Monday, September 9, 2019

Genetics is a Cruel Gamble

Barrett Hess 


   
What mental illness do you suffer from? 
PTSD, panic disorder with agoraphobia, depression. 
  
When was the first time you noticed it and how? 
I had asthma as a kid that I grew out of. Suddenly, in middle school, it started up again. Or so we thought. It's difficult to tell what's supposed to be normal as a kid. I thought I was weak and stupid for pretending to be sick all the time. It wasn't until I started missing a lot of school that my parents noticed a problem, and it wasn't until I passed out on the front lawn of the school from panic that we all realized it was a serious one.  
  
How does it affect your life as a whole? 
I'm completely disabled. I sometimes spend whole weeks unable to go outside. Some days I can barely even leave my room. Other agoraphobes can work from home online, but my stress reaction is so intense I can barely keep myself and my surroundings clean, much less have a regular job. I spent years overeating to force a food coma reaction and now I'm having to lose weight or risk permanent heart and joint damage. It's not all bad. As a result of working to better myself and my thinking, I have developed a strong sense of empathy and understanding. Over a decade of therapy has given me the ability to help those around me with processing their own emotional challenges. I'd definitely rather not live with my disabilities, but there have been some small benefits too. 
   
How does it affect your day-to-day? 
Day to day I have to be rigorous with my routine. I'm naturally a very chaotic person and it's challenging to make myself stick to the patterns that have been proven to help me. I find reasons to go outside on days I can, and I let myself rest on days I can't. It's often difficult to forgive myself for doing nothing in a week, even though those around me say it's fine to rest when I need it. It's an ever-present influence on my life and there isn't a moment of my day where I don't have to consider my intense stress reactions to every little thing. 
  
What have you learned about it? 
I've learned that every brain is different. In the beginning, I was bombarded with tips and tricks for managing stress and "living a happy life." None of them worked. I had to work diligently for over a decade to find a system that works for me. I've taken dozens of different medications at hundreds of different dosages trying to find the perfect balance. I've practiced different meditation techniques, yoga, breathing exercises, diet changes, vitamins, marijuana, etc. I had to sift through the mass of stress management styles to find the ones that work for me. The thing that took me WAY too long to figure out is that quite often, the technique that worked yesterday won't work again today. I need a toolkit of strategies that I can draw from. 
  
What has it taught you about yourself? 
That genetics is a cruel gamble. There's a book called "The Body Keeps The Score." In it, the author describes the physical changes in the brain that happen when the brain initiates the trauma reaction. Connections that exist in a healthy brain get dismantled and other ones established in order to make the person more paranoid (among other things) to supposedly help with survival. The unfortunate part is that some people have a stronger trauma reaction than others. Two people can experience the same thing at the same time and maybe only one walks away traumatized. Maybe both are traumatized, but one is slightly more paranoid than usual and the other is disabled by panic attacks. My reaction is about as intense as it gets, and I often find myself cursing my genetics as a result.  
  
Have you found anything helpful in coping with it? 
For me, coping is all about managing stimulants. I can't ever have caffeine, and sugar is a rarity. I like to play video games, but I have to be honest with myself and only play on days that I can handle it. I also stop playing games or doing other stressful activities at 8 pm sharp. That way, I can take 3-4 hours to cool down before sleep. I take a hot shower, read a book, watch calm YouTube (usually ASMR), or maybe work on my stories. I have to be productive enough in a day that I feel like I'm contributing to the household, but not push it so much that I make myself panic. Learning to forgive myself for panic days is something I still struggle with. My biggest help is my girlfriend. She's supportive and cuddly and only asks that I never give up on making myself better. I'm truly blessed to have someone who's willing to take care of the financials in exchange for companionship. I'd probably still be cutting myself in my parent's house if I hadn't taken the risk to put myself on a dating site. (Note to those who are disabled and looking to date. Be upfront about your challenges! There are people out there who are looking for someone like you. It takes a while to find them, but trust me, they exist.) 
  
Describe a time in which you felt empowered after doing something in spite of the disorder. 
Definitely making it to my best friend's wedding. His family has a beautiful property in Vermont where they held the ceremony. I live in Seattle, so it was a difficult trip. I was part of the groomsmen, and he asked me to spend a week out there to help set everything up and keep him sane before the big day. Using every trick in my book, I did yard work and every other conceivable chore to help out. I did my job as a groomsman and was even able to enjoy the 200+ person outdoor party for a couple of hours before needing to go back to the hotel room. I paid for it after getting home with a couple of panic weeks, but it was worth it.  
  
Comments 
Thank you for managing a blog like this. I hope my experiences can help someone out there who thinks they're broken beyond repair. Mental Health is an ever-present journey, not an event with finality. 

Neither Alone Nor Overlooked

Anonymous


What mental illness do you suffer from?


I battle anxiety, C-PTSD, and PTSD. My PTSD comes from being raped at the age of nineteen, and my C-PTSD is from being verbally and emotionally abused, manipulated, and bullied my entire life by a couple of toxic individuals. In the past few years, I have been learning how to put up healthy boundaries with them to help both myself and others.


When was the first time you noticed it and how?


I have dealt with two for as long as I can remember, but I did not know what they were until my therapist explained to me four years ago. Before then, I just had some people telling me that I was too high-strung and sensitive. That made me try to shove it down, but it oftentimes made things a lot worse. For a while, I just thought that my PTSD was deserved guilt and shame that was eating away at me.


How does it affect your life as a whole?


My PTSD is triggered by certain things and does not come in play as often since my husband has been very patient and gracious in helping me walk through this journey. As for my anxiety and C-PTSD, they tend to affect me on a regular basis, causing anything from my paranoia about having to triple or quadruple check things to having a breakdown over things that could happen because my mind runs rampant with its imagination. Because of the anxiety, I tend to have tense muscles that can lead to migraines if I do not take care to stretch and relax.


How does it affect your day-to-day?


My PTSD and anxiety causes me to be on edge a lot of times and has me overthinking everything. It can put a strain on people around me when I feel a sense of dread that something is wrong and insist that I have to get something done right then and there. Or, as I said before, I have to check that I did something over and over just to remind myself that it was, indeed, done. My loved ones tease me sometimes, but they do work with me and try to have patience. C-PTSD has me expecting the people closest to me in my life to treat me poorly, manipulate me, and shame me. I have to constantly remind myself that the toxic people in my life that caused the C-PTSD are not like most people, who are actually kind and want to treat me well. That doesn't mean that they will not slip up and make mistakes, but their intentions toward me are good.


What have you learned about it?


I have learned that I am not the only person dealing with these illnesses, which is both saddening and comforting at the same time. Now that I can put a name to why I feel and do some of the things I do, I feel like I can handle it better with my newfound understanding. I did not know that C-PTSD existed and that it was not the same as PTSD. I do have PTSD from a single traumatic event, but C-PTSD comes from repetitive abuse over a long period of time, and that one affects a lot more of my day-to-day life.


What has it taught you about yourself?


Funny enough, I guess I have learned that I am stronger than I thought I was. I used to think that I was weak because I suffered so much, but now that I understand that none of this is my fault, I feel resilient overall. Granted, I definitely have bad days, but I figure that if I keep fighting, then I'm winning.


Have you found anything helpful in coping with it?


My therapist has been extremely helpful in explaining things to me as well as giving me ways that I can help myself when my illnesses get the better of me. Being honest with my friends and family have definitely helped situations, that way they know what I'm struggling with and can be there in any way they can. I don't like to be a burden on anyone, but I am learning that being vulnerable helps avoid worse situations where I have a harder time. God has also been a huge part of all of it for me: scriptures and prayer have definitely helped encourage and refocus me. He gives me a lot of grace, hope, and strength to keep going. Plus, of course, my writing allows me to put my feelings on the paper, whether it be in the form of a poem or a story.


Describe a time in which you felt empowered after doing something in spite of the disorder.

Honestly, being able to share my story has empowered me: I love being able to inspire someone to get help and extend a hand to others. I posted my #MeToo on Facebook and had a lot of friends and family who thanked me for making them feel like they were neither alone nor overlooked.



Comments

To everyone, regardless of what you are going through or dealing with: there is hope, and you are stronger than you think.


Never Felt More Seen

Mary B. Sellers 
  
What mental illness do you suffer from? 
  
Quite a few, if I’m being completely honest, and all at varying levels. I’ve suffered from obsessive compulsive disorder since I was very young, but I wasn’t officially diagnosed until after my freshman year in college. According to my doctor who administered the diagnostic test, I blew it out of the water. If I remember correctly, I showed up positive for like 10 out of the 12 official OCD traits, and I remember bursting out into laughter when she told me. I was a little hysterical, but also immensely relieved that what I’d been feeling wasn’t just in my head. I felt a little less lonely, and that was a nice feeling. I was also diagnosed with moderate to severe generalized anxiety around the same time. 
  
In 2015, when I was 24, I was diagnosed with adult ADD. A pretty late-in-life diagnosis, but after I got it, I felt such relief. It actually happened as on accident, too. I’d started seeing a new psychiatrist and after going through the whole 2 hour “let me tell you about my life” thing that’s required of new patients, she asked me if I’d ever been tested for ADHD. I hadn’t. But I told her my first grade teacher had recommended Ritalin to my parents, because I was a TALKER back then. I used to be a class clown, and far more interested in playing Barbies or pretending I was a witch then learning Social Studies. But my parents had refused. Those drugs were still new, and I remember my mom getting really upset, because she’d read some whacky article about Ritalin making kids alcoholics later in life. So yeah, it took 24 years for me get that diagnosis. 
  
In 2018, I was diagnosed with a pretty severe case of clinical depression, with suicidal ideation. Some days, I still feel like I’m in the midst of depression. I’ve also learned that once you experience your first depressive episode, it never really goes away. I can feel it lingering near the edges of my mind. It’s always and it’s constant. Sometimes it’s benign, but I can sense it waiting. Depression is deadly with its patience. It’s a massive, slow-moving hulk of a thing. It’s all-encompassing. It can swallow a person whole. 
  
This isn’t technically something I have, but it feels relevant and explains a good deal about me: 
My mother has the most severe (as well as hard to treat) form of Bipolar 1 disorder, with psychosis. She’s been hospitalized 5 different times, and some of those times were court-ordered. Now, she gets electroconvulsive therapy every 2 weeks. I don’t agree with the procedure, and how, in my mother´s case, it is used as a bandaid for a variety of very complex issues, and especially how often it’s administered. So, while I don’t have bipolar, I’ve lived with the disease since I was 13 years old. I know it through and through, I know what it looks like on others. It's sneaky. 
  
When was the first time you noticed it and how? 
  
For my OCD, the first time I remember noticing it was when I was in first grade. I’d started having to say my nightly prayers in a specific order, and if, somehow, I messed up that order, I had to start all over again. This could literally take... hours. Something in my head assured me that if I didn’t say them correctly and in the proper order, someone I loved would die. I also began flipping light switches on and off, and I always had to end on an odd number. This also took a lot of time. I think my sleep problems started early partially because of this - I’d trained myself to feel fear and anxiety around bedtime. It wasn’t a time to relax and let go for me; it was a time to put myself through rigorous mental tests; it was time for perfectionism. Later, in high school, I went through a phase of washing my hands to the point of making them bleed. I’d go to school with these raw red hands and people would look at me funny. It also forced to me take about 5 showers a day. It was so tiresome. Sometimes I’d just sit down in the shower and cry because I felt so completely out of control. There were other things, too. 
  
I developed trichotillomania when I was 11, right after the grandmother (who had basically raised me for a time, when both my parents had full-time jobs) died. She was a second mother to me. I was devastated. Trichotillomania often occurs in people right before puberty hits. It can also be exacerbated by extreme stress or after a traumatic event - not to mention, it’s also a subset of the OCD spectrum, and is officially classified as an Impulse Control Disorder (think: pyromania, shoplifting, gambling, and other addictive behaviors). 
   
For anxiety, I was 19, it was my first summer after my freshman year in college, and I had this fancy editorial internship to look forward to. The night before it was to start, I experienced my first panic-attack. I remember lying on the hardwood floor in the living room of my parents’ house and sobbing. I couldn’t stop sobbing because I couldn’t seem to catch my breath. I remember how startled my parents looked. It scared me that they were scared. 
   
Getting my ADD diagnosis when I was 24 explained so much about my life: why I never could focus in class, but instead, would go home and memorize the book for an upcoming test. I have a very visual memory. To study, I’d take a sort of photograph of the page (mentally) that I needed to learn, file it away, and then call it forth when I needed it to answer a question. It sounds strange, but I could kind of “locate” and “see” where the information was on a page (in my mind). The downside to this was that I don’t think I absorbed a ton of it, because that sort of memorization is only a quick fix, a bandaid, and it dissipates after a few days. These cram sessions became a type of compulsion, almost. It also explained other things: my inability to comprehend a map or directions, how before a math test my mind would literally be wiped blank, I’d experience a terrifying sort of tunnel-vision. There’s a high visual aspect to writing for me. Seeing words on a page helps me organize my thoughts. I think that’s probably why I love making to-do lists. 
  
As for depression, that’s relatively new. The summer before my third and final year in graduate school, I started feeling... numb. It progressed, and I ignored its progression until one day I woke up not wanting to live any longer. It was more intense than complete apathy. I don’t know if there’s a proper word to describe what (or how little) I felt. But that same morning, I had a creative writing class to teach in less than an hour, so I got ready, went to class, taught for the full hour and fifteen, and drove back home. Then, I messaged a friend on Facebook to tell them what I was feeling, because I knew, intellectually at least, that I needed help. Other stuff happened, but I’m not ready to talk about it yet. 
    
How does it affect your life as a whole? 
  
“OCD is the disorder of uncertainty.” 
  
I can’t remember where I read this, but it’s stuck with me over the years as the perfect definition. 
  
Because some of my disorders started so young for me, I can’t imagine my life without them. OCD, especially, has this way of defining the parameters of a life. I now make a point of getting ready ~20 minutes before I need to be ready in order to give myself enough time to do my routine “checking”. I start with the bedroom, progress to the bathroom, and end in the kitchen. I check all sorts of things: outlets, whether electronics and lamps are unplugged, the windows, the sinks, the stove. Sinks and stoves give me an especially hard time. Sometimes it takes 3 or 4 tries before I’ve convinced myself they’re off. Having OCD means you’re constantly doubting yourself and the material world around you. Just because the sink looks off doesn’t mean it’s actually off. I have waking nightmares of leaving the oven on and my apartment bursting into flames, with my dog, Daisy, trapped inside. I love my dog maybe a little too much, and I definitely noticed that my ‘checking’ compulsion became much more pronounced when I got her. The thing that sucks the most about OCD is that it plays on your deepest fears. It chooses the people and things that mean the most to you, and holds them hostage. That part is the ‘obsessive’ part. The compulsion part follows: it’s the repeated, ritualistic actions that you do to prevent the obsession from occurring. The bad part about this, though, is that I can’t remember a time when my life wasn’t defined by these rituals and recurring fears. It’s a little bit like the movie Groundhog Day; your just stuck repeating these thoughts and accompanying actions over and over and over again. 
  
Anxiety - it also affects most areas of my life. I’m incredibly sensitive and I’ve got a lot of self-hatred I need to work through. It usually manifests through convincing myself people hate me, that I’m stupid, that people are laughing at me behind my back. I also experience physical symptoms of anxiety: tingling & partially numb lips and lower face, hypertension, insomnia, dry mouth, and occasionally, if I’m in a really uncomfortable situation (like speaking in front of a group), stuttering. Sometimes it wipes my mind completely blank and I can’t, for the life of me, remember debit card’s PIN number in the grocery store. On occasion, I’ll experience sleep paralysis. I hate it so much. I think it’s not talked about enough. 
  
I think I already pretty much answered for my ADD, but: I remember what the psychiatrist who gave me the diagnosis told me. It went something like: “Mary, you’ve basically been doing double the work of your classmates to keep ahead. The fact that you still had academic success (I graduated Magna Cum Laude, Phi Beta Kappa, and Phi Kappa Phi) means you’re obviously an incredibly bright person. No one with your level of ADD who achieves that is dumb. You’re gifted, but you’ve also got this disorder that really limits you.” 
  
Depression: I think I also accidentally answered this earlier, but depression has forced me to view my life in the BD and the AD (before depression and after depression). I am not the same person that I was before I got depressed. It’s startling to realize this. I may look the same and act the same, but I can feel the inherent difference between my present self and the girl — no, the child — I was before it. I’m a little sadder, a little bit wiser, and the idealism that had helped bolster me in regards to my “wanting to be a writer” was completely stripped away and exposed for what it was: a tenuous, fragile thing. A possibility that might not happen. 
  
I’m less certain, now, but I also accept chaos a lot more calmly than I used to. Have you ever heard of THE SECRET LANGUAGE OF BIRTHDAYS? Well, apparently my birthday is called “The Day of the Charged Reactor” and my assigned motto is: “what do you see when you live at the center of the cyclone?” 
  
I have literally Never. Felt. More. Seen. 
    
What have you learned about it? 
  
Mental illness completely shapes the person you are and person you’ll eventually become. Without mental illness, I’d be a completely different person. It isn’t glamorous. It isn’t what it looks like in movies. Having mental illness doesn’t help you be a better artist, and unfortunately I’ve had people say as much to me, that they wished for more tragedy in their life because that would help them write better. I can’t tell you how angry this makes me. 
  
What has it taught you about yourself? 
  
Just because I want my life to be a certain way doesn’t mean I’ll achieve it. That I have to face each day anew and start all over again. That some days are just going to be bad days, and some, a rare few, will be better ones. That I want to be here, and that I need to focus all of my energy on never feeling -- the way I did those couple of weeks when I spiraled out of control -- again. It’s hard to be here, but it’s the better alternative than not being here. I’ve got things to do before I go. 
  
Have you found anything helpful in coping with it? 
  
Reality television. No, seriously. Reality TV got me through the worst parts of my depression. One day I’m going to personally thank Andy Cohen and the Bravo TV network for being, what I felt, the only friends I had to turn to for a few months. And also: shopping. Online shopping is something I’ve been forced to regulate in myself, because I definitely get that endorphin rush when I do it. It’s addictive, and I’ve got an addictive sort of personality, so I have to be very careful. 
  
Describe a time in which you felt empowered after doing something in spite of the disorder. 
  
I managed to finish writing my MFA thesis, and successfully defended it, despite having spent most of my third year in grad school avoiding writing. Depression took away my creativity, and it still hasn’t fully returned to me. But I managed. I stayed up late. I did the work. I willed myself to do the damn thing, and I’m proud of that.