What resonates with me most about this session is how similar our stories are in the intersection of disability. This person has PCOS, endometriosis, arthritis, Bipolar disorder, and a slew of other disorders connected to the psychosomatic pain it causes them. They’ve also survived abusive relationships, sexual abuse, parental abandonment, being a child of an alcoholic, and the hell storm of symptoms all of those things cause in a person.
I relate because my disorders are also caused by similar beginnings. I was raised by four alcoholics. My parents divorced very young, I was only three when my Father was kicked out of our home for throwing plates at my Mother for not having his dinner warm enough or his clothing ironed. I was shoved into the pavement as he walked past me to leave and not really want to come back. I feel the abandonment she speaks of, to a far lesser degree, but at three…your Dad is your Dad. So when he leaves, and hurts you on the way out, you feel worthless. Even as a child. Tears still roll down my face as I tell this story, even just writing it out in a blog. It’s triggering to have the flashbacks. And to feel like I was nothing to him for so long.
But we can’t always get what we want from the world. I’ve learned that sometimes, given the actions of others toward ourselves, we must cope and move along. Nothing can change what happened to me, or to this person. But we are better, stronger people now. Much smarter, braver, and sure of ourselves. I wish that for everyone without the trauma it takes to get there. But if I’ve learned anything in this activism fueled adventure of a life I lead; it’s that those who experienced the most pain are, socially, the smartest people I know. We survived.
Be Kind to Yourself,
What’s your level of self-esteem right now? 1-10?
Um, it’s never very high…so I’d probably give it like a four.
What made you want to do this project?
I was doing burlesque. I started doing it fresh out of treatment for an eating disorder and all my mental stuff. I was terrified of it before but it was something I wanted to do. I got on stage, and it was amazing. It really boosted my self-confidence. And now I want to do things that terrify me.
So this project terrifies you?
Yeah! Haha. Not as in, what a bad and scary project. But it was like, in a lot of my previous sexual experiences I was like…”eeeeeeehhh don’t look at me” but now; I’m going to be looked at.
And now, you’ll be forced to look at your nude body from a completel non-sexual standpoint.
Yes. I have a very weird relationship with my own sexuality. It being from a non-sexual standpoint doesn’t bother. It’s more so like, you putting it on a website where everyone else can just look at me. And I can’t control that.
But it’s also going to be super empowering because the jig is up. Everyone will know exactly what you look like underneath what you do to present yourself for society.
I am very excited about that! I spend so much time hiding myself, even doing burlesque. The hair, makeup, perfect poses. It’s so controlled. I’m used to being controlled in my movements. It’s nice to see what I’m like when I take that all away.
Are your nervous?
Yes! Hahaha. It’s just something I’ve never done. I’ve taken my own nudes, but even in that…I can take a hundred and if I’m lucky…I get one. I tend to be a perfectionist or I give up. This is something I cannot give up. I have no control over these photographs.
It’s radical, and somewhat forced, acceptance of your own body.
How would you rate your self-esteem now?
A little higher! The highest it’s been is a six, it’s definitely a six right now.
Relaxing a little bit, I don’t do it very often.
Like taking care….of youuuu? Self care?
Maybe. I should do that more often…just maybe.
What are your greatest life struggles right now?
Definitely resurgence of a lot of my eating disorder tendencies. As well as my bi-polar disorder and PTSD. Which I’m focusing on now in therapy. As well as a panic disorder, and a lot of physical conditions. And grieving over the loss of friendships and my grandfather.
My grandfather was really important to me. He was one of my best friends. It was painful to lose him.
Yes, I think he was more of a parent to me.
My parents were there, it’s not like I grew up an orphan. But they were not ready to be parents. They were both drug addicts. My father an alcoholic, my mother severely mentally ill. There was never really any focus on their children. I have an older sister, lost my younger brother. Seeing my grandparents….they always gave me and my sister the upmost love a child could receive. They taught us some things that children need to know growing up.
Tell me more about your relationship with your grandfather.
This story captures it perfectly…
When I was really little my parents would tell us they loved us, but we never felt it. My grandfather never told me that he loved me, or my sister. One day, I freaked out and threw myself on the ground and asked him why he didn’t love me. He picked me up and said, “Of course I love you, it’s my actions that tell you I love you” I didn’t get it now, but as I grew up he said it frequently to make me feel loved. I saw him one last time, and he said, “Don’t worry baby, you know I love you, I’ll see you soon.” But I never saw him again. He died of cancer. I never questioned whether he loved me again.
What goes into your self-esteem?
Definitely my body image, what’s happening in my life currently. One of the things I often do is turn emotional pain from an event into pain against my body. Because it’s easier to cope with than focusing on that event. And how I feel about my personality goes into it as well.
Can you give me examples of those things that’s happened in the past?
When I got out of that abusive friendship and relationship; I couldn’t understand it all. When I cannot understand something, it was easier to blame my body than deal with those things. When I lost my grandfather, even it didn’t make sense, I turned my loss of my grandfather into body hate. That’s what I naturally do.
How was middle school for you?
I went to a catholic school and it was a really crummy experience. I used to faint a lot and we could never find out why. Kids would say that God hated me. And that’s why. As a young kid, that means a lot. It was a break your knees type of school. God hates gay people and stuff. And I was a bi-sexual so….there was just a lot of teasing and it was not a fun time.
I think a lot of parents undermine their children’s feelings and belittle them when it comes to other kids bullying at school.
I never really went forward and told my parents. Rather, I would get so much anxiety and I’d miss school. I’d worry myself so much I’d miss school. My grades dropped, my teachers…and both my parents among others said I was faking it. It just wasn’t very good…and it felt really bad. That’s when the eating disorders started, and bipolar was diagnosed. Nobody understood and I wasn’t willing to talk about it a lot.
How do you think other parents can avoid this happening to their children when they experience similar things?
Modeling is really important to children. I’ve taken a lot of psych classes specifically for children. Modeling is key. Parents will be telling their kids these coping mechanisms of “turning the other cheek” or “that you’re beautiful despite” and see their parents exemplifying the opposite…it gives mixed messages. Model the behavior you want your children to see. Don’t assign it, model it too.
A lot more attention needs to be paid to children’s mental, that’s for sure.
Even thought people take child development, we all forget it. Everyone thinks children don’t remember, they don’t get it, they don’t understand. But they do. I’ve nannyed so many girls and boys and kids and they all do. Kids know when you’re upset. One day I came in and I was visibly off my game and the little girl I was watching came up to me and smashed my face between her hands and said, “I WILL LOVE YOU UNTIL YOU DIE”. And that was really helpful for me.If they can pick up on those cues, and have a deeper understanding…we should be able to pick up their emotional cues and have a deeper understanding.
How is your relationship with your parents now?
I do see and talk to both of my parents now. But it was never a full relationship. My father an alcoholic, my Mother mentally ill, and them hating each other was a volatile environment. They met and got married because my Father was her drug dealer and he knocked her up. They do think there was love at some point, but I don’t think it was what it should be when you raise children.
His alcoholism fueled her addiction, which fueled her mental illness. It all came down to a day when she thought he stole the prescription pills she was addicted to. She just forgot she took them all. He locked her out, and when she got back in she had a lighter and a gas can. She said.
“You took away the only thing I love, so I’ll take away the only thing you love; your children”
And you remember this?
Yes, I was very young. I don’t really remember the aftermath of her getting arrested. I don’t remember her even being away too long…but each time she got arrested I still thought she was the good guy. She always told me it was my Father that caused everything. His alcoholism was bad, belittling…but you can’t excuse trying to kill your own children. He degraded her, she degraded us, and she’d take us to hotels where she’d meltdown and tell us she wants to kill herself.
How do you feel about it today?
I don’t blame my parents fully but I do think they had a hand in the development of all my eating, anxiety and bipolar disorders. And being in so many abusive relationships.
My father acknowledges it but he doesn’t. It’s like an elephant in the room. His one acknowledgement was, one day, in the car, he cried for five minutes and cried to me about how sorry he was. Because my Mom ran away with a new family. But we still don’t really talk about it…we work together. Everyone at work knows, but nobody really talks about it.
What kind of physical conditions do you have?
The eating disorder really messed up my insides. I’d go back and forth between starving and purging. So I greatly messed up my digestive system. I have the arthritis going on, which may be caused by the eating disorders. I have a bad immune system, one year I got mono and pneumonia in a few months span. Anemia. And then I have a whole host of reproductive issues. Endometriosis, Adnomyosis. Which is a condition which the lining of the uterus grows into the uterus. Which prevents childbirth. I also have PCOS.
With all of that, it’s funny because, I have two giant overies. So I could have as many kids as possible.
How has your chronic pain affected your self esteem?
It definitely makes everything really difficult. It constantly feels like you have something wrong with your body. I look at all the things my friends can do…and I can’t do them. It feels crummy. It’s the physical pain, but the emotional pain they cannot understand. I have a headache, and they try to tell me to just stop it. And then I spiral into how I cannot actually do that. I think physical pain gets very tied up into emotional pain, so it’s harder to work through for some. You can take medication and be fine if you only struggle with physical pain but when it’s a disorder thats sensitive to your other mental disorders…it’s not easy.
How do you cope?
I’ve formed a lot of really great relationships. I went to breakfast recently with a good friend and her new partner. Who is the bees knees. But when we started talking about our past relationships, I began to talk about mine. When I get nervous, I can’t stop talking. So I mentioned the time my ex had sex with me when I was unconscious and it really bothered me. I never called it rape or abuse. This guy said, “isn’t that rape?” and all of my physical symptoms and mental symptoms just stopped.
What other non-conscensual experiences you had?
My old roommate, who was having a secret relationship with my boyfriend at the time, started to get really manipulative and abusive. One of her ways to control the situation was to convince me we should have sex together. So she could have sex with him. I explained I wasn’t comfortable, I really was not okay. Her premise was, “What if I’m gay and I don’t know it? I love you why don’t you sleep with me?” I explained it wasn’t working that way and she coerced me to do it. I felt so physically ill afterwords.
From then on, any girl who put physical attraction on me I felt incredibly pained to the touch by them. I’m still trying to accept it, but my therapist tells me…reminds me…that it’s abuse. That this is sexual abuse.
Women rarely talk about when women assault other women.
The fact that they might see this…is one of the things that freaks me out the most. But I also feel like if I don’t talk about it…I’ll never be able to talk about it. And like you just said…I don’t know how many people talk about this. But if they see that what they did is wrong, it could stop further assaults.
How did that relationship pan out?
I obviously broke up with the boyfriend. I kicked the girl out. Before she left we had another interaction. She had planned an intervention for me, regarding him abusing me, and I asked her, “What makes you think he won’t do what he did to me, to you?” and she said, “Because I’m not like you. He’s not a rapist.” And this was after me finding out he assaulted one of my other friends girlfriends.
Do you think there was any good in him?
I think there was a good person, but when he started drinking and doing cocaine and heroin….it warped him. He can’t take that back. I hope he, one day, does realize, that there is so much not okay with what he did and said to me. I still hope, even though his new girlfriend is okay with it, that HE gets it’s not okay. He furthered a lot of my body image problems.
What do you wish more people know about living with chronic pain?
I wish they understood that there is a lot about the pain we cannot control but there is also a lot we can do. I wish people understood that they shouldn’t try to take it from us. Don’t make us feel powerless. I am in control of my body, I know my limits, listen to me when I reach them. But don’t make me feel like it’s this wild warlord dictator when it’s not.
And that’s 100% part of how to treat someone with chronic pain correctly. I’m also going to add that people should assume the opposite either. That we don’t we don’t want help, because we want that control and simply lack it at times. We need understanding at that time, not judgement, because we already judge ourselves for what we cannot do.
I think that’s very true. It’s nice to have help with anything. Like moving a table, or not being able to get up physically. A lot of people intertwine being helpful and unhelpful with control. Like, help me up but don’t keep taking me with you after that.
I feel that so much when I’m going up stairs really slowly, and the person behind me tries to like…encourage me by putting their hand on my back. When really, that’s just kind of to make them feel better and creates this really awkward situation where someone else touches me without permission. I’ll get up the stairs at my own pace. Be kind about that, you know? Haha.
When I was going through the worst with my reproductive issues, I was a dog walker. And it affected that greatly. My boss was trying to be understanding and she was really into homeopathic methods. She’d try to give me things, and keep pushing things on me. Which works for some but not for me. I just had to put my foot down and say, “Thank you but no thanks! I know this helps you, but it doesn’t help me!”
And I think that’s one of the most important things about being a person in someone with chronic pains life. Being able to understand when your suggestions aren’t necessary, and thinking twice about the things they may have already tried given how long they may have had their condition.
One of the crucial things here is sympathy versus empathy. Sympathy makes others feel bad, while empathy is like, “Wow that sucks, let me put myself in your shoes to help you feel less alone.” Empathy helps others not throw out those million not so helpful suggestions out there and just accept others circumstances.
When you become ill, those around you who care want to heal you. Because that’s what we’re told to do when people are sick. It’s hard for people to stop and understand the context of the chronic long term or permanent disease. And how specific treating it can be. That you have to accept you simply can’t cure some people. And to try and do so fights against a part of their identity and invalidates their ever shifting identity struggles. It defines us as something that needs to be fixed rather than accepted. And accommodated.
Definitely. I feel like it’s almost insulting. I’m not okay with these things. My eating disorder, my endo, my arthritis….will never go away. I can manage it, but it’s a part of me. And if I’m going to like me, I have to accept that. So for someone to try to cure me, it feels like their preventing me from accepting it myself.
Which is why hearing people discourage me from labeling myself as disabled hurts a lot too.
There isn’t anything wrong with being disabled.
I personally don’t consider myself disabled, despite the breakdowns….because I can still have two jobs and go to school and see my friends. I’m very privileged. While you had to stop working. When you’re disabled, you have to stop doing a lot. That label makes sense to you. People say rapists are the guys in the alley, and being disabled is being the person in the wheelchair. But it’s not always that way. A lot of times it’s not the guy in the ally, that person is not always in a wheelchair. But they’re still disabled. We don’t see cancer but we give them a lot of empathy.
The comparison of “Oh well it could be worse, you could have cancer” always pisses me off too.
Being a nanny, I found that; yes, it could always be worse. I used to tell off parents who invalidated their kids for crying over a stubbed toe. I say, why shouldn’t they cry? That’s the greatest pain they’ve felt. Yeah it might suck more not to have a roof, or be homeless, but I don’t know that pain. So I feel what I feel to the fullest extent. You can acknowledge that things could be worse, but it doesn’t stop you from feeling the worst you’ve ever felt.
Do you have a message for the audience?
Talk about it. Be emotional or notice physical pain. When you don’t talk about yourself, you reinforce the “let’s not talk about it” and “ignore” taboo surrounding those topics. It gets worse. People said I was attention seeking, a child, and that I need to get over it but…if I don’t talk about it I may never talk about it. I could never help someone else avoid the things I didn’t see when I was in an abusive relationships. If you don’t feel ready to talk, give yourself time. But even when there is a tiny bit of you that wants to talk about it, try it. Give it a chance. I don’t know where I’d be if I didn’t talk about it. Talking about it gets me closer to figuring things out.