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.
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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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