Over time, you’ll find the techniques that work for your body in its worst state. In the meantime, don’t feel ashamed. Sick or healthy, your body will go through many periods of change. It’s highly unlikely you’ll remain the same weight as you were in high school. You’ll develop scars both surgical and unintentional that will alter the landscape of your skin. When it comes to body-confidence and the status of your disease, you will soon learn that the needs of your disease will come first. Sometimes that will mean eating a carb-heavy meal when you’re trying to lose weight. Sometimes that will mean taking a few days off your exercise routine to let joints and tendons heal. It may not be ideal to have to curb your routine to your health needs, but ultimately you are doing everything and anything you can for the betterment of your body.
Shame: I’ve Sure You Two Have Met
Chronic illness has a way of killing your assertiveness, stealing your self-esteem, and creating very large voids of depression that drain your confidence and mental fortitude. It’s hungry, and it’s ready to feed on your shame. But, shame is a not a chronic illness problem. It’s a human problem.
Dawn Wiggins, a licensed marriage and family therapist, who also happens to be a chronic illness patient herself, explains this concept of shame in relation to chronic illness. “Shame can be sneaky. It tries to tell you that you are not good enough. My personal experience with a chronic illness allows for special empathy and compassion for those who experience chronic illnesses or pain. My own story is one of perseverance, insistence on hope, and a reliance on a spiritual practice. Chronic pain, emotional or physical, can test patients and their families beyond measure, complicate their lives, and get in the way of reaching their goals educationally, socially, professionally, and mentally. I understand and can relate to the challenges of emotional and physical pain, and can instruct and empower patients who may feel their lives will never have a semblance of normalcy.” Though it is easy to feel isolated in your shame, it does help to know that you are not the only one. I interviewed many invisible chronic illness sufferers for this book and they all reported the intensity of shame.
Sara, a twenty-three-year-old Crohn’s disease patient, and Leanne, a twenty-five-year-old chronic illness patient, both dealt with judgment from their families and peers. Sara struggled to make friends who were unnerved by the idea of socializing with someone with a bowel disease. Leanne’s family completely misunderstood her disease to the point that they wouldn’t even let her hold her newborn nephew for fear that he would catch something or be dropped.
I asked expert Dawn Wiggins about these cases and the millions like them, and she had some insight. “When we become flooded with emotion, our logical brain has trouble working! The first step is to take a breath and assess our shameful thoughts.” In a case like Leanne’s, Wiggins says, “new parents are riddled with fear and insecurity and some parents cope with this fear better than others. The instruction to never hold the baby was meant to protect their child, not hurt their sibling.”
It’s only human to feel shame when we receive negative social feedback. But this negative feeling doesn’t mean that we are unworthy. It’s just a feeling. The important thing to focus on is that you get to decide if this feeling is a fact.
When overcome by shame, the best thing to do, according to Wiggins, is to “take some deep breaths and think of someone you can call or something you can do (like taking a walk, coloring, or reading something inspirational) to help bring you back to a more balanced place. To become an expert in the face of adversity we must develop the understanding and belief that what other people think, say, and do stems from their own feelings and experiences and is not a commentary on our worthiness.”
The Shame of Invisible Chronic Illnesses
Okay, so we’ve cleared up the myth that shame is a solo experience. However, for patients like Sarah and Leanne, feeling excluded can be a huge shame trigger, especially when its related to something we cannot control like having a disease.
For me, living in sunny Florida, my friends always want to hang out by the pool and have a few drinks. Unfortunately, I can’t participate in these activities. My condition already creates a general constant dehydration for me, and humidity and alcohol exacerbate my symptoms. I’ve found myself making up excuses that are everything but the truth. Feeling excluded from these hangouts is a bummer, but I’ve learned that I’ve just got to maneuver myself around them. Dinner afterwards? Hangover-resolving brunch the next day?
There are also other shame triggers that can pop up with your invisible chronic illness. Tricia Holderman, now fifty-years-old, had her first ileostomy (a surgical operation in which a piece of the ileum is diverted to an artificial opening in the abdominal wall) at twenty-four-years-old and found herself overwhelmingly self-conscious after her first surgery. “I’ve had Crohn’s disease for thirty years now. I will always have an ileostomy, as there is nothing to reattach my intestines to. I have had a total of fifty-eight surgeries, including many resections, five hip replacements, many scars from feeding tubes, and, of course, this lovely bag on the side of my body.”
For patients with chronic illness like Tricia there are a slew of things necessary for survival that can trigger shame. If your experience is anything like mine, you may soon be looking forward to:
Devices like wheelchairs, walkers, canes, and having to use a motorized scooter in grocery stores
Surgical scars, visual psoriasis, or other skin conditions
Devices like colostomy and ostomy bags, drainage tubes, insulin pumps, ports, and PICC lines
Epileptic helmets, tracheotomy tubes, and special shoes or stockings
While it might be less awkward to not have any of these devices, they are, most often, not optional. Most patients will wait until their absolute breaking point before getting on a grocery store’s scooter or wearing any remotely revealing clothing that might expose scars or other signs of disease. They may think that people are staring or judging, or that they’re abnormal or different. Self-defeating thoughts like these might begin to creep in. I know I thought all of the following more times than I care to admit.
I’ll always be different from everyone else.
People will always see my port/tubes/device before they look in my eyes.
I’ll never have the freedom that healthy people have.
I’m not worthy of relationships when my disease means I can’t contribute 100 percent of the time.
It’s important to begin the process of chasing away these self-defeating thoughts as soon as they come to you.
Overcome Self-Defeating Thoughts
Feelings of depression can pull the light straight out of your world. In situations where your disease has made you feel humiliated, misunderstood, ridiculed, and abnormal, your thoughts may go right to the worst conclusions. If you start to catch yourself thinking some of the phrases above, try to reason with yourself. Don’t validate absolute statements with reasoning; “always” and “never” are not always the case. You are not “always” inconveniencing people. You are not “never” feeling well enough to see your friends. You may just be having a particularly bad flare up.
Remember Who You Really Are
Why such a silly statement? Because when a disease feels like it’s started to take over your body, you must consciously, forcefully, and repetitively remind yourself that you are still the person you were before disease. The disease is not all of what makes up your character. Remind yourself of your positive qualities. While other people’s first impressions may misalign with what is true, it doesn’t mean a chance to have a connection with them is ruined. There will always be time to change another person’s perception of you. If you know who you are, communicating your truth with new people will come easily.
Stand Up for Yourself
Stand up for yourself when someone tries to knock you down or makes you feel unworthy. However, the person you’ll fight the most emotional battles with is you. You must be your own personal advocate. Don�
�t be a bully to your own subconscious.
Coping with Body Shame
Once you’ve been diagnosed with a serious disease, the relationship to your body can be profoundly altered. After discussing the topic of body shame with several patients and mental health professionals over the course of my illness, I learned that there are some coping mechanisms you can use to deal with your mind-set around sudden or gradual physical changes. Kait Scalisi, a sex educator who works with chronic illness patients, provides some strategies for responding to the psychological impact of how chronic illness affects our bodies and how we feel about their worth during sickness.
Focus on the Positive: The first strategy she suggests is to begin by focusing on the things you do like about your body. This can be especially challenging for a population of patients who spend most of their days just trying to get their body’s tantrums to quiet down long enough to get through one activity and on to the next. Start naming parts of your body that you’re grateful for. Not just aesthetics either. Can you eat today? Can you walk? Can you see clearly?
Get Naked: Get familiar with your body. It’s a good rule to be aware enough of your body to know when serious changes have occurred. It’s also useful to familiarize and get comfortable with your physical frame. Face the changes head-on each day.
Find Your Role Models: Okay, so we can probably cross Tyra Banks off the list, but there are plenty of men and women whose bodies are beautiful even though they’re not the norm. Find inspiration in the stories of patients running marathons to raise funds for their own treatment, wearing bathing suits in public despite having visual medical devices, and even going into careers as professional models for their unique and inspiring appeal.
The key to body confidence for Scalisi is that you “focus on all the things your body can do.” The operative word is can. Scalisi says, “Perhaps you have gained weight but still can inspire a room with your voice. Perhaps you’re in a wheelchair but the best cook on the block. Perhaps you have surgical scars or an ostomy bag but can still teach your favorite fitness class. Such thinking helps put the changes you’re experiencing, which can sometimes feel overwhelming, into perspective.”
Cultivating a New Attitude Away from Shame
It can be difficult to learn to love the invisible and visible scars of your disease and not be ashamed of them and your body. Scars can be terrible reminders of the pain you experienced, but they can also be reminders of having overcome. After my first abdominal surgery, I would look down at my body in the bathtub and just cry. My scars had healed into raised, keloid mounds and there were just so many of them. I could never wear a bikini again! But over the next few months, as I experienced unimaginable relief from my surgery, I realized that my scars were a small price to pay to be able to eat, to have more energy, and to experience so much less pain than before. They became symbols of strength to me. And when it was time for the next surgery, I met my recovery with the confidence that any imperfection on the inside was worth whatever reflection on the outside.
Although Travis Love, thirty-years-old, suffered from shameful thoughts about his chronic illness, he was also able to cultivate new ways of thinking about the scars of his disease. At seventeen years old, he had two scars because of doctors failing to install a life-saving device on one side of his chest on their first try. “I have two scars and a bump where the port is now,” explains Travis. “What’s worse is that they installed one size larger, thinking that my body would grow into it and it never did. But, when they were implanting the port, they fixed the hernia and I finally had a stomach to show off. I was tired of hiding, so most of that first summer I walked around the house without a shirt, just getting used to the concept, until one day I answered the door without thinking about it.” What sets Travis apart and makes him a great example of how we can fight back against our self-defeating thoughts is his attitude.
As Scalsi mentions, getting used to one’s bare appearance can encourage approval about your body. This is not to say that Travis was never self-conscious about his body or port from then on, but his attitude of flexibility and non-judgment helped drive his decisions about how he wanted to treat his body. To cover up one of the scars on his left chest muscle, he got a tattoo there and on his arm. He explains that these have been great talking pieces, as well as an easy distraction from his port when summer comes around, because they “stand out quite a bit in contrast to my ghostly white skin.”
Travis has always had his positive attitude to fall back on. Admittedly, some of us don’t, which can mean your self-esteem can sometimes take a beating. If this is the case, it’s important to try and cultivate an attitude to combat these feelings:
Know your limits. If your symptoms are flaring up, it might not be the time to vigorously exercise. Rest when you need it even if you’re worried you’ll be judged as lazy.
Know that change is inevitable. Even if you didn’t have a chronic illness, you probably wouldn’t have gone on to have a size zero wardrobe past puberty. We are always changing, sometimes we even go back to the way we were before.
Know that life goes on. You may now have to get around the grocery store in one of those scooters, but you still must pick up pop-tarts. Don’t be embarrassed when you need to mobilize yourself in a new way.
Know you’re never alone. Man or woman, young or old, sick or well—we all have deep psychological scars. “We are the only thinkers in our minds. What you think about yourself will dictate how much or little what others think affects you,” Dawn Wiggins reminds us. “We get to decide if our diagnosis is going to steal our joy, identity, determination, our compassion and empathy for others, and most importantly our worthiness.” It won’t happen overnight, but making time and focusing on accepting your imperfections is as important as any other pill you’ll have to swallow.
Tell Your Story
Though it is important to seek the opinion and counsel of experts, in my research for this book, I heard several self-soothing ideas that help to fight against the shame monster. Though I heard similar sounding ideas from many others, Tricia summed them up beautifully: “One of the things that helped me the most was talking to young girls and women who were about to have the surgery I had. I realized how much better life and living were after the surgery.”
Telling your story in all forms, whether spoken as a mentor, written online, or communicated to a friend, can be a strong tool for healing and can help you make sense of some of the conflicting feelings you might have about your disease. Yes, you may have garnered some unwanted results, you may still feel separated from the norm, but for the most part, has your life improved with treatment? What have you learned about your personal character and strength through your journey?
“My advice,” Tricia continues, “would be to respect the needs of your body first.” Regularly, we’re faced with two options: fight and conceal what we feel to be embarrassing symptoms or accept and explain our disease to ourselves and others. By honoring these self-defeating thoughts of I’m not good enough, I’m not normal enough, I’m not beautiful the way I am, I’m unlovable, my disease is all I am, we encourage ourselves to crawl deeper into depression, anxiety, and isolation.
Practice Positive Thinking
It’s only natural to have moments of self-doubt when it comes to our appearance. We can’t look perfect in every photo. We won’t look perfect in every outfit we try on. Coming to peace with your body doesn’t mean feeling entirely and completely satisfied with your appearance. It means you have accepted the reality that, at the moment, your physical health is more important than your vanity. Here are some tools to practice positive thinking when self-doubt creeps in.
Find an outlet to express and challenge negative thoughts. For me, it was blogging. I needed to write down my daily experiences so I could remember the good days and know that I was not always unavailable to my friends and family. You may want to do the same. You could take up photography to capture the great things in life, or take on other creative proj
ects that can help you compile the positive points in your life.
Be at peace with your appearance. As I’ve already discussed, sometimes all it takes is a regular good look in the mirror. You may want to make a list of the parts of your body that you love or the sports, activities, or talents that make your body unique. You may also want to put the clothes that you no longer feel look good on you into storage for a while. Maybe they’ll look good again in the future, but they shouldn’t be hanging in your closet as a daily reminder of where you no longer are. Start dressing for the body you have and you’ll experience less internal self-doubt over your appearance.
You could also utilize other ways to highlight your best features. Change your make-up routine. Find new fitness routines that you can manage that may focus on areas of your body that are not affected by your disease. (For instance, you may have arthritic joints in your knees, but you’re still able to do upper-body work outs.) You can focus more of your attention on toning your arms than on worrying about wearing short shorts.
Look in the Mirror with Fresh Eyes
I still have my running shoes by the door. I didn’t stop buying clothes that both comforted and flattered me. And even on my ugliest days I make the effort to look myself in the mirror and try my best to laugh. So, this may not be the best day for my glamour shots, I think, but I can’t compare pictures of my friends at parties on Facebook to what I’m seeing in the mirror this morning. Our bodies are running through two entirely different worlds. It’s in the comparison of those two worlds that compassion can get lost.
Surviving and Thriving With an Invisible Chronic Illness_How to Stay Sane and Live One Step Ahead of Your Symptoms Page 3