Monday, February 4, 2008

A letter to non-panic disorder people

Reposted in its entirety with kind permission from the author, aidenraine:

Inspired by guppygrrl's post about "chronic pain" though I'm not comparing the two, though I did take on a similar "writing style". Some of this is based on things I've read, bad stories other people have told me about how they've been treated with their panic disorder (I moderate the lj panic community) and not necessarily things that have happened to me.

Dear non-panic disorder sufferer,

There are some things I want you to know about me and my condition.
I am not necessarily shy, that's not what having a panic disorder is. I am an outgoing person who often feels trapped inside a wall of fear. I get really angry sometimes because what I feel like is the real me is trapped behind my anxiety. I probably want to be affectionate and laid back and fun at any given time but you make me nervous. It's not your fault, it's just people- it's nothing you do or did. I can only become desensitized to people by spending a lot of time with them and even then sometimes it doesn't work. Sometimes, with some people, it works right away.

I know that what I'm afraid of isn't real. I know that the threat is an illusion and that I'm not really going to get hurt, but my body is telling me otherwise. I try to talk myself out of it but "fight or flight" is one of the most basic and powerful instincts of the body, and it doesn't always listen.

I am working really hard to combat my anxiety disorder. Some days I start to give up because I've been fighting for so long and it doesn't seem to change, or I make progress and then I backslide. It's inevitable that I get depressed and may not seem to be working to help myself. Having an anxiety disorder is really hard and I promise I'm doing what I can. Much of the fight that goes on with my condition happens inside the head, so while it might not seem like I am trying to help myself, I am.

I am constantly exhausted. If your body went through intense terror each day (or sometimes, just from time-to-time) and then crashed, you'd be exhausted too. I have to make myself move when I am crashing and sometimes I just have to sleep. My body doesn't present that as an option; it's just an order- "You. Sleep. Now". Sometimes I don't get things done because I am tired. Please don't get mad at me if I don't always do everything I am supposed to do- it can be a real struggle to do little things that most people don't think twice about, like walking into a store, running errands, sometimes even leaving my house.

Some of my behavior might seem pretty odd at times. I might make someone go with me to places I ought to be able to go to alone because I need a "safe" person there. I might come off as clingy and dependent on others, but my reasoning is not what you might assume- "safe" people are our anchors to sanity. Real or not, we assume we can count on them to help us if we become terrified, and that can make the difference between fleeing a place or being able to stick it out. We develop triggers in specific places and that place, as innocuous as it might seem to you, scares me to death. I don't want to feel that way; it's embarrassing, but I do. How would you feel if you were terrified out of your mind in a place or around a person you know is harmless in your heart?

I try many things to combat my anxiety. If you've heard about a technique, I've probably heard about it. I've tried meditation, yoga, acupuncture, keeping active, positive self-talk, cognitive behavioral therapy, regular therapy, and medication, among things. I've probably tried lots of different medication. Anxiety disorder (and depression, since the two are linked- you'd be depressed if you had an anxiety disorder) often get treated with strong medication, and strong medication has side-effects. When I am trying new medications I might be "off" and irrational. Please forgive me, it's not me, it's the meds. Also, some meds make me extra tired or dizzy or any number of other things that aren't my normal or desired state. Most medication used to treat anxiety is something the body becomes immune to over time, so the dosage must be increased. So, occasionally I may relapse when I am not expecting it. I don't necessarily know the cause.

Please don't make fun of me when I am experiencing a panic attack- it's horrible enough without you ridiculing me. You wouldn't be laughing if you were the one whose body was revolting in fear. I'm not making anything up, I'm not trying to use panic attacks as an excuse not to do things, and I surely don't want to be a burden on you or effect your life negatively. Knowing I sometimes am and sometimes do adds to the misery of the condition. What I really need is for you to let me hold your hand or your arm tightly at times, and to humor me and just tell me it isn't real and I don't have to be scared, even if it's the millionth time you've said it. Tell me you'll protect me and I might just believe you, because I want to so badly. I want to be tough and independent and in control, but something (psychological and chemical) inside of me won't let me be free.

Panic disorders are almost always genetic and are chemically related, though they're often triggered by a traumatic event. Before realizing what is happening to us, most panic disorder sufferers go through a terrible period of thinking that we're dying when we're having a panic attack, or that something terrible is about to happen to us, etc. It's impossible to understand when it first happens, unless someone is there to warn you. There usually isn't.

Many of us live in terror of letting other people know we're freaking out, so while we might seem normal, in control, and calm, our insides are often a different story. It's ok to tell us we seem stabler or more confident- we'll appreciate you noticing. Just know that sometimes it might be an illusion, sometimes true one day but not the next. Acting like it's a result of something we didn't do is a double-blow, the first one being our own senses of failure for not being able to just "tough it out", "grin and bear it" etc.

Sometimes, just walking into a room by ourselves is the accomplishment of the day. Sometimes, we could lead a parade. Please, give us the credit for living with something so tough and managing to do anything. Please, just support us and help us, and listen to us. It's natural to get annoyed sometimes, but if you're annoyed, we're probably beating ourselves up because we're a self-critical lot. That's part of how we got this way, by being too self-aware.

We are trying to win the battle, but some days we just want to give up.

Thanks, and we love those who help us,

Your friend with a panic disorder


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Morte said...

thanks for sharing this. my anxiety is mild compared to that of many but it's still a huge issue in my life and one that it seems is going to cost me a friendship. a friend of mine who KNOWS how i've been struggling with it for the past year + is saying i blew her off etc etc over a series of months...when i spent more time with her than any of my other friends...

Sarah said...

Thank you so much for sharing this. I have a sister with a panic disorder and she struggles so much. I appreciate anything that raises awareness!

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Anonymous said...

Thanks for the post. Alot of people don't understand why I am so upset, when I'm sat near small children in resturants. I have Hyperacusis, a sensitivity to sudden loud noises.

I have had panic attacks in the past when I wasn't expecting a noise. Most of the time if I'm asleep and then woke up by something loud.

As far as children in resturants goes, I don't see why it's so rediculous that I want to have a quiet dinner, without someone's darlings screaming in my ear.

It's not that I hate children, it's that there is virtually nowhere to go where there aren't kids somewhere creating high pitched loud noise. It's not like there isn't a Chuck E Cheese the parents can take the little ones to, so they can run around. Another thing about Chuck E Cheese, I like to say, "I don't go to Chuck E Cheese and scream at the children, so please try to keep your children from screaming at me here." That really is so difficult for parents to understand.

I also hear alot of, "Well do you really think I should stay home all the time cause I had kids?" Where I say, "Do you really think I should have to stay home all the time, because everywhere I go parents kids are allowed to run around shrieking, and if I even confront them politely about it I'm told I'm a monsterous kid-hater, or that I have no right to tell parents to discipline their children, since I'm not a parent myself and therfore don't understand?"

I hope you can understand this. I've been banned from a blog for expressing this. As well as have been told off by people for saying this. I can't possibly be the only person in the universe, who can't handle being around children 24/7. For whatever reason, people without Hyperacusis don't like screaming children too.

Bella said...

Thank you so much for posting this. I've identified so much from what she has written. It's so hard to go day to day with Panic/Anxiety Disorder and very few people understanding just how difficult it actually is - and that you're not looking for attention.

Ribsy said...

Thank you from the bottom of my heart for posting this.
I've suffered from panic attacks for what seems like lifetimes.
I'm bawling right now.

tee said...

Thank you - I'm in love with someone who has panic attacks, and I am trying to understand...thanks for shedding light onto what he goes through; it truly helps me.

Sweet Charity said...

Thank you for posting that! I had my first panic attack in January and am still in that stage of thinking it wasn't really a panic attack but a mild heart attack and now constantly worry about heart problems. It's so good to know there are other people out there going through this and that I am not alone or crazy.

Dawn said...

Thanks for this! I have been dealing with panic disorder with agoraphobia since 1995. You are right on it with everything you have said. You put it perfectly. It is hard for people to understand and we often want to run and turn a blind eye to what we don't understand or what frightens us.

This disorder is so difficult but I am staying positive that we will beat it.

Many blessings and thank you for your courage.

Anne Faulkner said...

Hi Violet, Just wanted to clarify - first I have Cat 4 hyperacusis, with anxiety, agoraphobia, depression and so on. I very much have the same difficulties around children - and I don't hate children - I know exactly what you're talking. People don't realize that children (and women) have high-pitched voices and much more difficult to tolerate, as are sharp shift in dymanic range. I wanted to clarify about the "loud noises" point. I used to have difficulty with that trying to explain it to people because it is a audiology test term. None of the sounds are, in fact, Loud, for a normal hearing person, it is the normal of the world, but when you have hyperacusis - even a quiet library can sound like a rock concert to us.

Anonymous said...

Just as there are many people who suffer with social anxiety there are many ways it can manifest in someone’s life. The generalized fear that everyone is watching them and everyone is thinking badly or judging them when they may logically know this is not the case is a very common experience for sufferers.

Yazzo said...

I have suffered from anxiety since I was a small girl.

Being sexually abused exacerbated my conditon and kept me full of fear.

I begin writing about my anxiety a couple years ago and have written now a book that should appear on in a couple of months.

I too suffer from being unable to attend a movie, ride a bus, go across bridges, take a plane trip. Sometimes I take pride in just making it to the bank or post office in a day. I have good days and bad and in each I still have the anxiety but cope better or worse depending on the day and it's situation.

The biggest issue I have is that most of us are "unseen" individuals and society doesn't really get us. I was "let go" from kaiser Permanente for disclosing my anxiety and they not wanting to deal with it. We seem to be an elite group of the invisible disability, one that society would rather not hear about. I am hoping my book will be a voice for those that are to fearful to speak and for those who need explanation of what we deal with on a day to day basis. My book is about my life with this disorder and how I cope and how I've perservered inspite of it.

There is hope out there and there are lots of things one can do to live freely and with humor and liveliness.

Everyday is challenge for me. Driving is sometimes a joke, but I make self go and do it even if to just buy milk.

I see you all of you and in you I see me and with all of us together we can be well in our own way.

Karla Yazzolino