My Body isn’t Your News Story

I have a simple request. Can we please stop using women’s bodies as topics of news? My body isn’t your news story.

This past week, I had been traveling in Dubai for work. When I travel, in the mornings while I get ready I like to watch the news. Usually CNN or BBC. To my dismay, those channels were not available. The only channels available in English were National Geographic, Discovery, and E! Network.

As I prepared to hit the pool one early morning, and pulled on my one-piece I suddenly tuned into my chosen background chatter. The subject: Beyoncé’s post-baby diet. When I looked up to the visual, it was an extremely grainy, zoomed in paparazzi shot of Bey’s half-eaten apple. I’m guessing Golden Delicious. 

Yes. What you just heard is correct. A zoomed in shot of the apple carcass left over from the Queen B’s afternoon snack. The anchors proclaimed that Bey had revealed the secret to her weight-loss. Zero carbs, zero sugar, zero red meat, zero, zero, zero. 

INDIO, CA – APRIL 14: Beyonce Knowles performs onstage during 2018 Coachella Valley Music And Arts Festival Weekend 1 at the Empire Polo Field on April 14, 2018 in Indio, California. (Photo by Kevin Winter/Getty Images for Coachella)

I shook my head and proceeded to order waffles to my room. But then I heard one of the hosts question if it was, “too much too fast?” Now, I missed exactly what it was referencing, but whatever it was… it shouldn’t have been something that the public needs to weigh in on. Were they saying she had she returned to work too fast after having her baby? In that case, we should not be promoting mommy guilt, or judging mothers for their choice to or to not go back to work.

If they were talking about her weight-loss… again, this shouldn’t be up for discussion. Nor are these hosts certified medical professionals who get to have an opinion. 

Using Women’s Bodies as News Subjects

This is definitely not the first instance of women’s bodies or appearance being the subject of media coverage and attention. Half of most awards shows are just about how “well-dressed,” actors are, and if they have “pulled off” their look. And let’s not even begin to talk about how female politicians and nobility have their outfits discussed instead of their accolades. Then there’s the history of makeover and weight loss shows that “right wrongs,” or “unhealthy behavior.” And I’ll give a final shout out to shows like America’s Next Top Model. 

Then there’s the countless editorial content in magazines and online news media about the weight-loss or gain of celebrities, the diets that they’ve used, or spreads that pit women against each other to see who “wore it best.” 

I often wonder how those in the media can talk about women’s bodies so much, when I can guess that most would not want to undergo the same scrutiny. Yet, this practice seems to be tireless.  To be perfectly honest, though I don’t often watch E! Network, I had hoped that this is something that they had grown past. E! News, I challenge you to find other things to talk about besides women’s bodies. 

Affects of Observing Anti-Fat Behavior

Recently, a group of psychologists at McGill University found that celebrity fat shaming is associated with an increase in women’s implicit negative weight-related attitudes. UK Magazine, Stylist, says the following, “Implicit attitudes are people’s split-second, instinctive reactions as to whether something – such as fatness or weight gain – is inherently good or bad. Explicit attitudes, in contrast, are those beliefs that people consciously and openly endorse. In other words, we might never say out loud that we think bigger bodies are bad. But thanks in part to celebrity fat-shaming in the media, we may also find it hard to internally shake off negative ideas about weight gain.”

Specifically, researchers found that after witnessing a celebrity fat shaming, women experience a dramatic increase in anti-fat attitudes. Further, the more notorious or critical the fat shaming, the higher the increase. 

I’m going to take you back to some research that I’ve discussed before in my blog. The Girls’ Index, a report from Columbus non-profit Ruling Our Experiences (ROX), found that by ninth grade the percentage of young girls who wish to change their appearance dramatically increases. Simultaneously, the percentage of girls who say they are confident declines sharply. 

Today, women’s bodies are not only criticized and made the topic of conversation by Magazines and TV hosts, but by everyday people through social media. The same anti-fat attitudes are translated through social media as they are through TV and print. ROX found that the more time that young girls spend on social media, they are up to 24% more likelyto want to change their appearance. They don’t think that they’re good enough or beautiful enough. And 27% will delete an Instagram post if they feel like it didn’t get enough likes.

I ask again, why is this still happening today. A common practice in the 40s to the early 60s was listing a women’s weight and physical characteristics in newspapers. This was done even when the information was totally irrelevant to the story. History professor Michelle Moravec says, “The practice of including women’s weight — or any other physical observations — in the news has been a way, consciously or not, of “putting women into their proper place,” by giving more value to their appearances. For men, on the other hand, with the exception of athletes, characteristics like weight or attractiveness weren’t important, “Nobody’s describing like, ‘The male candidate in the gray suit got up to deliver a powerful speech,’” she adds. “That’s how you know it’s a gender dynamic: It sounds absurd when you apply it to men.”

Hell, we learned Condoleezza Rice wore a dress size between a 6 and an 8 before we could actually get into the article that talked about her security expertise in a 2000s New York Times article. What does this teach women about their worth? Why aren’t we applauding Beyoncé for her athletic prowess and commitment to her artistry? Would you want your dress size to be the headline of a story about you and your life’s work? 

I sure don’t, but to get it out of the way. I’m between a size 10 and 12, and if that changes how you feel about anything I just said, thank you for your time but kindly leave my page. 

Mindfulness Practice

I recently posted on Instagram about my mindfulness practice, and have had a couple of followers ask that I talk more about it. What better way than a blog post?

I should start this off by saying that I am not a licensed health-care professional. I do identify as a mental health advocate, though, based on my own personal experiences with my own and loved ones’ mental health.

After hitting the lowest of lows of my major depressive episode a little over a year ago, I started intensive therapy that involved meeting three times a week in a group therapy setting. The curriculum of these sessions was based on Dialectical Behavior Therapy (DBT). The goal of this form of therapy is to provide individuals with concrete skills to manage painful emotions and conflict in relationships. There are four overarching components of DBT: mindfulness, distress tolerance, emotion regulation, and interpersonal effectiveness.

But what really is DBT?

Four components of Dialectical Behavioral Therapy - mindfulness, emotion regulation, distress tolerance and interpersonal effectiveness.

DBT is a cognitive-behavioral treatment that was developed by Dr. Marsha Linehan in the 1980s to treat individuals with borderline personality disorder. It is now become an effective treatment for depression, eating disorders, substance abuse, bipolar disorder, and PTSD. As Psychology Today states, “DBT is influenced by the philosophical perspective of dialectics: balancing opposites. The therapist consistently works with the individual to find ways to hold two seemingly opposite perspectives at once, promoting balance and avoiding black and white—the all-or-nothing styles of thinking. In service of this balance, DBT promotes a both-and rather than an either-or outlook. The dialectic at the heart of DBT is acceptance and change.”

The way that I would explain this is that I can have an emotion driven, “irrational thought,” but also can identify it as such. Think about how sometimes you can give your friend advice that you can’t give yourself. Even though I know the thought is irrational, it still causes me emotional distress.

Today I’m going to talk about mindfulness, and in the coming weeks will explore the other components of DBT. So – here we go!

What is mindfulness?

Diana sitting looking over a cliff!

At its core, mindfulness is about being present and self-aware. To take it a step further, it is doing those things without being judgemental, without overthinking, and without invalidating your own experience in any way. Mindfulness is acceptance.

In the world we live in today, we really don’t spend a lot of time being mindfully present. We tend to disconnect from our actual experience to either live through someone vicariously on instagram, or just engage with our own thoughts rather than reality. Now, according to DBT theory, there are three states of mind that are in at varying times: emotional mind, logical mind, and lastly wise mind being the ideal state of mind. Wise mind is the combination of emotional and logical mind.

We use logical mind when we are doing concrete tasks, like math or putting together furniture from Ikea. Emotional mind, unsurprisingly, is the state of mind in which we feel our emotions and act from our emotional state. So things like acting out of anger or just plainly being impulsive.

Wise mind is somewhere in the middle. In wise mind, we are aware of our feelings in a non-judgemental way (mindfulness) and act in a way that is cognizant of our emotions and goals.

Chart of wise mind!

So what are the core skills of mindfulness?

Observe

Observe your thoughts, emotions and feelings without trying to change them. Recognize how you are responding to an event, and allow yourself to feel what you are feeling.

Describe

journal with pen

Whether just to yourself in your head, or using pen to paper – describe your experience. What physical manifestations did you experience? Rapid heart rate, crying, chest tightness? Where were you when this happened? What was the prompting thought? How did that thought make you feel? By describing in great detail your experience, you are able to show yourself a bit of empathy as well as later have a more firm grasp on your emotional response. Remind yourself here that feelings and thoughts are not facts (wise mind).

You might feel alone for example, but if you sit down and truly think about it there are people and support services that you can reach out to.

Participate

Be present. Experience things with all five of your senses. All the emotions to pass, and then engage with the present moment. This sounds easier than it really is, but that’s where a couple of techniques come into play.

Being more mindful

Being mindful involves being non-judgemental, practicing one-mindfulness, and being effective. Below are a couple of specific exercises to strengthen your practice of these things.

Body Scan

This is one of my personal favorites as it is very meditative, and engages your whole body. A typical body scan runs through each part of the body starting with the toes and working upwards. You pay attention to how each part of the body feels, focus your breathing to that area, and imagine the muscles of that area relaxing. Just search “body scan meditation” on YouTube and you will find many options. Below is one of my favorites. A body scan can be done at any time of day, but as it is really relaxing – it is most commonly practiced before sleep. This practice has really helped me with my insomnia.

One Mindfully

Identify situations in your life where you are trying to do multiple things at one time. For me, my biggest problem area is mornings. I try to do my hair and makeup, pick out an outfit, maybe change the load of my laundry, make my lunch and make my breakfast all at the same time. Doing so is usually chaotic and just anxiety-provoking.

You may find that you also do this after work. Many times I come home and look at my apartment and realize all the things I need to do: make dinner, empty the dishwasher, fold my laundry, take the trash out… And I enter a fury of doing all things at once.

Another situation you may do this is when hanging out with loved ones. Now that most of us have smartphones, we feel the need to constantly to attend to the information that we have access to.

One mindfully means concentrating on one thing at a time, and completely experience it by engaging all of your senses. When you are eating, eat. When you are walking, walk. When you are worrying, worry. When you are remembering, remember. Observe and listen quietly, and then reflect on your experience afterwards. Below are a couple of things that you can do one mindfully. One of my favorites is making coffee. My therapist taught me to approach it like it’s a scientific experiment – which really helped me to think of how to approach one-mindfulness. I really honed in on my observation skills.

  • watch rain falling
  • watch a campfire
  • listen to music
  • fold your laundry
  • make your dinner
  • make your coffee 🙂
  • listen to a loud clock
  • listen to the sound of the wind
  • pick a place in your home, or a chair that will be your “worry space,” when ever you are worried about something, sit there and worry. Observe how you feel for 30 minutes, then allow yourself to go about the rest of your day.
  • go for a walk to a park. sit, close your eyes, and try to identify 3-4 sounds you can hear. Can you identify from what direction they came from? Try to make out 2-3 smells from the air. Do those smells remind you of anything? Reflect.

Mindful Creating

Remember play-doh? Well go get you some play-doh. It is one of my favorite mindfulness mediums. Sit and play, create. Focus on how it feels and what it reminds you of. You can also practice mindful creating doing any sort of activity or craft that you like. I find crocheting to also be a super mindful activity.

Play a mindfulness game

I have an excellent support system, and sometimes when I’m in a bad place I just really need to be around people. There are a couple of games that we used in play in my group session that are really fun. They are mindfulness games because they require a lot of attention. Here are some examples:

  • Categories – pick a category and list as many items from that category as possible.
  • The alphabet game – pick a category and go around circle (or back and forth) listing items from that category starting with A-Z. So for fruit it would go, Apple, Banana, Cantaloupe…etc.
  • Play catch! You can also integrate playing catch to either of the games above. Throw a ball back and forth while you name items.
  • Play 20 questions with a friend
  • Play Jenga or complete a puzzle

Half-Smile

This exercise can feel a bit weird, but it has been shown to improve mood. But basically, sit in a chair or somewhere comfortable. Take a couple of deep breaths. Close your eyes if you wish. As you continue to breathe, make a small smile with your lips. Then relax your face. Continue to alternate and notice whether your emotions begin to change as you communicate feelings of acceptance to your brain.

Go forth, and live mindfully!

Dog practicing mindfulness

I hope that this post has been moderately helpful. I would love to hear about your experiences with some of these exercises. Lookout for future posts on DBT techniques.

Setting Boundaries in Toxic Relationships

I’m going to get straight to the point today. Let’s talk about setting boundaries in toxic relationships.

Whether it is at work, in your dating life, or with family and friends – we’ve all had to set boundaries before. I think that this is one of the hardest things to do in any sort of a relationship, because there is no exact way to do it. And, not to mention, nine times out of ten these aren’t physical, visible boundaries. They’re abstract, and the bounds tend to change day to day – or as our moods fluctuate.

But, some are easier to set than others.  We tend to feel more obligated to maintaining certain kinds of relationships than others. It is a lot harder to deal with a toxic family member, than it is to deal with a toxic friend. We feel as greater sense of responsibility and commitment to certain roles. And family in particular, has been defined by society as something that is always going to be a constant. Whether tied by blood or family history, these relationships seem more permanent. And when you decide that you need to distance yourself from a family member, you are often met with criticism for doing so.

One thing needs to be made clear. Disrespect and harmful behavior does not discriminate based on what kind of relationship it is. You can be mistreated and abused by a family member – and in fact are more likely to be in a familial relationship than in any other kind of relationship. But we put up with the abuse because, “they’re family.”

This is incredibly unhealthy, and only serves, in some instances, to continue the cycle of abuse. As a society we have interjected a degree of power dynamics into the structure and institution of family. We weight these relationships much heavier than those between friends. This can make it all the more hard to establish boundaries when you need to.

My Experience with Boundaries

A year ago I had to establish a firm boundary with a family member. In fact, my mental health depended on it. But I will not pretend that it has been easy. I still struggle with it today. I feel a sense of obligation to this person, and because of the norms and values of our society I often feel like I am being a bad daughter, or just plainly, a bad person for establishing a boundary between myself and my father.

But the fact of the matter is, I have been vastly more mentally stable and happy since I have created that line. I continually have the conversation with my therapist where I debate tearing that wall down, and using the concept of wise-mind, come to the conclusion that that would be extremely unhealthy for me. I have to work everyday to love myself despite that decision.

Now, this does not mean that I do not love my father. It means that because I love him, I too often allow his mistreatment and poor behavior to affect me at a really deep, and harmful level. And for a long time I justified that for him. I allowed the relationship to continue because I thought that I had to. But after I tried to confront the behavior to no avail or understanding, I eventually reached a limit that I did not know that I had.

I had gotten to a point in my mental health journey where I was a lot stronger than I had been in over a decade – and I saw that if I put my emotion mind aside, and considered some of what my rational mind was telling me – I needed to set a boundary. Here are some things to consider if you think that you may need to do something similar.

How are the person’s behaviors affecting you?

A landmark study found that there is a very real link between toxic relationships, stress, and your health. In fact, those in unhealthy relationships were at greater risk of developing heart problems, including dying from strokes or heart attacks, than those who weren’t in negative relationships. Our brains have a gene expression called conserved transcriptional response to adversity (CTRA), that is associated with inflammation and low immunity. Originally a part of our flight-or-fight response, CTRA provides short-term benefits such as increased healing, physical recovery and the increased likelihood of survival. But, long-term activation of CTRA can cause chronic inflammation, which increases our risk for a multitude of health problems.

Outside of the biological effects of toxic relationships, how else are they affecting you? Do they constantly make you feel bad about yourself? Do you feel like there is an unequal amount of give and take? Are you constantly drained from interacting with this person? Do you feel emotionally or physically unsafe?

If so, there are a couple of options: (1) feel hopeless and drained constantly,  (2) accept the relationship for what it is, (3) create boundaries, or (4) end the relationship.

Boundaries

Shoes of two people with a line separating them.

Step One

I suggest that you sit down and define for yourself what you want your relationship NOT to be. This will help you to identify what behaviors are of issue for you, as well as how the toxic person is making you feel. By knowing what you will not tolerate, you are priming your brain to recognize and avoid those behaviors and situations in the future.

Step Two

Envision what the ideal relationship with this person would be. When I say ideal, I mean imagine what it would be like if it was perfect and healthy. Then take that image and identify the stuck points – the things that the individual does not seem to be able or want to change. This really helped me to see that it was rational to set a boundary with my dad. I had tried many times to express what I needed from him and what made me upset, but he refused to take responsibility, made abusive comments, and continually lied to and gas-lighted me. Unfortunately, I knew that he didn’t have the desire to stop those things. But that made setting the boundary justifiable. I was able to define what a healthy, respectful relationship should look like, and I knew that this relationship wasn’t that.

Step Three

Decide the bounds. This is where there is a plethora of options, that truly depends on the individual situation. For me, I had to completely cut off communication. I had to engage the “block” function. Every interaction disappointed and drained me. And my mental health took a severe blow when it came to anything that had to do with him.

But this can look like many different things. Maybe you just can’t hang out with this person alone, or you need to decrease the frequency. Maybe you need to make it clear that you cannot constantly be available over phone or text. This could also take the form of setting ground rules about topics that you are not willing to discuss. At a recent event I attended, a woman spoke about how she had to tell her family that her body and weight were not to be topics of discussion, and nor did she want to talk about other people’s bodies. Instead she challenged them to have different conversations.

Step Four

Decide if you need to communicate to the other person what the boundary is. In some situations, cutting off communication is the boundary that needs to be formed. If that is the case, you may not want to communicate what the boundary is going to be. I knew that my dad would not understand, respect, or agree with the boundary I was setting, and I knew that that conversation would not be a healthy one.

But if you are in a situation that you need to make the boundary verbally clear – stay clear, calm and consistent. Don’t feel the need to over-explain yourself, don’t place blame, and don’t become defensive. Be a broken record, and stick up for yourself. If you know that you can’t easily do that in person, send a text or a letter. You are in charge here.

Step Five

Surround yourself with people that make you feel good. People that support you and respect you. Keep close the people that make you feel safe, and that help you to grow. In the past year, I learned that even family can be toxic, and even family can make their love for you conditional. But I also learned that I could find family in other people. By surrounding myself with positive and healthy relationships, I have been able to maintain my mental health and overall grow as a person.

You Are Worthy

Now I want to be clear, this isn’t an expansive step-by-step process – and I’m not a licensed, health-care professional. This is just a brief overview of how I set boundaries. Be aware that there may be situations where the individual doesn’t respect those boundaries, and at that time you may need to consider other options. If you, or a loved one, is in any sort of abusive relationship and need help, reach out to a local women’s organization or utilize the National Domestic Violence Hotline at (1-800-787-3224).

If you take anything away from this, remember that anyone can be a toxic person: a parent, a sibling, a boss, coworker, or friend. Know that you have choices, and that there are people who will support you – whether that support comes from close friends or community organizations. You are worthy of healthy, respectful, positive relationships.

Grief is a Sticky Feeling

I’ve been thinking a lot about grief the past two weeks. Grief is a sticky feeling. You can try and try to shake it off, but it usually is still stuck in some crevice in your skin, or under your fingernails. In some place that is hard to reach – making it all the more frustrating. To me grief isn’t one feeling. Grief is many competing feelings that send a person into a whirlwind of cognitive dissonance.

I’ve always been a highly empathic person. I’m what a therapist would describe as an, “emotional sponge.” I can easily sense the feelings of those around me. But I take it one step further – absorbing them to such a degree that I feel them as my own. Sometimes I feel so connected to an individual’s emotive state that I am psychologically affected by it. It’s like yawning. I can’t help but feel the emotion that I am confronted with in another person.

Last week, two humans that are close to me experienced loss in various forms. One experienced the death of a loved one, the other lost all of their belongings and their pet cat in a house fire. I struggled a lot with finding the appropriate way to support them. Like I said, grief is complicated and nuanced in a way that is both easy and difficult to empathize with. We can metaphorically put ourselves in their “shoes,” but we also can’t claim to know exactly what they are feeling. There are many things that can elicit grief, and no one person grieves the same.

Grief for Grief

Any sort of loss can cause one to enter what we call grief. This can include divorce, the end of a relationship, declining health, a loved one’s illness, or the loss of belongings or safety. Loss is personal to the individual, and there is no comparing apples to oranges. I have heard the opinion that grief is only something that you experience after someone you love dies. But, the same neuro-chemical pathways are activated across a multitude of situations. Though, bereavement of a loved one usually elicits the most severe grief response.

That brings me to my friend’s loss of her mother to cancer. Even just that sentence sends a blow to the gut that can leave you with the need to gasp for a little more air. To grab onto yourself or something around you to steady yourself. Hours before she told myself and our friends, she had posted an image of herself as a child with her mother to Instagram. It’s eerie, and gut-wrenching to say but when I saw that picture I felt a profound sense of loss.

I had this flashing montage of my life with my own mother pass before my eyes, and could feel what it felt like to have my small little hand within hers. I had a sudden fear of not feeling that hand anymore. And I had a deep urge to run somewhere, and not stop running because of this burning rage within my chest.

What do you say when someone tells you that they’ve lost someone so monumental in their life? Another human whose life led up to the creation of their own. A life that you love and are grateful for.

We all have this pre-written script of what you “should” say. And we say it, we say it because we know no words can suffice – but we cannot bear saying nothing. Similarly, living practically paycheck to paycheck there was no money I could offer to my friend who lost his belongings, but I offered the clothes off my back and blankets and essentials from my own things to him. I didn’t know what else to do, what else to say. I was so grateful that he and his partner were unharmed, but I couldn’t imagine the feeling of losing all the artifacts of one’s life. The things that we use to make meaning and keep record of our memories. Or the faithful companion that offered us unconditional love when everything in life is terribly conditional.

I thought for a moment about what I would grab from my apartment if I found myself in the situation of a house-fire. What I would try to save. Just the thought of having to prioritize the things that bring me joy or that mean something was difficult. It felt like either way I would lose some part of myself that I would never get back.

And though now in reflection I am thinking about what these kinds of losses would mean to me, what I am really affected by is a feeling of paralysis. Of not knowing how I can ease the pain of people that I care about. This feeling of helplessness is only exacerbated by my natural tendency to be a more “emotional” person. And all of this only serves to make me wonder if it is appropriate for me to feel this sad at all? But nevertheless, I know that I need to be supportive in any way that I can.

Emotional Acceptance

That is why some part of me is always nervous when it comes to funerals. Not out of fear or discomfort, but out of that absorption of the emotions of those around me. It can be overwhelming, and even if I did not know the deceased very well – I have a hard time containing my emotions. I cry. And sometimes I feel inappropriate doing so, as if I don’t have a right to. So I try to swallow the emotion that bubbles up the back of my throat, and instead just let my body shake ever so slightly.

And it’s not in that moment that I am thinking, what if it were my own mother. It is instead feeling that place of home that I feel when I am with my friend. We all find that piece of a person that is just what home means to us, and we place a stake there. We invest in that part of a person, and we love them for it and everything else.  That feeling of connection that is so powerful that in that moment, I feel her feelings for her because I wish that I could alleviate the pain if even just a little. Even though I know that there isn’t many a tangible thing that I can do to help.

And so I’ve realized that in those moments, the best thing that I can do is remind the person that the stake I placed to claim them as my person has never left. That I will protect and care for all my pieces of home, as they are pieces of myself.

That may sound terribly abstract, but what I’m saying is just be. Be and feel. Follow your loved one’s lead, and continue to be exactly who you are – because that is what they need. And remember that you don’t need to ask for permission to feel any sort of way. Feelings are natural, and for the most part out of our control. And through allowing yourself to feel what you need to, when you need to, you are displaying a healthy form of processing. And just by doing that, you are being strong for the ones that you love.

What I learned in my own mental health journey is that you can’t selectively numb emotions. Emotions will come and go like waves in the ocean (cheesy? yes), and if you try to avoid one you end up avoiding more than that. You need to experience the less positive emotions to truly appreciate the feelings of happiness and joy.

Sanibel Island Florida beach at dusk

Don’t be judgemental of your feelings. Our emotions provide us with signals. They give us the heads up that something is important and that we need to pay attention to it. Be an observer of your emotions. Notice them, sit with them, and then let them leave when they’re ready.

Finally, speak to yourself as you would speak to a loved one or friend who is struggling. Don’t beat yourself up for feeling sad or anxious. Be kind to yourself – processing emotion is just another part of having a full and healthy life.

Mental Illness, Stigma, and the Dangers of Not Getting Help

So I’ve been putting this one off. And even as I sit here and begin to write I feel uneasy. Even though I am very open about my mental health, I still experience internally imposed and externally received stigma. I fully believe that it is part of what makes me who I am. Yet, I know it can make people uncomfortable and cause them to trust you less. And sometimes others even dismiss you as just being, “crazy.” This is the first blog about my mental health (cue the deep breathing exercises).

I myself had a very public major depressive episode, and eventual break. I know this still colors the perceptions that those around me have of me. And I still experience blame. There are people who say it is my fault and that I could have controlled it if I wanted to. I know that much of this stems from ignorance and lack of knowledge. But what I honestly must say to those people is, “kindly, fuck you.”

In this post I argue that my expletives are warranted. I know what can happen when you ignore your mental health – when hide that you are in pain. Today I’m not going to present you with my full story. Instead I will discuss the dangers of not getting help and the hindering role stigma plays in that process.  

Stigma & Unconscious Bias

A CDC study found that 57% of adults believed that people were caring and sympathetic to persons with mental illness. But, only 25% of adults suffering from mental illness believed that people were caring and sympathetic towards them. Something called the Dunning-Kruger effect could explain this gap. This is the cognitive bias where people who are incompetent at something are not able to recognize their own incompetence.

As humans, I think we would all like to say we are caring to people who have a mental illness. But unfortunately, there is a deeply ingrained, unconscious bias at play. Take the following example. In the media, people are reduced to just being, “mentally ill” far too often. Instead, they should more respectfully be referred to as a, “person with a mental illness.”

By calling someone “mentally ill, you are not acknowledging that they are a person and not just that mental illness. That is a manifestation of bias. How often have you seen a news story about a, “mentally ill” person who has committed a crime? And how often do you independently associate mental illness with other behaviors that you would identify as “bad?”

A Single Story

Photo of Chimananda Ngozi Adichie with a quote that reads, "The problem with stereotypes is not that they are untrue, but that they are incomplete. They make one story become the only story."

Let me tell you about a concept called the “single story,” created by author Chimamanda Ngozi Adichie. She uses this term to describe the overly simplistic, often stereotypical, perceptions that we form about individuals, groups, or countries. A lot of her work serves to complicate and disrupt the single stories that many people have about Africa. I think that there are also many single stories that people have about those who live with mental illness.

Let’s do an exercise. Picture a person with depression. How would you describe them? How do you know that they’re depressed? What type of person do you think that they are?

You can keep the answers to yourself, but I hope that you see a bit of what I’m getting at. I had a single story of mental illness, and because of that story, and the stigma I saw associated with it, I did not get help for almost ten years. Let me tell you why.

I was “high functioning.” I was always an “A” student, overly-involved in extracurriculars, and friends with a wide variety of people. Out of college I had a stable job, paid my bills, and was involved in my community. But I was living all this time with almost no quality of life. Six out of seven of the days of the week having thoughts of death and self-harm. This does not mean that I did not have happy moments, but that the pain I was experiencing kept me from truly valuing those moments.

So I hid what I was going through. On the one hand, I didn’t look or act like what I thought people with depression looked like. On the other hand, I didn’t want to make the important people in my life feel unvalued because of my lack of interest and extreme pain. And being in a family in which others suffered from mental illness, I didn’t want to add to any heartbreak. At one point early on I did seek help, but continued to minimize my symptoms to my doctor and to the people I cared about. I didn’t want to put my life on hold and I didn’t want to scare anyone.

The stigma of having a mental illness and stigma of taking the necessary time to treat one kept me from doing so. I didn’t see myself as sick enough to get help and I didn’t want to change what people thought of me. Eventually, I sunk into a major depressive episode. An episode that lasted over a year and a half, and that culminated with me self-harming.

Effects of Delaying Treatment

The longer that one waits to treat their mental illness, the more complicated it becomes and the harder it becomes to treat. Various preclinical studies have shown that delaying treatment of mental illness can cause untreated disorders to become more frequent, spontaneous, severe, and resistant to treatment.

Additionally, a single disorder will most likely progress to more complex comorbid disorders that are harder to treat. You will most likely begin to experience chronic physical problems such as insomnia, gastrointestinal issues, and even chemical changes to your brain and other organs.

Outside of affecting one’s health, leaving a mental illness untreated is correlated to school and job failure and early, unstable, and sometimes violent marriages. At the extreme, some experience bankruptcy or homelessness. Further, there is an increased risk of substance abuse, incarceration, accidents, and suicide.

For those with major depressive disorder, like myself, only 35% are treated within a year of first developing symptoms. For others it can take 4 years or more. Going over a decade without treatment has left me with a lot more challenges to overcome. In addition to Generalized Anxiety Disorder, I also battle PTSD, and now have been classified as having medically-resistant depression as a result of long-term chemical changes in my brain.

Creating Conversation

This isn’t meant to scare anyone, but rather underscore that both stigma and lack of conversation are detrimental to those with mental illness. By othering those who have a mental illness, we push them into a state of fear when it comes to talking about and seeking help for what they are going through. If we can make mental health a part of everyday conversation, then we will create an environment that empowers people to take care of themselves and supports them throughout that process.

Personally, I did not start to get better until I independently made the decision myself to get the real help that I needed. I sometimes think that if our culture was more open and inclusive of people with mental health issues, that I would have sought help sooner. That I would have saved myself years of being numb. But I also had to come to terms with the fact that depression was going to be a companion to me for the rest of my life. It is something that I need to work each day to address. And with that I’ve slowly started to become less ashamed. I wouldn’t be who I am today without my depression.

Irish musician Niall Breslin said something about his depression that resonates with me. Breslin said: “It’s always given me an edge, over everybody else. I truly believe it’s given me an edge, because with depression, nothing can be as bad as that day when you’re stuck in your bed and you can’t get up, and you cannot look at anybody in the eye. So that’s how it’s given me an edge.”

Getting Help

If you are struggling with any kind of emotional distress or mental illness and need to seek help, please utilize one of the resources below:

Psychology Today – Find A Therapist, Counselor – https://www.psychologytoday.com/us/therapists

National Suicide Prevention Hotline – 1-800-273-8255

National Alliance on Mental Illness Helpline – 1-800-950-NAMI (6264) or info@nami.org

My Complicated Relationship with Dating Apps

Let me tell you about my complicated relationship with dating apps. I debated titling this post, “My Love-Hate Relationship with Dating Apps,” but when it comes down to it, it’s more like a meh-hate relationship. We all know the ambivalent “meh” feeling where you could take it or leave it.

I say, leave it.

The ruse of infinite options

Often dating apps are advertised as opening the door to a tremendous amount of options that you wouldn’t have had access to otherwise. While this can be true – there are over 7 billion people in the world but only an estimated 50 million of those people use Tinder, and only 40 million Americans report using dating sites. That’s only 27% of young adults in America.

That means that on average only 0.5% of an individual state’s population is on a dating app or website. Let me tell you, that is extremely evident in a small city in Columbus, Ohio. I have seen the same 20 or so guys across three different dating apps, and have matched with the same people that my friends have also matched with. That is definitely not infinite.

But because the way that these apps are set up lead us to believe that there are endless matches to swipe through, it actually sets us up for hardship. An extensive body of research on the psychology of decision-making shows that when we have too many options available to us, we are less satisfied with any one choice. The perceived abundance leads us to worry that we have chosen wrong, and you will continually second-guess if you have chosen wrong. As a result, you pass on many great date opportunities because you believe there to be endless options.

I’ve seen this manifest in many ways. I will swipe away with my index finger – to the left, to the left (thank you, Beyonce), only to notice that the app I’m on will start to show me people I’ve already said no to, or even people that I’ve unmatched because they were rude or inappropriate. They’ll even try to fool you by using a different picture from someone’s profile. And then once the app get tired of doing that, I will be told that there aren’t any more options in my location. Talk about discouraging.

Filling my shopping cart

What really disturbs me about dating apps, is that subconsciously I find myself treating the process like shopping. I’m looking for certain things, and like most people, am attracted to certain qualities or physical attributes. Now, shame on me for this but I tend to always swipe left if I see a gun, a fish, the picture is blurry, or if there is only group pictures and I can’t identify who the person even is. It’s like my own version of filtering through shoes to find the women’s, size nine velvet booties.

And just like shopping, I’ll just use the app because I’m bored. I’ll have some show like 48 Hours on in the background, and I’ll swipe through faces just for entertainment. Or like this past weekend, I’ll re-download the app just so my girlfriends can swipe for me and we can have a good laugh.

Now even worse, I’ll accumulate matches but then never message them. Get tired of the app, and delete it. And I know I’m not the only one because I have dozens of matches that also have never said a word to me (Back to the perceived abundance of options).

Haven’t you people seen Catfish?

This brings me to another phenomenon I’ve seen far too many times. I will have matched with an individual, and then either have a funny feeling because of their photos, or because of something that they will say, and I decide to upload their pictures into a Google Image search.

Then boom, I find out that they’re using someone else’s photos. Like come on dude, do you really think I was going to agree to let you take me on a cruise in the first ten minutes of conversation. Immediate red flag – I’m Google Image searching you so I don’t get kidnapped. Thank u, next.

As a woman, dating apps can be scary. You really don’t know who is behind the phone – and most of the time, when you practice caution, the other party acts completely offended. What’s even scarier, is that over 51% of online daters are already in a relationship. For instance, 30% of Tinder users are married. I’ve found myself in that situation as well, and as someone who has been cheated on — that did not go over well with me.

Treat a girl to dinner first.

Now you’ve matched, the person checks out on your Google search, and they seem alright. But then two different things can potentially happen. One is that they expect you to be available right away, and that you will make your schedule completely flexible to meet with them.

I’m sorry honey, but I have a pre-existing life that includes work, wellness, community involvement, friends and family. Don’t get mad at me because I can’t meet you within the first days or weeks of matching you. I’ve literally had someone un-match and unfriend me because of this. But mind you, as a busy person who doesn’t check their phone much, I would get messages like “wanna meet up for drinks,” followed up thirty minutes later by a “guess not.” And after explaining that I’m busy and have existing obligations they would get angry with me.

The second route, is that immediately they want to go from talking, to inviting you to their home or asking to come to yours – presumably (or because it is explicitly stated) to hook up. Now from time to time, sure. But I got tired of the sheer amount of people who didn’t want to go on a nice, “old-fashioned” date for dinner or drinks just to talk and get a sense for each other’s vibe.

In the universe I trust.

Now I’ve ragged on dating apps for a minute. But I will say that I know many people who have met, and are in successful relationships – even engaged – with someone they met through a dating site. Statistics show that 20% of people in relationships currently in the U.S., met online. I applaud that, and respect anyone’s decision to play the dating game field, but personally I’m on a break for the foreseeable future.

Statistically, your best chances of finding love are through a friend. In fact, 63% of married couples met this way. And despite the current going-out culture we millennials live in, only 9% of women and 2% of men meet their significant others in bars.

So instead, I pledge to continue on my path of self-improvement. In this process I meet people that I truly value, and strengthen the friendships that I already have. And by investing in myself and those relationships, I think karma and the universe will find a way to reward me when its ready.

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A Blog About Not Blogging

So I didn’t blog last week. Who noticed? After seven consecutive weeks of sharing my thoughts and opinions, I didn’t post. So today I give you a blog about not blogging.

Starting this project has been a whirlwind for me. And as an over-thinker, I ran myself through the gamut of devil’s advocate questions: why are you doing this? Do you think that you’re this important? Are people going to think you just want attention? Will people talk about what you’re doing behind your back?

I think we often ask ourselves questions like these when faced with pursing something that we are passionate about. There is a fear that our level of excitement and interest might actually become something to be embarrassed about. Truthfully, how many times have we heard people poking fun at someone for being “too into” something? How many times have we done so ourselves?

I didn’t post for a couple of reasons. One was that I couldn’t choose between a number of topics. Another was that I didn’t have any accompanying photos to use. Now both of these were silly reasons because what I was really worried about was what people would be most interested in me posting about, and that I needed some trendy picture that I liked of myself (since I had exhausted all my faux-fur coat pics).

I think in the back of my head I decided that if it wasn’t going to be up to my standards, and to some degree of perfection, it wasn’t worth posting. Reflecting on this I know that I wasn’t thinking rationally.

The Confidence Gap

Several pieces of research have shown that as compared to men, women don’t consider themselves ready for promotions, qualified enough for new jobs, think that they will perform worse on tests, and in general they underestimate their abilities.

This can have very real consequences for women. More and more studies show that confidence correlates to success just as closely as competence. For example, research conducted by Hewlett-Packard showed that women applying for promotions will only do so if they believe that they fit 100% of the job qualifications. Conversely, men feel confident to apply if they fit at least 60% of the qualifications.

As one article states, “Overqualified and overprepared, too many women still hold back. Women feel confident only when they are perfect. Or practically perfect.”

The confidence gap is formed very early in life. The Girls’ Index, published by Ruling our Experiences, is the largest national study of young girls in the United States. The report found the following:

  • Confidence declines sharply between 5th and 9th grade (over 20% drop in girls who say that they are confident)
  • 46% of high school girls do not believe they are smart enough for their dream career
  • 1 in 2 girls don’t disagree with others nor say what they are thinking because they want to be liked
  • 1 in 3 girls with a GPA above 4.0 do not think they are smart enough for their dream career

No wonder women like myself struggle today with lack of confidence and belief in their abilities. Starting in just 5th grade our confidence declines – and confidence is a huge determinant of success later in life.

Imposter Syndrome

Another concept that comes into play is imposter syndrome. Imposter syndrome is a deep-seated feeling of insecurity or self-doubt that makes one feel like they are a fake, despite there being substantial evidence to the contrary. These feelings are frequently activated after some sort of accomplishment.

Psychologists have shown that those who experience imposter syndrome often convince themselves that they don’t deserve their successes – and that they instead arose from luck or from other’s believing that they are better at something than they really are. This usually manifests through someone not wanting to talk about their successes, or not wanting to claim that they are an “expert.” It makes it hard to own titles like “artist,” “musician,” “scientist,” etc.

For example, I don’t really feel like I can say that I’m a blogger. This is only my eighth post, and I don’t have a substantial following. I could come up with a plethora of reasons to disqualify myself. A lot of times I feel like people probably think I’m trying to be an “influencer,” when in reality I’m just trying to be true to myself and learn something new. And for this I feel like a fraud. What authority to I have to put my ideas and opinions out there in the world?

Questions Answered

So I return to the questions that I posed to myself.

Why are you doing this? I’m doing this for me. For the little girl that made-believe that she was a magazine editor and who wrote chapters of books that she never finished. I’m doing this to learn and to find my voice. And finally, I’m doing this because I have seen time and time again that the things that I do give voice to, resonate with people. For me life is about human connection, and finding ways to relate with others based upon our shared humanity. So if I can connect with someone in even a small way, I feel that both of us see benefit.

Do you think that you’re this important? No, I don’t. Which I need to work on. But I do know that I need to remind myself that I am worthy, and that my voice matters.

Are people going to think you just want attention? Yes and no. I’ve had people who have expressed support, or thanked me for what I am trying to do. But I also do know people, even some that are close to me, that believe that I share too much for no reason. But what those people don’t realize, is that it isn’t about me. It’s about giving a voice to those who may not feel as empowered to speak up.

Will people talk about what you’re doing behind your back? Yes. Ironically, I’ve seen time and time again that as an individual comes into their own, and starts to feel comfortable in their own skin, someone has something to say about it. People will make fun of you because you make them uncomfortable in some way.

I think that’s just another test of faith in yourself. You gotta just keep doing you through the shade, because being true to yourself will always pay off in the long run. And if anything, at least I’m giving people something to talk about, and connect over, instead of staring at their phones.

Should I say “you’re welcome?”

The Geography of Fear

In a previous post, I glossed over the term “geography of fear.” Paradoxically, this isn’t something that is possible to just gloss over for many women, including myself. The geography of fear affects me everyday, and it’s something that is always in the back of my mind.

Woman standing on street alone in the dark.

Before I give you a text book definition. Let me tell you about something that happened to me last week that has been haunting me.

My apartment building is under renovation, which means there are numerous construction men and contractors coming in and out at all hours of the day. Typically, they go about their work without interaction – except the occasional hello. Then I saw a new face. Every time I walked through the hall, or in and out of the building, this man insisted that he either make some sort of comment to me, or try to engage me in conversation.

The first few times was okay, and came off friendly. Then it became more intrusive. Which brings me to last week.

He stopped me to ask me a question, which I entertained. But then he asked me which apartment was mine. I was uncomfortable, and didn’t want to be impolite, so I answered him, and immediately regretted it. Shockingly, I told a man that I did not know, who had been giving me creepy vibes, which apartment was mine.

I began to fear that he would come knocking on my door. Or that he would use the master key to enter my apartment. I was happy that I was housesitting for a few weeks, because the last thing I wanted to do was sleep there.

What is the geography of fear?

The geography of fear is a concept that arose from sociology and criminology studies which demonstrated that women, as a gender, are more fearful of crime – often related to a sense of physical vulnerability to men. We warn women from going certain places alone or at night, simultaneously forcing responsibility for their own fate onto them. We make assumptions about women’s lack of freedom to be in public spaces and at certain times. And that assumption is that we shouldn’t be.

My grandfather told me many times that I should not go anywhere alone. That I shouldn’t travel alone, or drive in certain areas alone. And that I especially shouldn’t do any of that at night.

woman alone in parking garage, clutching purse

I have heard these messages from a very young age, as I’m the case is for other women. I know that I have internalized them. If I see a man that I perceive as threatening, walking towards me, I cross the street. I get my keys out and place them in my fist when I walk to my car at night, then look inside my car before getting in. Sometimes I pretend to be on my phone to give the guise that I would have a witness if anything happened to me. Or I actually call someone while I walk home in the dark because I’m scared.

And I do all of this resentfully. Because I’ve watched my younger brother not have a curfew, or warrant the same concern from my parents when he’s out late. And I wish sometimes that I felt powerful enough to go where I would like to, freely. But my geography of fear might be a little more heightened than the rest.

Violence Against Women

I’ve always wondered where my generalized anxiety came from. And recently in therapy I’ve figured it out (therapy is cool).

When I was in seventh grade, my favorite dance teacher was murdered. I was extremely distraught and confused, but I was also scared. They didn’t know who did it. In fact, they didn’t find her killer for a few years. I had this sense of impending doom that something could happen to me, or someone that I love, at any time.

My teacher also lived alone, with the exception of her dog. She was a woman, alone. An an older woman, a strong woman. Yet there was nothing she could have done to prevent what had happened to her – in her own home. The majority of gun victims and sexual assault victims know the perpetrator. Someone she knew killed her.

Ever since then, my life has been marked by extreme anxiety. But a large part of that relates to the geography of fear. And the fact that even my own home could be a place that I shouldn’t be alone. I’ve struggled with insomnia for years, and the only time I’ve ever be able to sleep through the nights soundly, was when I was in a relationship.

In conjunction with other things that have happened to me in my life, sometimes I sleep with the light on. Sometimes I keep a knife at my bedside. Or occasionally, I check all the locks on my windows and doors, look under my bed, and inside my closet. Finally being diagnosed with PTSD helped me to make a lot of sense of what I was going through – and what I still sometimes fall back into.

Stay sexy, and don’t get murdered.

At the same time of my diagnosis, and my moment of clarity about the start of my anxiety – I started listening to the podcast My Favorite Murder with Georgia Hardstark and Karen Kilgariff. It really wasn’t until then that I started to feel more powerful.

Karen Kilgariff and Georgia Hardstark

A 2010 study found that women are more likely to be fans of true crime than men are. Karen and Georgia attribute this fascination as being related to a women’s desire for self defense. And I concur. By listening and learning to story after story of violent crimes against women, you learn how to (1) deal with the fear and (2) think about how you would act if you found yourself in a similar situation. The same study suggests that it is a way for women to deal with the deeply engrained misogyny in the world.

Karen and Georgia continually assert that women should fuck politeness. That we shouldn’t feel obligated to be accommodating and nice to everyone, especially when we are uncomfortable. Notorious serial killer Ted Bundy lured too many innocent women, usually by faking injury with a cast. As women we feel obligated to be helpful – but if we get a bad vibe, we shouldn’t push through our discomfort. We should say no.

Let me tell you, I wish I would have fucked politeness, and told the construction worker in my building that I didn’t feel comfortable giving him that information, and to let me come and go without interruption. But more often than not, it’s hard to take your own advice.

fists that read "fuck politeness"

Body Positive Movement

The body positive movement is starting to catch steam in the retail industry. This week I got really excited, and a tad emotional when the retail company I work for released their new arrivals online. There were two new “plus sized” models. And by “plus sized” I mean around size 8 / 10. Which, yes I’m going to out myself, is my size at the moment.

It was a bit comical to suddenly become aware of the fact that I was smiling from ear to ear at my computer screen in our work café. I definitely got a couple looks like “why is this girl so happy to be working right now?” But that’s the reality. I haven’t seen many girls that look like me at most of the brands that I like to shop.

I do think that it’s a bit crazy to be regarded as “plus size” – as of June 2018, 68% of American women wear a size 14 or above. At a size 8, or a size ten after I’ve ate too many tacos, I think to myself, “I’m still am a medium goddamnit.”  

I’ve heard both sides of the sentiment surrounding the body positive campaigns out there. For one, there is the perspective that they celebrate people who are unhealthy and encourage those individuals to maintain their current lifestyle. And in contrast, the view that retail companies are becoming more inclusive of the diversity of body types that really exist in the world. That just because you are a higher number in sizing doesn’t mean that you’re unhealthy.

Positive or Negative?

Someone close to me who has struggled with an eating disorder for a large part of their life recently asked my opinion on body positivity. She wondered why it was okay for bigger women to be body positive, but not girls who are extremely thin.

In my perspective, we live in a double bind. You can’t be “too small,” or “too big.” There is one body type that has prevailed as being “beautiful,” and therefore that body type is featured in marketing, popular media, and film. And that body type “sells.” People buy products and services that are advertised with women who fit the beauty ideal.

The problem that I see deals with visibility. Disproportionately, we are making bigger women invisible. We don’t celebrate their body type, and we don’t tell their stories. We are making 68% of our American population invisible. Hence my excitement of finally seeing myself reflected in the plus sized model at a brand that I work for, and like to shop.

I had never felt like I have the right to label myself as beautiful. And I often find myself feeling that I am invisible because of my size. Invisible to potential male suitors and therefore impossible to love. It was hard not to think that my size contributed to a partner cheating on me in the past once I knew who they had been with.

I placed my worth on my size, because that is what I have been taught to do. Girls my size play the “fat friend,” or the “fat girl” that gets ridiculed, laughed at, and left out in movies. I still struggle with this. It often feels like if you aren’t in the stereotypical version of being, “in shape,” then you can’t be successful in your life. Feeling invisible, I start to impose that on myself. I don’t order the dessert that I want, because I feel like I can’t be seen eating it.

Facebook, Instagram, and Twitter… oh my!

This is further emphasized in social media. Women report that social media, followed by TV and movies are the most impactful factors in how they view their bodies. And we can’t forget that this is starting at a very young age. The more time that young girls spend on social media, they are up to 24% more likely to want to change their appearance. They don’t think that they’re good enough or beautiful enough. And 27% will delete an Instagram post if they feel like it didn’t get enough likes.

Similarly, new research this past year revealed that 88% of women report comparing their bodies to images in the media, and 51% of those individuals think that they compare unfavorably. At this doesn’t just affect women. Sixty-five percent of males report the same behavior. And in general, overtime both men and women become less confident about their bodies.

Being Body Positive

Back to those who believe that the body positive movement is contradicting. Yes – obesity is the leading risk factor for disease and death in the U.S. But the body positive movement is not about “denying science.” We’ve been trained to think of “fat,” as “bad.” And we often either pity those of a larger size, or think of them as “lazy.” We think that they could, “try a little harder,” even while we may simultaneously applaud their confidence.

What the body positive movement is about is loving the body that you have, and treating it with love and respect. Outside of that, it isn’t preaching that weight loss is the answer to someone’s presumed unhappiness. People can be overweight and healthy. People can be overweight and happy. And people can be body positive and want to lose weight. None of these things are mutually exclusive.

But if we continue to make this group of individuals invisible, and “bad,” their self-worth will dwindle. And with it their motivation – their motivation to treat their bodies with respect and love.

Ehlers Danlos & Being Rare

What is Ehlers-Danlos? Don’t worry – we’ll get to that.

First – Has this ever happened to you? Last week I established care with a new primary care physician here in Columbus. We couldn’t finish everything that we needed to do in one appointment, so we had to schedule a follow up for less than a month later. The last thing he said to me was, “wow, you’ve got a lot of medical history for someone your age.”

Trust me sir, I know.

I’ve grown to hate doctor’s appointments, and really want to know why – at every single appointment – I need to verify my laundry list of medications? Especially when I’m usually met with a questioning glance from a nurse who says, “are you sure allllllll of these are current prescriptions?” Yes Janet, I’m sure.

I also hate the fact that all the pharmacists and pharmacy technicians at my CVS know my name, and don’t even have to ask my birthdate anymore. But, I mean, Cinco de Mayo isn’t too hard to remember.

Being 23 and living with a rare genetic condition often seems extremely contradictory to me. And I can’t say that I haven’t held a lot of resentment about that, because I have. I get frustrated that sometimes I’m too tired, or my body is in too much pain to go out on a Friday night with everyone else my age. I get embarrassed when I can’t do things other people can in the gym and that I start basically keeling over because of heart and lung problems. And it’s been hard having to realize that I don’t relate to many people in my own age cohort.

My mom has always joked that when I was a little kid I was like a forty-year-old in a toddler’s body. Ironically, today I feel like a twenty-three-year-old in a sixty-year old’s body, so that tracks well. (Moms are always right. Call your mom.)

What does Ehlers Danlos look like?

You’ve probably never heard of it. Most doctors haven’t either. But I have a connective tissue disorder called Ehlers-Danlos Syndrome, hyper-mobility type (hEDS), that is caused by genetic defects in collagen. hEDS affects approximately one in every 10,000 – 20,000 people. What is even more exciting is that my mom and I have a novel gene mutation that has never been seen before for this classification.

So, we’re one-of-a-kind mutants. (Marvel, DC, where’s my movie?) For those with EDS, or who have other rare diseases, that means that we had to fight all the harder to get the diagnosis – a common issue experienced by many living with the condition. An issue that makes it all the more difficult to get the care needed to manage the many symptoms of EDS.

Here’s a couple of symptoms of hEDS that I experience. Unfortunately, this list isn’t exhaustive.

  • Joint hypermobility affecting large and small joints (the funniest thing that has ever happened to me was having to go to the ER for a dislocated pinky toe)
  • Frequent joint dislocations and subluxations (as a result I’ve had three knee surgeries)
  • Soft, smooth skin which easily rips, tears, bruises, and scars
  • Chronic muscle and bone pain
  • Early onset osteoarthritis
  • Osteopenia
  • Gastrointestinal issues
  • Dysfunction of the autonomic nervous system
  • Dysmenorrhea and dyspareunia
  • Acrocynaosis
  • Insomnia
  • Arrhythmia
  • Intermittent migraines
  • Gingivitis
  • Scoliosis
  • Postural orthostatic tacchycardia

Being classified as a rare disease, there isn’t much awareness around EDS. And like I said earlier, many doctors are unaware of the pathology. This makes treatment hard. Instead of a holistic approach, those with EDS often must see several different specialists to treat the symptoms – not the root cause. This can be extremely frustrating in a health care system that doesn’t do a great job communicating across specialties.

My Journey

I found out that I had hEDS when I was eighteen, after my second knee surgery. And for awhile I felt like my body was working against me. I had been dancing since I was five years old, and my dream was to move to California to become a professional dancer. I wanted to be on So You Think You Can Dance, and then hoped to tour with a musician or land a gig on Broadway.

Image of dancer with text that reads "Born this way? do tell." Hypermobility is a major advantage when dancers first take to the barre. For many, this is a gift. For others, hyper mobile joints are the beginning of a lifetime in pain.

So at eighteen, I was crushed. I felt defective, and being in competitive dance, I had fallen so far behind after my surgeries, that I couldn’t catch up to the rest of the girls my age – not to mention there were certain things that my body just wouldn’t allow me to do.

As I’ve gotten older, and went through my third surgery this time last year, my perspective has definitely changed. Now I see my body as incredible for having the ability to get back up time and time again. I began working with a personal trainer to learn how to weight lift, because I want to see what I am truly capable of. But it took me a really long time to get to this place.

And the battle isn’t over.

As I’m nearing my mid-twenties, my mind is starting to think about what’s next in life. I’ve always wanted to have a family. But I know that many with EDS struggle with infertility, and many have complications during birth. I also want to be able to be active with my children. For me that all means having a family sooner rather than later. And let me tell you, my body knows it – hello baby fever!

And in a time where people are getting married and having children later and later in life, here I am again feeling out of place with people my age.

But despite always feeling out of place, and occasionally being frustrated with my genetic makeup, I’ve learned a couple of great things being a mutant – things that I think all people would benefit from:

1. Be present.

I’ve come to really appreciate life and the time that I have with the people that I love the most. It’s painfully cliché, but you really never know what life is going to throw at you. Put down the phone, turn off the TV, don’t worry about taking pictures. Just soak it all in.

2. You have the power to choose your obligations.

Our most valuable commodity is time. Don’t spend it doing something that you don’t want to be doing. Don’t feel like hanging out one day, that’s okay! Be honest about it. Sometimes you just need to lay on the couch with no pants on eating ice cream out of the container.

3. Toxic people are toxic, no matter the relation.

Unhealthy relationships aren’t good for your physical health either. The ones I’ve experienced, actually make my pain worse. Either make less space for, or get out of toxic relationships. And that extends to family, too. If a relationship is unhealthy, it’s unhealthy. Period. Don’t feel guilty about needing to set boundaries, most likely your guilt doesn’t fit the facts. (See number two)

4. You are stronger than you think you are.

Sometimes things feel and sound like the end of the world. But they aren’t. So many times I thought that I was done dancing, but every time I have found a way to keep it a part of my life. I just needed to expand my understanding of what dance was and my understanding of what I was capable of.

Image of girl pulling the skin on her face that read: Ehlers Danlos means we are fragile but unbreakable.

5. Humility can move mountains in relationships.

When you’re 23 years old and your mother has to help you shower after surgery, this is what you learn. Being able to ask for help and being able to admit when you are wrong is not easy. But doing so builds connection based on shared humanity.


I must be getting better at this, five points is a more presentable number than the 9 tips I gave in my blog post two weeks ago. Thanks for noticing.  

All of this is to say that today, I wouldn’t trade my lengthy medical history for anything. It has made me into the person I am today, and taught me to take control of my life. It doesn’t define me, but it lifts me up and pushes me forward.

Illustration of a photo of Diana Muzina, with a shadow made of zebra stripes.

The official mascot for rare diseases is the zebra. And today I can say that I am proud of my stripes.

Help me to raise awareness by sharing this blog post and tagging #EDSAwareness.