical professional, can relate. You may have been having a flare and the nurse asked what your pain was in that moment. Not understanding the concept of chronic pain, you may lie to get the treatment that you need. You may have such severe pain that no one understands your suffering, until you reach out to someone like me. Someone who is typing this essay, but feels the dull and intense ache in her finger joints. The arthritis that no one can see, but she knows is a sign of an ulcerative colitis flare. Something that can’t be wished away, but can be heard through the power of her story. Abby Norman’s story holds the power for other women like myself to speak up and say, I’m listening, and I will not dismiss your struggles solely because I do not care to try and understand them. Follow this journey on the author’s blog.

How I Related to This Important Memoir About Invisible Chronic Illness

I don’t want to be here. I’m in the emergency room. It is a Friday night at 6:00 in the middle of a dreary San Francisco neighborhood. I knew this was going to be a long night. I’ve been here before, a few months ago. For this visit, my ulcerative colitis (UC) flare is at its year-long anniversary. Unknowingly, I was only about halfway through it, but I would get out eventually. In this state, struggling was my best friend. My physical world was reduced to my bedroom and living room. Whatever I could do during the day would be dependent upon a force larger than my will and that force was my autoimmune illness. Who wants to be in the emergency room? Did I want to be in a state of such pain? Full of prednisone and suffering from the relentless, crushing pain at the base of my skull, the swelling of my abdomen, so sore that I cannot lay down on my stomach without pain? Not me. No thank you. What I didn’t expect was to have my struggles ignored. Having the emergency room be a place where I would be dismissed and essentially laughed away. After four hours of waiting in the lobby, sitting next to a man who created a fake identity for the receptionist, I was finally called back to get an exam. I was glad to be leaving the waiting room because the smell of bodies that hadn’t been bathed in weeks was getting thicker as more and more people arrived throughout the night. I followed the nurse as we walked from the lobby, underneath the piercing brightness of fluorescent lights that coated the ceilings of the seemingly endless hallway. The sharp lights illuminated each patient’s face, each one holding a different level of pain. I tried to keep my eyes forward, following the nurse’s path. She finally brought me into an exam room, where my roommate was an elderly man who I could smell from hallway. I don’t want to be here. There are at least a hundred places I’d rather be than feebly walking towards that hospital bed. After putting on a hospital gown, I waited another hour and tried to ignore the cries of my roommate for his spaghetti dinner. Finally, a resident working the night shift showed up at the end of my hospital bed. I was deeply relieved when he started speaking, although I couldn’t focus because of the pounding in my ears and the tenderness of my abdomen, feeling like it was about to burst open at any moment. But his words illustrated progress in my hospital stay. At the end of his answerless lecture, I asked a question. I was worried about another symptom I was having aside from the headaches that were taking my breath away. I asked about the integrity of my bowel walls, and if I was at risk for sepsis or toxic megacolon. He smirked at me. I didn’t understand that facial expression, after I had asked such a seriously worrisome question. He said, “Don’t believe everything you read on the internet.” It was in this moment that I knew, he didn’t really care about the thing called “bedside manner.” The entire concept of what it meant to be a doctor, to help and to comfort those who are in utter desperation for your help. Not to dismiss. I never got an answer to my question. So, I left the emergency room with some over-the-counter pain medication for my headaches and brought with me the shear pain that each one of my nerve fibers was continually radiating throughout my body. But hey, I shouldn’t believe everything I read on the internet. My symptoms were caused by what was a serious UC flare, with side effects from the prednisone. Debilitating, but not able to be fixed until my immune system quieted. The problem was, I looked to the internet for answers about my symptoms, especially when I wasn’t getting any from my doctors. In Abby Norman’s memoir, “Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain,” she explains how she was dismissed by numerous medical professionals, experiences I could relate to immediately. As a female patient with an invisible and chronic illness, it felt like we may have taken some of the same paths through those fluorescent-lined hallways of numerous hospitals — all in search of a diagnosis and for someone who would hear us. On the inside cover of her memoir, I find a powerful statement: “Women’s bodies have long been the battleground of a never-ending war for power, control, knowledge and truth.” Before reading “Ask Me About My Uterus,” I never realized how deeply this statement touched my medical journey. It reminded me of the memoir by Julie Rehmeyer as well — “Through the Shadowlands” — and her mysterious symptoms that no one could understand. She searched for answers on her own (through the internet) and in patients’ communities. Julie’s body was a battleground for knowledge. Abby’s body was a battleground in the same ways that mine has been — mainly for truth. Norman begins with a historical context of how women have long been dismissed and ignored as patients in the healthcare system of the U.S. In the present day, this is still occurring much more commonly that one would think, particularly with female patients who have invisible conditions such as my case with ulcerative colitis or with Norman’s case of endometriosis. She continues to explain her encounters with healthcare professionals and the apathy she received on so many different occasions. An example she uses near the beginning of her memoir is when she brought herself to the hospital, because she knew something was very wrong in her body. She says, “…the pain had exhausted me to the point of surrender.” This was a statement that I could’ve said myself, before I walked through the doors of that emergency room in San Francisco. There is a stubbornness that I feel in Norman’s words as she fights her battles alone. Sometimes she fights while lying on the floor, writhing in pain, because after the extent of dismissal by doctors, why would she want to go back and be given no answers once again? For patients with chronic illnesses, one of the most complicated burdens to bear is the difficulty by which we try to explain ourselves to others. Particularly, trying to find words that will adequately describe our pain. I’ve struggled with this since my diagnosis in 2009. There do not seem to be words in the English vocabulary that can precisely describe what it is like to have so much physical pain in your abdomen that it feels like there is a serrated bread knife running down you from your sternum to your pubic bone. So, I would rely on such analogies and images that people can “almost” understand. Norman explains her difficulty in trying to explain her pain when she was asked to rate her pain on a scale of 1 through 10. She asked, “What did the nurse think a 6 was? What would the doctor think that a 6 should be? Tears of frustration came. What was the point of this pain scale if they weren’t going to believe me anyway?” Her internal dialogue in this instance reminded me of another occasion in my medical journey of dismissals. I was in an infusion center. This is where your friend, spouse, grandmother, father, etc., go when they need chemotherapy. When an old man is getting a blood transfusion and needs to sit for hours upon end. Where many of us chronic illness patients go when we need IV therapies. It can be a particularly painful place to be; being surrounded by such pain and such vibrant reminders of your condition. I had IV treatments for about eight years before they stopped working. I was used to being in an infusion center every few weeks. Once, during a UC flare, as one of my medications was beginning to stop working, I was in a lot of physical pain. At the end of my infusion, the nurse asked me where I would rate my pain on that same old scale between 1 and 10. I said 7. The first number that came into my head, because relatively, to all the other days in that period of my life I was suffering, but I could put on a nice face and hide it well. She said, “We can’t let you go home unless you rate at a 4 or lower on the pain scale.” I looked at her and said, “Well, then I’m at a 4”. I wanted to go home. She wasn’t going to offer me anything for my pain anyway, so why even tell me this inanely arbitrary requirement? It was ridiculous. That pain scale is ridiculous, and just like Norman, I had to think of the reaction that the nurse would have when I responded to her question again. After I said a 4, she let me go home. But if I was honest with myself, I was most definitely at a 7. Norman’s memoir has inspired me in several ways. I’ve learned that speaking up is crucial in order to get any semblance of proper medical care, even though there will always be those few healthcare professionals who smirk at you in the emergency room and tell you not to believe everything you see on the internet. I learned that finding a community of other people who may be going through similar health-related situation as you is priceless. Reaching out to medical communities on Facebook and reading other patients’ novels has been a true gift to me. “Ask Me About My Uterus” stands as an illuminating lens into what it is like to have an invisible and chronic illness. Norman’s memoir meant so much to me and I hope that maybe one person, who may know what it feels like to be ignored by a medical professional, can relate. You may have been having a flare and the nurse asked what your pain was in that moment. Not understanding the concept of chronic pain, you may lie to get the treatment that you need. You may have such severe pain that no one understands your suffering, until you reach out to someone like me. Someone who is typing this essay, but feels the dull and intense ache in her finger joints. The arthritis that no one can see, but she knows is a sign of an ulcerative colitis flare. Something that can’t be wished away, but can be heard through the power of her story. Abby Norman’s story holds the power for other women like myself to speak up and say, I’m listening, and I will not dismiss your struggles solely because I do not care to try and understand them. Follow this journey on the author’s blog.

Community Voices

Propofol

I don’t know if I’m spelling it right. But I do know that this drug begs for words to explain its power.

Yesterday, I went under. I wasn’t in a place that was recognizable, I don’t think that I was even in a place. I was rolled into the procedure room by a woman who had ghosts drawn on her nails. Today is Halloween. She was nice. I knew what to expect, because I’ve been through these steps probably a hundred times. But I was in a different building today, a new one that I hadn’t yet experienced. She wheeled me towards the room where I would go under. There were automatic doors that both opened as once, like I was a queen coming being pushed into this bright, sterile hallway. I saw a nurse on my left who smiled at me like apple pie during a warm July day. I said “Hi” as I passed her. I looked right and saw the break room for people who administer the strongest drug I’ve ever experienced. They were chatting and relaxing. But I was tense. How do they not understand the power they weeld?

I wasn’t going under to take a nap. The anesthesiologist told me it would be like a nap. I would get a nice rest and then wake up, feeling like the procedure never happened and only a few minutes had passed.

It wasn’t like that.

I rolled down that hallway past more nurses to my left and into a room filled with the most equipment you’ve ever seen. Basically, a garage full of instruments and machines that could take you under to a space you’ve never consciously remembered before.

I was pushed to the left side and told to stand up and walk over to the other bed. I said “Oh, I’m transferring”. I thought it would happen on the bed that I was wheeled in on. The nurse with the ghosts on her nails escorted me to this new bed. I saw another nurse to my right, the most soft-spoken person I’ve ever heard. I was told to say my name and birthdate as they both looked at my wristband. Gotta make sure they have the right patient before they take them under.

I crawled onto this new bed and laid on my left side. My gown open in the back. I knew how they wanted me positioned. I was scared, so I started talking. I was telling the nurses that they are really nice. That they have a nice facility and fancy machines in the room. The soft-spoken one started asking me questions; why was she talking to me from the opposite corner of the room? She sounded like a mouse. That was confusing. I forgot about all the tools I needed to get attached to before they took me down. I was hooked up to an EEG, cold sensors placed on my chest and one below my sternum. My heart is important to pay attention to when I go to this new place. I was given oxygen through each nostril and wrapped the tubes below my ears. Oxygen feels like a metallic and cold air being forced deep inside of you. I thought, well it’s good to watch my lungs too. I needed that rush of oxygen coming into my body because soon, I wouldn’t remember how to breathe.

The nurse with the ghosts on her nail polish told me that I was now going to get some anesthesia. Okay, here comes my nice nap.

At the end of her sentence, I didn’t feel any different. I felt the cold air in my nostrils, the open gown exposing my backside and my ass, which was the money spot for these docs. I still heard that soft-spoken nurse talking and asking me questions, I was irritated because I could barely hear her, but I still answered her. After about ten seconds, I said, “I have a high tolerance”.

“I’m still awake, I’m still awake….” The nurse said, “It’s okay, I will get you there, but in a slow and gentle way.” So, I waited as I was tied into all these machines monitoring the force of life, I was still aware of. I could feel my heart beating through the fear. What if I couldn’t get enough meds, and I would feel everything. Someone touched my right butt cheek and I said, “I’m still awake”. I didn’t want to feel them going inside to see my organ.

I felt my chest and I worried that I wouldn’t be able to take the nap that I was promised. So, my anxiety began to rise. I hoped the nurses would help me. And then. I thought it was the anxiety. I thought, oh god, I know this feeling of being so anxious that I can’t control what’s happening in my body. Colitis has a fun way of controlling your physical sensations wherever it pleases. I thought maybe, I wasn’t getting enough oxygen and hoped they would turn it up! My heart pounded through those EEG sensors.

Then that anxious feeling, having a power bigger than your own free will, took me in its grasp.

“Woah.” I knew I was going somewhere else at that point.

It was not a nap. I felt my legs go heavy. Like I became only a chest and head, with my legs below me in another level of consciousness. That feeling moved up my body from both ends. I felt drunk, limp.

My head became heavy, without me feeling it, just knowing I couldn’t pick it up now. My chest calmed to a point of no sensation. My legs were still gone, somewhere else I didn’t understand, and my arms followed soon after. I was not falling asleep.

I was losing consciousness.

It was empty. No more feelings. I wasn’t in the room. I wasn’t in my dreams. I was gone. I went under to another place that no person could feel in any way. My body was lifeless. I had a concept of knowing I was gone. Not a feeling, more like an understanding.

My eyes rolled back into my head and I thought this was it. Not coming back this time.

Because, when I woke up, I wasn’t in that procedure room anymore. I was laying down next to a model-looking woman who asked how I was feeling. Feeling? I didn’t feel at all. I didn’t even sense what happened. Where was I?

I said I felt drunk. My body and my head were heavy. I felt good. Like I had no anxiety or fear.

Such a rare feeling.

But I was still nervous, so I kept talking. How many of these procedures do you do a day? I don’t know what she said, I didn’t really care. I was in a nest of a propofol hug and I wanted it to last longer.

I slowly jolted back into my regular level of hyperawareness to my surroundings and my physical body. After the drunkenness wore off, I wanted it back.

I was shocked by my experience with Propofol. So much so, that it made me think. I wonder if these anesthesiologists know what it’s like to go where I went, a place with no sense of touch. I wonder if they understand the power of this drug, pushed into the tiny plastic catheter on my hand.

When I die, I want to go out with that drug. Sensations erased, thoughts no more. I was a pile of physical matter, mere body parts.

I wasn’t taking a nap in my mind. I woke up and realized that I wasn’t done with this life. No more pain sounds nice though. To be done with any more worries of how to live day to day. Of how to be in remission, but still have a chronic illness. Of how to explain to others that the physical pain I’ve experienced in this physical body, would never be a match if I had an affair with propofol during the worst of my days. When I didn’t think I would wake up in the midst of my worst flare to date. In the darkest days, I would say to my disease, that the nerve rippling pain it caused were reminders that I was still alive. Why? I guess needed all those reminders to know that I would get through that.

The resiliency I learned in two years of a flare was beyond my awareness, similarly to the fact that life can be taken away with one syringe full of liquid. A chemical that could erase my pain and my worries. I hope going under is what it feels like when it is my time to die. I would take that goodbye over the constant pain that I’ve endured in this life, teasing the mortality in front of my eyes. Maybe my next life will be in the land of Propofol.

Community Voices

Hospital Lobby Encounters

A woman looks so distressed. Her chicken legs are visible from across the street as she walks toward the sliding glass door entrance to the hospital. Her hair is wet and her skirt looks like it isn’t keeping her legs nearly warm enough. The disorientation is clear on her face and she turns around trying to find her way upon entering.

There is a couple sitting next to me on a similarly hard wooden bench. The woman is wearing a wool winter hat and sunglasses. Her spirit is hollow. She’s entirely reliant on her husband/caretaker/brother?/soul-giver. He is on the phone, trying to stay calm. But this is his life now. Her suffering is his. They seem to have a child. A cute little tubby boy around 10 years old. He is sitting near the tree in the lobby. Such a central focal point of this area. He is crouched forward with a slouch that only appears through sadness and lack of confidence. Believe me, I can recognize that slouch anywhere. He is just a boy. But his mother’s suffering is now his. He won’t understand much of what’s happening, but this is normalized for him. Sitting by the hospital lobby tree and slouching because this isn’t a place for a healthy child. His mom just got up, she can’t bear to look across from her at her little boy anymore. She left to go on a walk. Solace in her own presence is what she needs. Maybe a break from seeing her suffering taken on by her family.

There is a young woman sitting next to me now. She has her back straight as a board. She’s 100% waiting for an interview. I wonder what the position is. Damn, I just looked up from my screen. She is gorgeous. Anyway, she is looking out the sliding glass door entrance. Trying to relax before being put on the spot. She has a clipboard on her lap, filled with her resume. A piece of paper illustrating the accomplishments she’s made. She wants this job so badly. I can feel it. It’s the straight back most of all.

Oh, the sun is coming out now. I can see it through the skylight and the entrance. Near the valet parking entrance.

The little tubby boy just looked up at his father/caretaker/uncle? and desperately wants cues. He is playing with his toy plastic car on the tiles near the tree. His mom is still on her solitary walk and his father/caretaker/uncle? is still on the phone.

This young black woman is now intimidating me. Her posture is truly exquisite and she is surveying the room to ground her down to what is happening. She is a bit uncomfortable and anxious for this interview. I would hire her.

There are more people milling around. They seemed to all show up at 10am. Feels like a rush hour in the hospital. There’s a nurse pushing an empty wheelchair back inside from the valet lot. Her blue/gray scrubs give away her identity.

There is an Asian couple walking in through the entrance and standing as they ponder what to take as their next step forward. The husband leans on his cane.

There is another Asian couple walking past. Each with a coffee in their hands. Walking quite prominently through the lobby. They are gone now. Probably on a mission.

There is an informational desk area. With a sexy as hell, black security officer standing and leaning on the counter. Ugh. Why. He knows it. Even though I only see his back. I need to stop. Now he is helping a beautiful woman and his stance is killing me. His legs are spread far wider than they need to be. Power stance. He walked out from the desk and asserted his dominance over the area. That’s cool. I exhale….

There is a round Asian/Hawaiian woman at the informational desk sitting down. I’ve seen her so many times before. She is sweet like a butterscotch candy. Until a man loudly demands to tell her where he needs to be.

She asks, “is your appointment at UCSF or Kaiser?”

“YES!”- the malnourished and worn down man says

“Is your appointment here at UCSF or is it at Kaiser?”

“I’VE BEEN HERE BEFORE”

“Please just go use the restroom and I will find out where you are supposed to be”

–He walks away and I haven’t seen him since.

This beautifully strong black woman next to me checks her phone again. Thinking ‘I wonder when they will call me back for this interview’. Offtah, the man on the bench next to her just got called back for an interview. That is intimidating. Don’t worry girl, you’ve got this. You are fucking owning this room.

Ugh this security guard is back. Hands in his front pockets now. OH YES THE POWER STANCE. Ooftah, exhale Kristen….. it will be okay. Omg but those combat boots!! He just left through those damn sliding glass doors. Oh geez. My computer’s gonna die. I should probs get a ride home now.

Main question: (as is usually is), will I be able to take the bus without shitting myself or should I take an uber? Hmmmm Ill ponder as I run to the toilet NOWWWWW