Patient Perspective: Living Under the Stigma of Having an Invisible Disability

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Patient Perspective: Impact of Self Stigma on Recovery

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Patient Perspective: Living with Binge Eating Disorder

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Patient Perspective: Self Advocacy in Mental Health

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Patient Perspective: Wellness Strategies for Recovery From Mental Health Conditions

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Recovery Is Being My Most Authentic Self

When I started my advocacy it was behind closed doors as a facilitator for NAMI Connections. It was the only place I felt completely safe to open my fence to allow a select few to come in.

I had been told I was a valuable member of this group, but my value was in large part because of this group. Open dialogues about mutual struggles. Learning productive ways to cope through our challenges. But more than anything celebrating one another’s triumphs.

Recovery victories come in all shapes and sizes. They are all worth celebrating. They are all worth us taking a moment of pause to recognize we did something we once thought we couldn’t.

In my advocacy I find myself surrounded by others in recovery. We all have our own journeys that we take at different paces through different terrains. Sometimes our paths even intersect. Other times they’re miles apart.

My journey isn’t yours and yours isn’t mine.

The day someone told me in a Connections meeting that I looked like I had it all figured out, I had never felt more like a failure.

If I am making my own recovery present as shiny and easily attainable then I am clearly doing something wrong. More than anything I’m doing a disservice to my peers creating unrealistic expectations that will most likely damage their own recoveries. Sending this message that I did it and you can too, you SHOULD be able to.

Recovery is hard. Recovery is ongoing. Recovery is not linear.

Recovery is all about looking in that mirror when all I want to do is look away. Accepting the reality of who I am, especially the parts I don’t like. Looking at my battle wounds to understand what lessons I can learn from them. Finding comfort in my discomfort.

Along the way I learned my top value was Authenticity. The root of the greatest pain in my lifetime was when I acted in opposition to that. It was always out of fear that my most authentic self wouldn’t be accepted or would be attacked. And both happen all the time.

Recovery for me is making that choice in every moment that it presents itself; to be my authentic self or be something I’m not because that’s what others want of me. To appear as that person who figured it all out, or admit everyday is a struggle in some way.

The day a childhood friend I had always envied for their perceived perfection messaged me and said “me too” I had never felt more of a success. Showing my hardships somehow made others feel safe to show theirs.

To stand in front of everyone saying I am no better than you, I am you. I definitely don’t have it all figured out. Maybe a little bit and honestly some of that is probably not quite right. But I’m okay with it. I still have so much personal growth ahead of me which is both daunting and exciting.

I’m learning my recovery and my value is not necessarily in what I give to others but in how they have made me feel safe enough to break down my fence and allow everyone in.

For this I thank you.

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Discretion doesn’t bring change

Originally published in The Island News on January 5, 2022 https://yourislandnews.com/discretion-doesnt-bring-change/

“I am close to autistic people and others with ailments similar to yours and none of them draw attention to themselves the way you do on a daily basis. 99% of the comments you get are positive but I can’t bite my tongue anymore. There are other/better ways to bring awareness. You can take action and change yourself but be a little more discreet.”(DV)

This is a comment in response to one of my advocacy posts, made by someone I had considered a friend.

I used to be more discreet. Most people in recovery still practice discretion. They privately share stories of their self-loathing, shame, and feelings of personal failure.

Some seek treatment, but most never do. Many will never even step into an environment full of peers for fear of being “found out.”

My former friend’s words, while directed at my own public advocacy, could apply to any group of marginalized people.

The LGBTQ+ community living under a “Don’t ask, don’t tell” policy. They can take a bullet for their country as long as they stay discreet about who they are.

Discretion would mean hiding the partners of your choosing, staying compliant with traditional gender roles, and being quiet when you see injustice among your peers so no one finds out you’re like them. Discretions means living a life against your will chosen for you by people who are not you.

Survivors of domestic violence and rape are always the ones put on trial when they do try to share their stories. Nobody wants to hear what they have to say because it’s ugly, painful, and “damages” the reputation of those who committed the acts of violence.

Discretion means not pursuing legal action when their rights are violated because unfortunately when this is done it’s always going to be public. Discretion means to not leave abusive marriages or take your children away from an unsafe home because other people will find out.

Pre-Holocaust, the Jewish community was told to be more discreet. If they blended in, practiced their religion in private, and even changed their names, they were far less likely to be targeted. Discretion meant they could survive, but never thrive within their communities.

Discretion stigmatizes. Discretion stifles. Discretion kills.

There are so many brave soldiers sharing the pain of their journey in hopes of creating triumphs among their communities. Being discreet would have meant no Women’s Rights Movement, no Civil Rights Movement, no LGBTQ+ movement, no Black Lives Matter movement, and countless others.

Discretion doesn’t ignite change. To be asked to be discreet is to be told you should be ashamed of who you are and what you are going through. Discretion isn’t for the person forced to practice it, it’s for making everyone else around them feel more comfortable.

I hope someday when the neurodiverse people in my former friend’s life decide they want to share their journey and join the movement, he doesn’t respond by telling them they should be more discreet.

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The seed is my responsibility, not my fault

Published in The Island News https://yourislandnews.com/the-seed-is-my-responsibility-not-my-fault/ on Nov 3, 2o21

February 4, 2015 was the last time I went inpatient for my mental health. This time I realized that dark place I had fallen into. I made the very difficult decision to get the highest level of care available to me. 

That was almost seven years ago. Since then I have been in and out of therapy, hopped back onto the medicine merry-go-round, and even sought out some experimental medical treatments. 

As you can imagine my recovery has been a bit of a roller coaster. Honestly, to some extent, it always has been. 

While having mental illnesses is in no way my fault, managing my mental illnesses is my responsibility. Taking my medications as prescribed, having an open and honest relationship with my treatment team, seeking out resources, and effectively using my supports. 

“Mental illnesses are medical illnesses that may have environmental triggers,” according to the NAMI Principal of Support. 

To me, this means there are some things beyond my control. 

This scares me. 

The possibility that my medications may stop working one day. I may lose access to my resources. My therapist that I deeply trust may leave her practice one day and I may struggle to find someone who can help me the way she has. None of these things are a guaranteed staple for me. 

Seven years can mean I’m running through a beautiful meadow with hidden landmines. 

There is a seed of fear within me that I live with each day. There are times I’m blindsided by a trigger that snuck past my barricade of defenses. The seed sprouts. Other times I’m living my best life and the sprout gets squashed. 

But, … the seed is still there. 

Seven years doesn’t mean it’s gone away completely. 

I try my best to not let this fear consume me. I still seek out the things that bring me my greatest joy. However, it would be irresponsible of me and detrimental to my recovery to pretend the seed isn’t there. 

In the past seven years I’ve found myself in some challenging times. Thankfully none of them have brought me back to where I was in 2015. The nature of my mental illnesses, the hard truth, is that the possibility is always there. 

Today was a pretty great day, but tomorrow may not be.

My recovery means examining all my emotions and behaviors. Was my reaction appropriate to the situation? What was the motivation behind the choice I just made? Is this a bad moment, a bad day, or is this the sign of something bigger? 

My self awareness is essential. I need to be 100 percent unfiltered and honest about how I’m doing at all times. I can’t hide it from any of my supports. Above all that I can’t hide it from myself. 

I didn’t plant the seed. I didn’t want the seed. I never asked for the seed. Yet there it is. Seven years ago and seven years from now. Having this seed is not my fault, but the seed is my responsibility. 

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Here’s Why The ‘Victim Mentality’ Is Actually A Myth

Originally published on Thought Catalogue https://collective.world/heres-why-the-victim-mentality-is-actually-a-myth/?fbclid=IwAR2IKdB4p6286BhSDOEn9thHQN_2lxEZ101rosDN7e18tAFtw-Dzz51rb6k

on Nov 11, 2021

“People only treat you the way you allow them to.”

I remember when I started believing this. It was probably some therapist’s attempt to help me self-actualize. Taking responsibility for my role in all the ugly things that happened to me. It was supposed to make me feel so empowered. Congratulations, I was no longer stuck in victim mode.

Except that I still was. Embracing this belief that I was mistreated because I allowed others to mistreat me is inherently wrong. It’s victim blaming. It’s scapegoating. It’s shifting the responsibility of an abusive situation from the abuser to the abused.

It’s bullshit.

What was my role in what happened? I was the punching bag. I was the doormat. I was the one expected to glue back my broken pieces so they could be shattered again.

And again.

And again.

You’re probably thinking I’m playing the victim here, but I’m not. I WAS the victim. A person who crawled out of one abusive situation right into another as I attempted to stand on my wobbly legs.

Sometimes what hurts us makes us stronger. We do gain a sense of power. We chant “Not me! Not ever again!” Some of us can live that truth. Some of us can’t. Maybe some of us never will.

I think I’m somewhere in between all that. Some past traumas still wake me up in the middle of the night. I scream, shake, and feel like I’m back in the middle of my own personal war zone. Sometimes there are beautiful moments where I feel I came out the other side.

Do I want to hurt? No.

Do I think I repeat harmful patterns? Yes.

Should I know better by now? Maybe.

Is it my fault? Absolutely not.

I’m kind-hearted and naive in a Disney Princess kind of way. I’ll trip over a rock and apologize to the rock. Yeah, I’m that type of person. This makes me an easy mark. Always has. And since this is the very nature of who I am, I’ll always be an easy mark.

I’ll believe that employer yelling at me in front of a room full of coworkers and customers about how stupid I am. True story.

I’ll believe the romantic partner that calls me selfish because I requested some affection and attention. That happened too.

I’ll believe the friend that tells me the limitations from my disabilities are something of my own making. It’s been said repeatedly.

The “Victim Mentality” is a myth. At least, the way it’s presented. I’m supposed to take responsibility for how I was abused and immediately cauterize all my wounds. I’m supposed to embrace that I deserve better. I’m supposed to make better choices so that I will never end up in an ugly situation ever again.

I have the power to ward off all impending evil. And with great power comes great responsibility.

This ugly situation only happened because I allowed it to. I set the table, prepared a five course meal, and invited the pain/humiliation/trauma into my home. Then I gave them their own key so they could come back whenever they wanted.

If anything, my reality is that I don’t want to invite anyone into my home. I no longer feel safe there. Or anywhere. Not entirely.

When you blame me for the abuse others inflicted on me, you have now made me the villain. You make excuses for the other person. You diminish my pain. You shut me in a room with no sunlight, oxygen, or water while expecting me to bloom.

I didn’t ask to be a victim, yet there it is. It doesn’t mean I’m weak or at fault. It does mean something malicious happened to me and I’m finding my own way to survive with it.

People treat me the way they allow themselves to. Their choice and they don’t need my permission.

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This Is Me Choosing To Accept My Body No Matter What Size It Is

This was originally published on Thought Catalogue https://thoughtcatalog.com/laura-kaponer/2021/03/this-is-me-choosing-to-accept-my-body-no-matter-what-size-it-is/ on March 25, 2021

Trigger warning: Eating disorders

2013, the year I was beautiful. Or so they told me.

I was in my smallest body, and to me this body had magical powers. This body, unlike all the ones before it, could walk into any clothing store to find unlimited options. This body could attract any lover I wanted. This body meant men fought over who could hold the door for me. This body was invited to all the coolest places by what I thought were all the coolest people.

This is what I had been waiting for my whole life. This was the destination I had been crawling on bloody knees to get to since I was nine years old. This was where I was promised love, acceptance, and opportunities my larger body had never been worthy of.

I was wrong.

I remember pushing myself on the treadmill well past my pain and exhaustion threshold on an injured hip. The guy next to me, someone I was trying to impress, told me I could stand to lose another 10 pounds. At that point, I honestly didn’t have 10 pounds I could spare, but I believed him, so I kept on going.

I would go to any length to avoid being “that girl” again, the larger girl. The larger body that had doors slammed in her face. The larger body that her childhood peers repeatedly told her was ugly, wrong, and unlovable. The larger body that had painful limitations placed upon her by those around her. I lived in constant fear of becoming “that girl” again.

You can absolutely receive positive reinforcement for negative behaviors. I know I did. The more harm I caused myself through deprivation fueled by guilt and self-hatred, the more praise I received. It wasn’t necessarily my methods that received praise, it was my results. I wanted to hear “good girl” as often as possible.

2020 was the year I knew I wasn’t beautiful anymore. Or so they told me. My body morphed at a rapid rate from smaller to larger. My binge-eating disorder was angry with me for neglecting it, or at least trying to. Really, it was a poorly crate-trained animal that wreaked havoc more often than I’d like to admit.

Potential romantic partners evaporated. The clothes in my closet screamed at me in horror. People with disgust on their faces asked,”What happened?” I was strongly encouraged—no, pressured—to do whatever I had to do to be smaller again. A smaller me was the preferred version of me.

I cried myself to sleep blanketed in my failure to live up to what I was expected to be.

2021 was the year my beauty stretched beyond what I ever dreamed it could be. I broke the cycle of placing the entire worth of who I am in the size of my body. And I refused to let others do it, either.

This was no miracle, this was hard work with professional intervention. This was me saying I can’t keep hurting myself to please others. I can’t make my self-acceptance dependent on my body size. I can’t deny myself the life I want to live. Those people who reject my larger self are simply not my people.

I am learning health, wellness, and joy can be achieved at any size. My larger body finally coordinated with my larger personality. My personal freedom is the most delicious thing I’ve ever tasted. If you’re wondering, it tastes like Haagen-Dazs.

I’m under no disillusion that my battle is over or won because it’s ongoing. The damaging messages about what beautiful should be haven’t gone away. I don’t think they will, at least not in my lifetime. And no matter how far along in my recovery I am, I will never hesitate to stop to help others in theirs. My voice, our voice, needs to be louder than the one trying to beat us down.

I’m done being quiet. I’m done feeling less than because my body is more than.

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