Taking Up Space: Showing Up in Our Lives and Bodies

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Recently, I had a client say to me that they feel like they are “taking up too much space”. When I asked them what they meant by this, they gestured over to their countertop full of medications, pamphlets from their doctor’s office, medical bills, a dried-up potted plant, cookbooks, and an assortment of magazines and books they had been wanting to read. This client and I spent a few sessions talking about their countertop and the deeper meaning that was bubbling just beneath the surface. This visual representation was really powerful for the client, who shared that they felt like that countertop looked like how they felt on the inside—messy, unorganized, unhealthy, and simultaneously too much, yet not enough.

            Many of the clients who come to work with me to get help in coping with their chronic illness experience so many feelings—shame, guilt, fear, grief, sadness, anger, confusion, and feeling like they are too much, yet not enough at the same time. We spend a lot of time in session exploring where these feelings came from. Quite often, the clients realize that there were a series of experiences that led them to doubt their worth and begin to shrink themselves down, smooth out their rough edges, and begin playing a role that others expect them to play. They have been led to believe that they are not deserving to take up space with their bodies, emotions, thoughts, needs, and existence. The idea of taking up space starts to feel like a luxury that they cannot afford and do not deserve.

            I am here to tell you that you do not need to shrink yourself down, smooth out your rough edges, or play a role that has been cast upon you by others anymore.

You are worthy of love, joy, connection, and acceptance just as you are.

You deserve to occupy space in your body, your home, your community, your relationships, your job, and in this world—just as you are.

There is plenty of room on this planet for you just as you are.

Our Shame Stories

            There is a lot of research that supports what many of us already know: living with a chronic illness can create feelings of shame. Social Worker, author, and researcher Brene Brown defines shame as, “the intensely painful feeling or experience of believing that we are flawed and therefore unworthy of love and belonging—something we’ve experienced, done, or failed to do makes us unworthy of connection,” (Brown, 2013). As meaning-making beings, we naturally fit information into little boxes to help us make sense of the world around us. It helps us restore order and control when we are feeling like we are in freefall.

We believe that if we figure out every perceived flaw before other people do, then it will protect us from harm. Instead, it keeps us at arms’ reach from true connection and keeps us stuck in feeling isolated and in our emotional suffering. It keeps us stuck in these stories of shame that tell us that we take up both too much and not enough space. It tells us that we are unworthy of love, connection, and acceptance when that cannot be further from the truth.

Unfortunately, these stories are often incomplete and incorrect and yet, we cling to them as if they are irrefutable facts. It’s a story being told to us by our shame. We act like lawyers in the court room trying to prove that beyond a reasonable doubt, we are flawed. We are broken. We deserve to feel ashamed. We take up too much space.

            Some examples of shame stories might look like:

  “My needs are too much for my loved ones to handle.”

“I don’t feel like I can really be myself around everyone else.”

“I can’t tell anyone about my health or how I’m feeling because they might judge me.”

“I hate my body.”

“I just can’t seem to get it right.”

“Nobody believes me when I tell them that I’m in pain. Maybe they are right and it is all in my head.”

“Other people have it worse. I shouldn’t complain.”

“I feel broken.”

“Everyone else seems to have it together. Why don’t I?”

“I don’t deserve my loved ones.”

“I’m failing.”

“I take up too much space.”

This list could go on and on—and it often does. It is what keeps us up at night. It sneaks into our moments of joy and tries to make us believe that we are unworthy. Do any of these examples sound like stories you have told yourself? What other stories often run through your head?

Where does shame come from?

Questions I often ask my clients about their shame stories include:
“Where does this come from?”

“Were you born with this belief or was it given to you from somewhere else?”

“What is your earliest memory of feeling this way?”

These questions help me get a better understanding of where their current beliefs about how their body should look, how it should function, what defines health, what it means to have an illness or disability, what it means to be “normal”, etc. came from. Author of The Body is Not an Apology: The Power of Radical Self-Love, Sonya Renee Taylor addresses these questions and their origins. She writes, “If I asked you to recall your first memory of body shame, it is likely that your story would have at least one of the following elements:

Developed in your youth

Was a response to rapid or unexpected body change

Occurred when you became aware of difference

Led you to assume there was some ‘should’ about your body

Was reflected or enforced by familial, social, cultural, and political messaging and systems of body-based oppression

Was attached to a story or belief about your value or worth in the world,” (Taylor, p. 30).

Sonya’s work discusses research that shows that the average age of becoming conscious of body shame messaging is between 13 and 14, but children who are younger are also increasingly faced with these messages.

What this means is that we have been bombarded with messages about how our bodies should look and function all our lives. These messages have come from various sources and have been repetitive and profound enough that we have internalized them as true.

One common example is social media. If you scan your social media accounts for just a few minutes, chances are that you will be flooded with images of your friends, family, celebrities, and people who seem to have it all together. Have you ever compared yourself to someone on social media? Take a second to consider what you were comparing and how that felt in your body.

Advertisements, retail stores, and magazines sell us this idea that happiness comes from looking and behaving a certain way. They will tell us we are flawed and unworthy as often as they can and then will turn around and sell us products to “help us” hustle for our worth. Many stores do not sell products for the diverse, unique bodies that will be utilizing them and do not have models who represent them. What messages have been shared to you about perfection in advertising? What products or services have you been encouraged to buy to get you to hustle for your worth? When you think of a model, what comes to mind?

Many businesses are often not ADA-compliant and their shops are unable to accommodate people with assistive devices or other special needs. Many businesses also lack training and education on diversity, disabilities, and barriers to accessing accommodations. Have you ever been to a store with cluttered racks, high up and hard-to-reach shelves, small aisles, limited descriptions of items, items blocking the floor, inaccessible restrooms, lack of signage, no ramp, and untrained staff?

Our loved ones might even be a source of our shame. Whether they realize it or not, our parents’ perceptions of body image, health, illness, disability, achievement, and laziness have added to the stories we tell ourselves today about our bodies. Our partners may shoot us a glance when we ask for another ride to an appointment or to pick up our medications. Our friends might plan outings and events that we are not emotionally or physically able to participate in and they become frustrated when we must cancel again. Recall some of these moments in your life with your loved ones. What messages did they share either intentionally or unintentionally with you? How is that impacting your thoughts about your body now? Has this led to avoiding important relationships or making new social connections in your life?

Employers are also legally allowed to ask some “pre-offer” questions about accommodations you may need. There are many jobs that list essential functions that have no relevance to the job itself. For instance, many jobs list, “Employee must be able to reach, bend, lift, push, pull and carry a minimum of 25 pounds.” This would make sense for a position such as a firefighter, but does not make as much sense for someone who may be working in an administrative or clerical role.

In 2019, Bradley University in Peoria, Illinois posted a job announcement for an opening as an Assistant Director of Diversity and Inclusion. In their job announcement, they wrote, “Must be able to access a non-ADA compliant building,” (Lu, 2019). While this seems highly ironic to post a job for Diversity and Inclusion and require someone to access a non-ADA compliant building within that posting, this experience is not uncommon. It makes it very likely that qualified candidates who are living with chronic conditions may not apply for these positions. Even worse, they may be fearful to disclose their conditions to their employer out of fear of discrimination. Have you had a similar experience at work or school? What do you think messaging like this means?

What do we do with this information?

            I share these instances with you to help you expand your perspective that you are surrounded by messages about what your body should look like, what it should be able to do, and what it means when you are not able to do what other people say you should be able to do. The examples I shared are just a few places where we might get messaging about our bodies from, but I encourage you to take some time to consider where you may have gotten the messaging about your body. Please also take some time to consider how this messaging is showing up in your life and whether it is keeping you from showing up in spaces and places.  

            I also encourage you to consider the ways in which you have given messages to others about how their bodies should be. It may be a glance at someone else on the beach and a snap judgment that runs through your mind about how they look. It may be telling a friend who comments on their weight gain during the pandemic that they are beautiful. Weight and beauty are not related. While your messaging may come from a place of love, we all subconsciously make judgments about other peoples’ bodies. The judgments we make about other peoples’ bodies reinforces the idea that other people are judging us too.

Spoon Theory

                        One of the ways my clients living with chronic conditions express that impacts them the most is their ability to do things without having to “pay for it” later. For those living with a chronic condition, daily tasks can take a lot of energy. For some, getting ready and going to their appointments can take up their available energy for the day and wipes them out. This means that running errands, doing chores, making meals, and spending time with loved ones might not be feasible that day. It might also mean that our loved ones might take on more of these roles. Cue the feelings of shame and guilt. A lot of times, our loved ones may want to understand how we are feeling, but do not quite know how to help. Or we may not be able to pinpoint why we feel so tired all the time and don’t know entirely how to get out of that space.

                        This is where the Spoon Theory comes into play! This concept was created by Christine Miserandino, who lives with Lupus. She came up with this concept when she was explaining her illness to a friend. The Spoon Theory is an excellent visual representation of the limited amount of physical, mental, and emotional energy a person living with a chronic condition has to give each day.

Imagine you have a handful of spoons. These spoons represent the units of energy you can expend for the day on all tasks. This includes chores, work, fun activities, appointments, and daily management. Once those spoons are used up, you do not get any more. If you keep pushing past today’s spoon limit, you are actually taking spoons away from tomorrow or even the next day. This means that you start the next day down a spoon before your eyes even open.

To keep it simple, let’s say you start with 10 spoons each day. Take away one spoon for:

·       Getting out of bed

·       Getting ready for the day

·       Making breakfast

In the morning, you are already down to 7 spoons. This does not include times when you are experiencing pain, did not get good sleep the night before, need to take care of pets or children, need to commute to work or appointments, experiencing daily stressors, or depression. Some days, getting out of bed and taking a shower might take all 10 of your spoons and that is ok. You are not lazy, you are not faking it, you are not alone, and your experience is totally valid.

Challenging Our Messages and Changing Our Lives

            Using the Spoon Theory is not only a great way to explain how challenging it might be to complete tasks that others might not have to worry about draining their energy in the same way, but it also gives us the opportunity to be mindful about what our bodies need and what our limits are. For instance, if you start the day with 10 spoons, you will be much more likely to be mindful about how you use them throughout your day. This may mean that you need to say “no” to certain things so you can say “yes” to others.

            Encourage your loved ones to consider how many spoons they have throughout the day. Normalize this discussion with your partner, your kids, your friends, your colleagues, and even your medical team. Saying, “I’m having a 4 spoon kind of day” speaks volumes to others who normally see you at 8 or 10. It allows you to be honest and authentic with the people in your life and it also allows them to be honest with you. It’s a shared language you can create together without having to explain why you’re feeling that way. It makes our expectations of ourselves and others more realistic and reduces shame and judgment. If your partner is having a low spoon day themselves, talk about what each of you need in order to preserve the spoons you have. This could mean:

Saving the dishes for tomorrow

Ordering groceries for pickup instead of shopping in the store

Spending time together doing a family activity that is relaxing

Going to bed early

Staying in your pajamas all day

Buying pre-cut veggies to save on prep time

Saying “no” to a social outing so you can say “yes” to an upcoming trip or special event you’re looking forward to.

This can also mean saying “no” to an event or outing at that you had previously said “yes” to. Even at the last minute.

This can also mean that you can say “yes” in a modified way. If your family is going to an amusement park, research it ahead of time and find places to rest and ways to participate, but not overdo it. If you are going to a family member’s house for dinner, stay for a couple of hours instead of all day.

Give yourself permission to rest so you don’t crash and burn out.

Visibility & Representation Matter

            Talking about your illness or disability is an incredibly intimate and vulnerable decision. Many of my clients share with me that they do not have many people who they can talk with about their diagnoses, symptoms, or experiences. For some, I am one of the first people they share their story with. There may be hesitation to share their stories with others because their illness might be invisible and complicated. Others may have shared their stories, but were met with judgment and a battery of questions. Others may not know how the people in their lives will respond and it is too scary to consider how they would react. I hear statements like, “I’m taking up too much space” and “I feel so alone” and “I feel like a burden” and “I’m scared nobody will believe me or understand me” to name a few. That is shame talking.

            When we share our stories, it takes away the power that shame holds over us. After some time in working with my clients, they come to realize that they are not alone in how they are feeling. I witness my clients take a huge, cleansing exhale when they realize that:

·       They are not the only person living with these experiences and that they can turn to others for support.

·       They are doing the best they can.

·       They have been able to share their story in a safe space without judgment.

·       They realize that they are not broken—and because they are not broken, they don’t need to be fixed. They just need space to be able to show up as their authentic selves.

·       They have worth, they matter, they are lovable, they deserve space, and their story matters. No strings attached.

·       Their story won’t be met with invalidating words or toxic positivity.

·       Talking about their feelings actually helps them feel better over time, not worse.

·       The shame stories and messages that they have told themselves were given to them by other people and places. They weren’t born with these beliefs.

·       Their bodies are not apologizes (Thanks Sonya Renee Taylor!) and they can learn to love and accept themselves as they are.

·       The way they talk to themselves is not how they would talk to a friend. Also, if they ever heard a friend speak about themselves in the same way, they would do anything they could to help them see their worth. This helps them recognize that they are holding themselves to an impossible, unfair, and unachievable standard.

For all of these reasons, this is why visibility and representation in our world matters. So many of us believe that we are isolated in how we are feeling. It causes us to shrink. This keeps us from connecting with others when that is exactly what we need.

Again, I recognize that not everyone wants to share their illness or disability with others—and that’s ok. Some spaces are not safe to share, but that does not mean all spaces are unsafe. Find your community who will love and honor you exactly as you are. Share your story in spaces and places with those who have earned the right to hear it. You might be surprised at how many people are able to give themselves permission to occupy space in the world and in their bodies because you have helped them realize that they are worthy of showing up exactly as they are.

So go ahead and take up that space in your body, emotions, thoughts, needs, and existence today and every day. Our world is better having you in it.

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Works Cited

Brown, Brene. (2013). Shame vs. Guilt. Retrieved from:  https://brenebrown.com/blog/2013/01/14/shame-v-guilt/#close-popup

Lu, Wendy. (2019). This Is How Employers Weed Out Disabled People From Their Hiring Pools. Retrieved from: https://www.huffpost.com/entry/employers-disability-discrimination-job-listings_l_5d003523e4b011df123c640a

Taylor, S. R. (2018). The body is not an apology: The power of radical self-love.

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