The past few months have filled with a myriad of health issues, procedures, surgeries, and hospitalizations. It seems that everything that could go wrong, has. The complete rebellion of my body has left me distrustful of it, depressed, and on edge waiting for the next complication to happen. The emotional pain can sometimes rival the physical pain, and can lead to some pretty scary thoughts. I've had more than a few moments where I wished that the suffering would just end; that death was a favorable option over living in this pain. However, I have, by the support of my fiance, my determination, and my spiritual beliefs, kept going. Every day has been a challenge just to get through, and I've been anxious without having answers or any idea about how long this will go on.
This past week, I had the medical scare of my life. I contracted a staph infection that turned into sepsis. I had a fever of almost 105, a falling blood pressure, and was completely disoriented and delirious. I had no idea where I was, and no idea how sick I was. After being transferred from the local ER to the main hospital, my PICC line was pulled, two IVs were placed, I was pumped full of fluids and antibiotics. When I finally became coherent, I realized that I had no recollection whatsoever of the 72-hour period of my sepsis. In retrospect, I'm terrified of what could of happened. The reality is that I came very close to death. This reality has left me shaken, with a lot to process. One thing is that I am sure that I do wish to die, that despite my recent severe depression, I have a lot that I want to live for. Graduating college, getting married, having a career, traveling. I also realized that I still have some fight left in me. I thought that I had reached my breaking point and was almost ready to give up, but I'm not. I will take this illness day by day and get through it somehow.
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The term pro-life is a bit of a misnomer. The term implies caring for the sanctity and well-being of a person, including quality of life and opportunity to thrive. However, people who identify as “pro-life” often focus singularly on an anti-abortion stance.
One of the many arguments against abortion is that by aborting a fetus, you are robbing them of the chance to live a full life, and that a fetus deserves an opportunity to thrive. But what does that really mean? First, we must examine the reasons why a woman may choose to have an abortion. Maybe she is a scared young teenager who cannot properly care and provide for a child. Maybe she is a mother living in poverty that literally cannot afford another child, and the addition of a baby would rob her existing children from valuable resources. Maybe she is a disheartened woman in an abusive relationship, an environment that would be dangerous for a child. Or perhaps she is a rape victim, scared and ashamed of her unintended pregnancy. Women have abortions for a myriad of reasons, and everyone has a different story. Abortion is a resource for women such as these that are not able to or ready to raise a child. The choice to have an abortion is not a black and white issue, it is individualized and personal and should not be judged. Many people seem to stop caring once a child is born. They fight for rights of a fetus, but do not consider the rights of a child, much less the well-being of the mother. After a child is born, what laws and resources do we have to help mothers care for their child? How do we help single moms or families living in poverty? What mental health counseling do we have for teenagers and rape victims? How do we assist parents who have disabled or ill children? How do we help teen moms raise children and continue their education? The answer is very few. If a person wishes to take a pro-life stance, which is their personal choice, they should be equally concerned with caring for the child and mother as they are for the fetus. What about cases of late-term abortion in situations where the fetus’s life or quality of life is threatened? Detection of fetal abnormalities later in a pregnancy often results in the excited mother and her partner to face a difficult decision whether or not to terminate the pregnancy. Some families choose an abortion because the child would not have a meaningful life or would be faced with severe debilitations. Some families do not have the resources or support system to care for a handicapped child. These women are often sympathized with as they make a painstaking choice. However, some people do not believe that this choice is ok, and that someone is “playing God” and ignoring the possibility of a miracle. I do not wish to philosophize about the legitimacy of miracles, but scientifically speaking, modern medicine is usually correct when detecting fetal abnormalities. The possibility of a miracle is a reason that a mother may choose to continue the risky pregnancy. Either decision is an extremely difficult one, and a woman (regardless of her choice) should be met with support and love. My pro-choice stance is accompanied by a desire to reduce the needs for and the number of abortions performed. Pro-life and pro-choice people must unite to work to solve the issues of unintended pregnancy and providing resources for families who are in need. Let’s start with providing comprehensive, accessible sex education and affordable contraception to reduce rates of unintended pregnancies in the first place. Next, we need to address teen pregnancy. We must stop shaming teen parents and support them regardless of their decision. Pregnant teens who choose to keep their child often need resources to help them stay in school, raise a child, and continue their lives. Adoption is often an expensive, messy process that is not a viable for many families. Children who are unable to be cared for by their biological parents deserve opportunity to thrive, and adoption should be less expensive and follow a streamlined process. Families that do not have the monetary resources need assistance to care for the children they already have. Childcare, financial support, and affordable health care are crucial for caring for a child. Parents who have a disabled or ill child need extra support. Without affordable, accessible health care, many families cannot properly care for their child. Children with disabilities and illnesses deserve the same opportunities to thrive as other children. If you identify as pro-life, make sure that your stance is inclusive, open-minded, and problem-solving focused. We need laws, protections, and resources, and none of that can be achieved without social cohesion and understanding. We need to start to talking about chronic illness. Persistent diseases can push a person to their limits, both physically and mentally. By raising awareness for these issues, we can allow individuals who struggle with chronic illness to feel validated in their challenges and supported by others who understand what they are going through. People who do not have a prolonged condition also need to be educated in order to become better allies for others who battle illness.
I've lived with a chronic illness my whole life, and as a result have lost my entire colon. After my large intestine was removed, most people I knew assumed that I was "cured" and that my struggles had ceased. Unfortunately, chronic illness has no end game, it can wax and wane but it does not disappear. There is no magic pill, dietary change, procedure, or surgery that can just take it all away. Believe me, if there was, I would have taken it long before someone asked. As an ally of someone who has a chronic illness, it is important to consider how the person may interpret your words. It is never helpful to make suggestions of things for them to "try"; it is never helpful to press questions like, "When will you be better?", "Is this your last surgery/procedure?", "What's next?". The answer is that nothing is certain and chronic illness is unpredictable. I never know what is coming next, and that can be scary. It is better for you, as an ally, to ask how you can support your loved one. Treat them like a normal person; do not allow your view of them to be clouded by the fact that they are sick. I find myself weary of people assuming that I am incapable of doing things for myself and that I am frail. Let me take the lead and communicate my own limitations before assuming them. People with a chronic illness often just need a safe space to talk about their feelings and process their experiences. As an ally, you can be that person for your loved one. Recently, I've been battling severe gastroparesis, a condition where the stomach becomes paralyzed. No longer able to eat, I rely on tube feedings directly flowing into my small intestine. My already low body weight has dropped by twenty pounds and I have to battle dehydration and electrolyte imbalance every day. I have spent the past few months in and out of the hospital; I have undergone numerous tests, procedures, medications, and surgeries that have produced no results. Currently, I am facing the possibility of a more invasive surgery in attempt to achieve some level of normalcy and regain the ability to eat again. However, these surgeries are not a guaranteed success and come with a unique set of risks and serious life changes. This is the reality of chronic illness, a painful truth that must be unveiled in order for people to begin to understand what invisible illness is really like. Allies, break out of your comfort zone. Changing the way that society views and responds to chronic illness is a collective effort, and cannot be done without your support. Educate yourselves, allow yourself to be challenged and to feel uncomfortable. Help be the change you wish to see in the world. When living with a chronic illness, listening to your body is extremely important. However, learning to pay attention to your body's signals (knowing when to rest, say no to plans, going to the doctor when something doesn't feel right, etc.) is a difficult intuition to develop. For me, fear of missing out or disappointing others has led me to ignore what my body needs. I find myself frustrated with my body during a flare or after surgery; I feel isolated when can't do "normal" things. Sometimes, the desire to participate in regular activities overwrites my sense of my body's needs. However, when I ignore my body and push myself past my limits, I pay for it later. For me, like others who live with chronic conditions, learning to listen and actually respond to my body's needs is a constant mental, physical, and emotional battle. Individuals with chronic illness have to face the reality of the limits that their condition creates, as well as learn to let go of trying to control the body.
My recent surgery and complications have reminded me the importance of understanding my limits. Severe fatigue and discomfort have forced me to actually rest, something that I struggle to allow myself to do. I've been experiencing the kind of weakness that results in having to sit down and rest after simply taking a shower. I usually love to be active and stay busy, but this summer I have been forced to decrease my normal activity level and spend most of the day resting. This transition, while absolutely necessary, was mentally difficult for me. Like many others with chronic conditions, missing out on social activity creates feelings of guilt and uselessness for me. Despite the challenges, I have, for the most part, been listening and responding to my body's needs more. So, how have I made progress in this area? The support of my loved ones have helped me give myself permission to rest. When surrounded by people who openly love me regardless of my physical ability and remind me of this, I feel more comfortable taking care of myself. I have received some tough regarding my self-care; I realize now that when I ignore my body and end up hurting myself, I subsequently worry and hurt the people around me. Knowing that I am loved and have value has made it easier to allow myself to acknowledge my limits. Fear of missing out and guilt from cancelling plans has, in the past, severely hindered my insight into my body's needs. However, I have realized that the people who really love me for me are understanding and do not get mad when I am unable to do something. Most of my guilt and fear has been self-induced, and the unconditional compassion I have experienced from my support system has alleviated some of my unease. The size of the support system does not matter; quality trumps quantity every time. Even having one person who tries their best to sympathize with having a chronic condition is invaluable. The process of understanding and responding to limits created by illness can be a daunting and frustrating process. Even after years of living with my condition, I am constantly confronted with new challenges and forced to learn new lessons. Often, I learn these lessons the hard way. I still feel pressure to be "limitless"- to not let my illness stop from doing anything, to stay strong, and to be "normal" despite my circumstances. However, the idea of "no limits" is unrealistic and harmful. It's okay to have certain limitations and to not be able to everything that other people can. Having limits does not decrease one's value as a person, and it does not mean that life is any less meaningful and fulfilling. By learning to listen to your body and treating it with respect and care, you can actually increase your quality of life and learn more about yourself in the process. Like many other aspects of chronic illness, the mental toll of health scares and hospitalizations is often hidden and avoided in conversation. The trauma of experiencing flares, painful treatments, and the panic of your body betraying you can really affect mental and emotional health. The reality of chronic illness is an uncomfortable topic for most, and is often avoided. As a result, an individual living with chronic illness is left to deal with the effects of the trauma alone, and can feel isolated and invalidated.
"You're so strong!", is one of the comments I hear most often regarding my chronic illness. While this comment is meant to be encouraging and complimentary, for a person with chronic illness, it can be frustrated. Yes, we are incredibly strong people who have been through a lot. Yes, we learn to adapt and live our best lives despite the circumstances. However, hearing comments such as these often makes me feel like I'm not allowed to vulnerable. I feel that I'm supposed to always be strong and take everything that happens with poise and a positive attitude. Without feeling able to express my pain and struggles, I often feel guilty and apologetic for my feelings. Most people don't really want to hear about struggles, pains, anxieties, and emotional defeats; it's uncomfortable and often unrelatable. Emotional vulnerability can feel like a burden; however, I believe that expressing fears and pain can be extremely therapeutic, healing, and raise levels of empathy and awareness. The reality is that individuals with chronic illness are not always strong. Sometimes, we get scared, we get angry, we feel sad and just want a hug. For me, especially when I go through flares of my condition, I'm both physically and emotionally exhausted. Physical difficulties exacerbate emotional difficulties. Fear creeps in, and anxiety increases. Recently, I've had some serious complications that have left me drained more than I have ever been. Fear surrounding eating, fear of going to the hospital again as a result of another emergency, and fear of the unknown permeate my everyday thoughts. I have to fight these demons every day, and during times like these, I do not want to feel like I have to always be strong. I crave permission to be weak, to not be okay, and to really say how I'm feeling. When feeling these things, the last thing people with chronic illness want to hear is a compliment of our strength. Of course we're strong; we don't have a choice. But our strength doesn't make us invincible to pain. We're human, and sometimes, we need extra support. It's okay to not be okay, and the best way to support someone who is struggling is to remind them of that. Negative body image can impact anyone, regardless of gender or circumstance. Media and societal pressures to conform to unattainable standards are unavoidable. Unconsciously, we internalize these messages and experience discontent with our appearances. Body trends come and go; the 'perfect body' is an ever-changing and increasingly unrealistic standard. When living with a chronic illness, where one has little control over the state of their appearance, it is very common to experience negative body image. Achieving genuine self-love is a difficult process for anyone, but individuals with chronic illnesses and disabilities face an extra set of body image challenges.
Society values youth, beauty, fitness, and 'flawlessness'. As a result of these standards, our culture underrepresents individuals with disabilities, physical challenges, chronic illnesses, and bodily 'imperfections'. The media very rarely positively and accurately depicts disability and illness, so those of us who face physical disabilities have very few relatable body-positive role models. The bodies of people who face physical challenges often have traits that are ignored or shamed in the media. In order to be more inclusive to people from all walks of life, media needs people to step up and proudly represent scars, mobility aids, medical equipment, and other characteristics of illness and physical challenges. The body positive movement that has recently gained traction often ignores chronic illness. This movement has made great strides in increasing awareness of eating disorders, encouraging acceptance of body size diversity, and erasing stigma surrounding stretch marks and cellulite. However, the work is not nearly finished; not until every body difference and unique trait is acknowledged and accepted on a broader scale. Even when changes of body representation in the media are enacted, body image and acceptance are still deeply personal processes. The journey to self-love looks different for everyone and does not happen overnight. In order to accept your body, you must first accept who you are. The relationship you have with yourself is one of the most important relationships that you will have in this life; like any other relationships, you face a unique set of challenges. Every person experiences body changes, but individuals with chronic illness and disabilities may experience drastic, frequent, and uncontrollable changes within their bodies. The lack of control over your appearance makes it even more crucial that you love who you are, no matter what the state of your body is. Everyone, regardless of their physical condition, has a unique internal ability and an individual set of qualities that deserve to be embraced and celebrated. At the end of the day, we are so much more than our bodies. My personal journey to self-love and positive body images is an ongoing processes. I am very proud of the progress I have made and, overall, I have gained the tools to accept the changes that my body goes through as a result of my condition. Each surgery has permanently altered my body in not-so-insignificant ways. My stomach has undergone the most changes as a result of my surgeries. I used to have a lot of insecurity resulting from my stomach and weight, but when I began to fall in love with my soul, I began to see myself as more than just a body. My scars tell a story, the dark circles under my eyes speak of painful nights that I still have the strength to wake up from, and my weight reflects the challenges I face and fight every day. Despite my body-positive victories, I still experience setbacks, I still get angry, and I still cry when I look in the mirror sometimes. I have days when the comments about my weight that I usually just brush off keep me awake at night. I have days where I hate how tired and weak I look. Body positivity isn't linear, but when you develop a better relationship with your soul, the frustration and struggles with your body can and will be overcome. It's okay to not be okay, and struggling is not a sign of weakness or defeat. So, how do I cope with moments of bad body images along the journey to self love? I meditate, I try to live in the moment and appreciate the beauty of the world around me. I count my blessings, I distract myself with things that I enjoy. Most importantly, I try to surround myself with people who love me for me. People who see me more as more than just a body; people who I connect on a deep level. When choosing company, I have learned the value of quality over quantity. In good relationships, both people focus on supporting and building each other up. A good partner, friend, or family member will look at you as more than just your condition or disability. Accept the love you deserve, and that includes the love you give yourself. Body-shaming is a culturally pervasive issue that criticizes, comments on, and assigns negative traits about an individual based solely on their appearance. Body-shaming can take many forms: direct verbal degradation, gossip, negative comments, seemingly harmless "suggestions" for a person's "improvement", or statements of concern. Not all body-shaming is malintent; in fact, many people who comment on the bodies of others do so out of ignorance or awareness of the words they are saying. Fat-shaming is the most commonly known form of body shaming, but skinny-shaming is prevalent as well. Criticizing or unnecessarily commenting on the appearance of another person can damage self esteem or make the receiver uncomfortable and irritated. Skinny-shaming is often seen as "benevolent" and usually does not inherently have a malicious intent. Today, I am addressing the comments that people with naturally thin bodies or those who suffer from chronic and serious illnesses receive. Body-shaming individuals with eating disorders is also a serious issue, but today I am going to be shedding some light on skinny-shaming towards those with chronic illnesses. I have always been naturally slender; my healthy body is slim and I've never had to work to be thin. In fact, I have to work to gain weight. As I entered college, I began to hear comments from girls my age about my figure; they would express their "jealousy" or praise my thinness as though my weight is the best thing I have to offer. These comments are most likely rooted in the other person's insecurity about their own appearance and the high premium that our culture places on body size and beauty. I can easily brush these comments off, although they do make me slightly uncomfortable as I do not have any response to offer. Mostly, I find myself lamenting how cultural ideals are so permeable to the way we view ourselves and others. I also have a chronic gastrointestinal illness. My condition has resulted in numerous surgeries, including the removal of my entire large intestine, the sewing up of my rectum, and the placement of a continent ileostomy, or BCIR. My surgeries have completely altered the way that I can digest food and have seriously limited the foods that I can eat. I do the best I can to get adequate nutrition, but it is still difficult and often frustrating. When I go through a flare of my condition or have surgery, I quickly drop weight (weight that I didn't need to lose in the first place). Even a five-pound weight loss really shows on my frame. Any sort of skinny-shaming I experience on a regular basis increases exponentially when I lose weight from my illness. This weight loss is unintentional and out of my control, so I become more sensitive to the comments I inevitably receive. Everytime I lose weight, many people decide that it is ok to comment on my appearance. Recently, I underwent a major surgery to create my continent ileostomy and close off my rectum. I was in the hospital for two weeks, and was unable to eat anything for the entire stay. A week after coming home, I developed an internal abscess and infection and had to be hospitalized. During this stay, I was too ill to eat and subsequently dropped more weight. Currently, I'm about ten pounds under my normal (already low) weight. I'm the first to admit that I currently do not look healthy, and I so desperately want my strength back. Gaining weight and strength takes time, especially with a compromised GI tract and fatigue from illnesses. Dealing with major surgery, infection, serious pain, and a loss of appetite is difficult on its own, but my frustrations increase exponentially when the body comments start rolling in. Some of the comments I hear include: "OMG, you're so skinny!" (Thanks for bringing that to my attention. I had no clue.) "I wish I could get you a burger!" (I have severe food restrictions. It's not that simple.) "Can I please feed you something?" (How about I just tell you when I'm physically able to?) "Are you sure you don't want anything to eat?" (I really can't. I'm sorry.) "You look like you might blow away in the wind." (I guess I better put bricks in my shoes so I don't.) "Wow, I wish I could be skinny like you." (No. You. Don't. I wouldn't wish my illness on my enemy.) "I wish I could donate some of my fat to you." (How do I respond to this? I'm uncomfortable.) I fully understand that these comments are not said to hurt my feelings or criticize me; I know most people say these things out of concern. However, comments such as these are more harmful than helpful. Chronic illness and chronic pain make people weary, fatigued, and sensitive. Comments on a body that a person has no control over the appearance of add a new layer of frustration and weariness. When I am sick and I start to hear people comment on my skinny body, I have to work to restrain myself from saying what I really *want* to say. I think what frustrates me the most about body/weight comments is that it reiterates the fact that people are seriously examining and looking at my body. I feel like people are not actually looking at me, but at my body. I am so much more than my body and weight; I think that there are much better and constructive topics to discuss than the state of my appearance. Often, people will present "helpful suggestions" to try to get me to eat more. These comments are the most frustrating. I am trying; if it was as simple as drinking a milkshake, I would be drinking them constantly. Instead of trying to be "helpful", trust that my doctor and I are both aware of my weight loss and are working to try to make me healthy again. If a person is really concerned about me or wants to show their support, the best thing to do is to ask if I am willing to talk about my condition, share my experiences, or if they can support me in any way. Education about chronic illness is necessary to better understand what a chronically ill person is really going through. Instead of making assumptions or making ignorant comments, think about the power of words. I am more than willing to answer questions about my condition; in fact, I believe that the best way to erase chronic illness stigma is to start a conversation. Before you comment on another person's appearance, push food on them, or attempt to make "helpful suggestions", consider how the other person will feel about these comments and be sensitive to the fact that they are going through something difficult. People are so much more than a body- we all have dreams, goals, passions, unique personalities, and individual souls. Look beyond weight and appearance and see the person beneath the skin. http://bcir.com/learn-more/how-it-works.dot
Having an ostomy is nothing to be ashamed of. I've struggled with chronic intestinal illness throughout my entire life, and have undergone numerous tests, medications, and surgeries. I've had an ileostomy, I've have my colon removed, I've had my ostomy reversed, and now I have a continent ostomy, or a BCIR. I resisted the idea of having another ostomy, but my body just was not adjusting to having my small intestine attached to my rectum. My quality of life was decreasing, and as a college student, dealing with gastrointestinal inconvenience numerous times a day was wearing me out, both mentally and physically. I needed to try something else. After lots of research and conversations with my doctor, I made the decision to give the BCIR a try. My summer plans were thrown out the window as I traveled to California to undergo BCIR surgery. Very few surgeons are trained in BCIR surgery, which is the updated version of the controversial Koch Pouch. The surgeon I chose has been performing the BCIR procedure since 1989; I knew I was in excellent hands. My hospital stay after my surgery was two weeks. Recovery in the hospital was difficult to say the least; I had six tubes coming out my body, a few minor complications, and a lot of pain. My boyfriend stayed by my side the entire time and helped me so much. I am so thankful for him and his support, along with the support of my mom and one of my best friends who surprised me with a visit. After two weeks of tears, tubes, and triumphs, I was able to go home. I am currently recovering from my surgery with lots of rest and attempt at self care. The surgery recovery has certainly been more difficult than the rest, but I know that in time I will return to my normal self. Already, I can feel the difference in my body. Many of my previous symptoms have ceased, and I am adjusting to life as an ostomate again. Already, I love my BCIR. Unlike a conventional ileostomy, I do not have to wear an external appliance, or bag. I don't have to worry about leaks, and I'm no longer glued to the bathroom. It's only been three weeks, and I'm so relieved I decided to go through with this surgery. This surgery has given me a few revelations: 1. It's ok not to be strong all the time. I have always felt pressure to save face, to hide how I'm feeling and how I'm processing everything. I shouldn't have to hide my struggles. I don't have to pretend that everything is ok. 2. It's ok to cry. I've cried over the past three weeks more than I can ever remember. I've been allowing myself to experience my emotional responses. It's ok to cry from pain, it's ok to cry from being overwhelmed, it's ok to cry simply because you need to. Crying isn't a weakness. 3. Never take eating for granted. My love/hate relationship with food is more on the "hate" side. My GI system is recovering and struggle-bussing from all the new changes. Eating hurts right now, and it's frustrating. Confined to soft and liquid foods, all I really want is a sandwich. Please, never take a normal GI tract for granted. 4. Love makes things so much better. I'm so thankful and blessed for the support. Thank you to everyone to who texted me, called me, and stayed by my side through my illness. Feeling loved is the best feeling in the world, whether it's by family, friends, or the person you are in love with. It's incredibly healing, and I'm so happy that I don't have to this alone. My body has changed a lot in a short period of time, and I'm adjusting to these major changes. I dropped quite a bit of weight from my already slender frame, and it will take time to restore my weight. I have several new scars that adorn my belly. A scar from the gastrostomy tube I had in the hospital, a few scars from the drains that were sutured into my body, and a very long vertical incision that extends from above my belly button down to my pubic bone. My belly button is now an outie. My formerly toned stomach is now slightly obscured by scar tissues and scars. It is very hard mentally to deal with these changes, and I'm not going to pretend that I haven't had some negative thoughts. However, I'm trying to remember that our bodies are just vessels for our souls, and who we are on the inside is what matters. I'm slowly working towards loving my new body. Awareness about ostomies and bowel conditions needs to be spread! There is no reason to be ashamed of your struggles, even if they involve "embarrassing" or taboo parts of the body. Yes, I have a hole in my lower abdomen that I must drain with a catheter several times a day. Yes, I don't have a large intestine. Yes, I don't go to the bathroom like everyone else. And I'm still human, I still have value, and I still have a purpose The stigma surrounding chronic illness, bowel diseases, and ostomies needs to be erased. Through education and open dialogue, I believe we can work together to change the way society views invisible illness. |
AuthorWelcome to Sickness and Society! I'm Jenna Lee, and I hope to work to create an open dialogue about chronic illness that leads to change about how society views illness. Archives
November 2017
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