Disability and Mental Illness

I began thinking about applying for disability in 2012. I had lost my job after a bad manic episode. At that time my mom was battling inflammatory breast cancer as well, and my children had just returned from a four year stay in Senegal with their father’s family. Stressed out doesn’t even come close to my mental state at the time. I simply couldn’t work under those conditions. I couldn’t even get off my couch or take care of myself in any capacity. I had no concept of functional self-care in any sense and I was barely lucid. After my mom passed away in early 2013, I became completely unstable. I went into a psychotic depression, sleeping off and on for several months. I was paranoid and delusional. I lashed out at those around me, accusing them of the worst things imaginable. My behavior was almost unrecognizable, and yet no one suggested I go to the hospital or even to my psychiatrist to get evaluated. They just lectured me to get myself together and stop acting out. Days merged into nights and I never knew what time it was or even the month. I developed bronchitis and then pneumonia but I still never left my house. I was too psychologically unwell. My primary care doctor was able to get antibiotics to my house as she knew I’d never make it to the emergency room for treatment.

At some point that winter, I finally decided to contact an attorney to help me file the paperwork for my disability claim because I knew I couldn’t complete it on my own. I remember telling the clerk I felt so poorly that if someone offered me a salary to simply staple papers all day, I’d have to decline because I didn’t have the energy to operate the stapler. I just couldn’t do anything productive. Even breathing was painful. I wanted to die. It took me 2 long years before I was able to get a hearing with a disability judge. My case was denied twice before that time. It was decided that I was sick, but not sick enough for disability. So I wanted to plead my case in front of a judge to see what would happen. On the day of my hearing, I was extremely nervous. Someone offered me a ride to the courthouse, because by this time I had stopped driving. I didn’t live on my own anymore either; I was staying with a family friend until I got back on my feet. Losing my mom took everything out of me. I was a shell of a person. Going to the courthouse was scarier than I thought it would be. My social anxiety was raging that day.

When it was my turn to go into the courtroom, my knees turned to jelly. I thought I was going to be sick. My attorney escorted me into the large room and showed me to the table where I would sit for the next hour. There were several people in the room already: The judge, the court reporter, a spectator/another disability lawyer, someone reviewing my case, and then my attorney. It was overwhelming and frightening. I felt like I was on display and I immediately wanted to run from the room screaming. But I couldn’t. I felt trapped. I sat at the table and shakily poured myself a glass of water. But I was too nervous to drink it. My attorney sat at an adjacent table. The judge introduced herself and explained why we were all there. She tried to put me at ease but it only made my anxiety worse. She asked me to begin telling my story and explain how I had come to be hampered by my mental illness. She wanted me to recount what had gone on for the last two years. But what scared me was that she had my medical records in front of her. How could I possibly remember all of that? I started talking and began stuttering right away. I do that when I’m nervous. Everybody in the room looked at me, puzzled. That made me more anxious and I continued stammering. I couldn’t stop. It was hard for me to put together a coherent sentence. My attorney looked so confused. Just a few minutes ago I was speaking clearly and without stuttering. I could tell she didn’t know what had happened and if I was faking my stutter. I was so embarrassed, but I had to keep talking. It was excruciating. My face was so hot, I thought it would explode. It felt like I was talking for hours. When I was done, the judge asked me a bunch of questions. I felt defensive and angry. If my medical history was right there, why was I being cross examined? It made me feel like a criminal. I was sad and humiliated. Everybody in the room could hear my most personal medical details; the worst parts of my disorder and what it had done to me. I’ve never been so ashamed in my life. I knew the judge wasn’t trying to hurt me and yet I felt demoralized by her pointed questions. All this in order to determine if my mental illness was in fact debilitating and disabling. This wasn’t fun at all. When it was finally over, she concluded that my medical records supported what I had testified to and that she would make a ruling in about 6 weeks. My attorney said that was a positive sign that things had gone in our favor.

In the end, I was declared fully disabled and entitled to benefits. But the point of my story is that when I hear people speak disparagingly about those receiving help from the state, it traumatizes me all over again. That was one of the worst experiences of my life. It was bad enough to have to live like that for those years. In a fog of complete mental instability and confusion. But then to have to recount it in a room full of people as though I was on trial was something that hurt in a way I can’t explain. I don’t mind being disabled by my mental illness. But when I think about that day, I hate my disorder and what it’s done to my life. I hate that I had to tell a group of people about my illness in that way because it isn’t readily visible and obvious. That’s what hurts and shames me. And that’s what I resent about the disability process.

May 4, 2017 0

Vulnerability

I was feeling vulnerable. I was feeling less than pretty. I was feeling old and worn, discarded by society somehow. I needed validation in that moment. I needed acceptance and maybe a bit of ego stroking. I’m human too, after all. But I was rebuffed. I was brushed aside like my feelings don’t even matter. That really hurt. I didn’t say anything though. I never do in those situations. I don’t feel comfortable expressing when I’m feeling like I need more from people. I’m embarrassed to be so complicated. And it hurts that being ignored makes me feel so deeply wounded and unaccepted. I hate this about myself. It makes me feel so exposed and raw. So easily able to be dragged over the coals of indifference at a moments notice. So I just sat there, in the dark, in my house. And pretended everything was fine. I laughed and joked like I wasn’t dying inside. As if I didn’t want to retreat to my inner most feelings cave and never come out. I willed myself not to simply disappear. I’m still fighting the urge. Part of me wants to write and get my feelings out, and part of me wants to run and hide in a dark corner where no one can ever find me. I want to hide in shame because I hate that I need validation from others at times. I desperately want this to change. And quickly so I never have to feel this way again. So I’m never having to force myself not to walk away from the world when I don’t get what I need. Being vulnerable like this feels like a curse.

May 2, 2017 3

Loneliness, Addiction and Lack of connection

People say the opposite of addiction is connection. I struggle with loneliness and a feeling of not being connected a lot of the time. I also have what is known as an addictive personality. So it doesn’t come as a surprise to me that I would have developed addiction issues and alcohol dependence at a point during my life. I talk about my mental health issues every day both online and in real life. But my emotional issues I don’t address as often. I believe those issues are at the root of why I struggled with addiction when I did. And why I have an addictive personality in general. It’s why I have such a deep feeling of loneliness even when I’m in a crowded room, and why even though I have such a tight-knit, loving family, I often feel starved for attention.

I remember times back when I was deeply entrenched in my alcohol dependence or stimulant addiction. I used because I was so very lonely and sad. I reached for the bottle and/or pills back then to stave off those feelings of soul crushing loneliness. I often drank or used when I was alone. That’s the thing about my addiction. I wasn’t as much a social user as I was a lonely user. That makes me sad when I think about it; even though I’m better now. I’m sad for that person and for who she was. And even when I partied with other people, I used to excess. I drank to a point of alcohol poisoning many times in my life. I’m not proud of that. And I used pills to a point where I was scared my heart would stop or I’d have a stroke. Repeatedly. But that didn’t stop me from using. I kept doing it over and over again, for many years. I needed to numb my pain. I still do in fact. I always will, I just have found healthy outlets for my needs. And I have learned how to control my appetite for those feelings. But it hasn’t been easy.

I spend time with my friends when I can, and I talk about my feelings with those who understand. Though that is a slippery slope in and of itself. Talking about addiction too much can make me want to use again, so I have to be careful. Being around people who use or used to is hard. Because I never know how well they are and if they will backslide. And I’m always one slip away from falling into addiction again. Alcohol was easy for me to overcome. I could fall back on my religion for help with my drinking habits. There was simply no justification for me to drink anymore and I really didn’t need it; even when I was manic. So I quit cold turkey. But the pills were much harder. I absolutely needed them for my medical condition of excessive daytime sleepiness and adhd. If I don’t take them I fall into an almost narcoleptic like sleep. It happens in the spring mostly but also it’s a function of my bipolar and depression issues. So I almost can’t escape using stimulants. My neurologist practically insists on me taking them, even though he knows I have bipolar disorder. So I have had to muscle through my addiction with them. Thankfully, I overcame it, mostly on my own. I’m proud and grateful for the work I’ve done, knowing that it came easier to me than for a lot of people. For that, I give thanks to Allah and I say many prayers of gratitude.

My loneliness comes and goes. But as I make more friends, I notice I feel more connected and less alone in the world. I think a part of me will always be lonely. That’s the little girl in me that just feels sad no matter what. I accept that. It’s just a part of who I am. Writing this has helped. And meeting new people online everyday has also been a blessing. I do believe that the opposite of addiction is connection. I am working hard at staying connected and staying addiction-free for the rest of my life. As I said the other day, I love my life now. I intend to keep it that way.

April 7, 2017 0

Loneliness and Isolation

Nobody really understands loneliness. At least that’s how I feel. And it’s probably different for each person. For me loneliness is like a sudden vacuum of feelings and emotions. Like the wind has been knocked out of me and I can’t breathe. It’s as if the world is spinning without me and I’m watching from inside my little bubble. I can see people going about their daily lives and routines, but I can’t join in. And that hurts more than anyone can imagine. I feel all alone in this world. Like if I were to die today, that no one would notice or miss a beat. And the pain of that realization is so crushing that sometimes I can’t stand it. People say to reach out when I’m feeling like this and to let others know I’m struggling. But that’s just it. I can’t. I can’t tell anyone how badly I’m hurting inside. I feel like I’m stuck behind a glass wall. I’m pounding on that wall with my fists, screaming to be let out, begging to be noticed. But nobody notices. Everyone just keeps walking right on by.

Everything makes my loneliness worse. Not having a family of my own, being single, living with roommates who are never home, having friends who are always busy, etc. I feel like I live on this planet alone sometimes. It’s one of the reasons I spend a lot of time on social media these days. In addition to receiving many jobs through my media outlets, I try to stave off feelings of loneliness by talking with online friends during the day. Anything to forget I don’t have what I want or need in real life to keep me occupied or engaged. Even when I do interact with people in real life, I feel this soul crushing loneliness. It is so painful. I could be in a room full of people and suddenly feel like bursting into tears. Even when I’m engaging in a conversation, in the back of my mind I’m thinking, “None of these people really understands me”. I hate that feeling. I know it may not be true. But I can’t help feeling that way. And I don’t know how to overcome it. I was thinking to join a group in my area for people who suffer from being isolated. Maybe that will help me get out of my shell and help me interact with others who are in a similar situation. I do know that people truly understand. But anxiety tells me I’m the only one feeling this way, which forces me to stay closed off.

I don’t want to wallow in my loneliness. I’ve listened to therapists who explain how to overcome this and how to feel better. And I know I’m not the only one. So I will put my best foot forward and try to reach out when I’m feeling lonely and isolated. It’s going to take so much work, but I don’t want to feel like this forever. Loneliness is the monster that has been seeking to destroy me for so long. I am determined not to let him win. It’ll be the fight of my life, but hopefully I’m up for the challenge.

March 27, 2017 2

A letter to my friend mental illness

Dear BP,

Hi, how are you? How have you been? I’ll admit I’m a little nervous writing to you because I don’t want you to think I’m asking to see you. And I don’t want you to think about me and decide to visit. I’m just not ready to be around you. But I did want to check in with you since you’ve been relatively quiet lately. If you recall, it’s been about six months since we spoke. Well formally anyway. I see your posts online from time to time but I never comment. I think we were last together at the hospital, right? That particular stay was a doozy! I hope I never go back. Remember that one girl who kept attacking everybody and calling us names? That was so wild.

So Ziprasidone and I are pretty friendly these days. I know how you guys feel about him, which is also why I’m staying away. But he’s good for me. I do miss our old friends though. How’s Elevated Mood doing? I hear she might be coming to town soon. I know she always heads this way in the spring for an extended visit. Ooh, maybe she’ll get to see the cherry blossoms this time. Tell her I said ‘hi’ if you talk to her. Out of everybody, I miss her the most. She can be a lot to take, but she doesn’t mean any harm. She just has a ton of energy. We always have fun when we’re with each other. I wouldn’t mind getting together with her for old time’s sake.

Hey, you know who I’ve been thinking about? Impulsivity. Man, we used to get into so much trouble back in the day! I’m so glad I’ve learned to love him from afar. But sometimes I like to reminisce about the things we used to do. If nothing else, to remind me what life used to be like before my health got better. Do you remember when he and I went to get matching tattoos? Goodness, it was like we couldn’t help ourselves. We just had to do it and nothing would deter us. I was shaking so much in the chair from all my nervous energy that the tattoo artist got upset. He said if I couldn’t sit still, he wouldn’t continue. Imp just laughed at me.

Afterwards I felt so ridiculous. And by then, Imp was nowhere to be found, as usual. I was embarrassed I’d let him talk me into getting the tattoo. What bothers me is I’m not even supposed to have those. It’s against my religion. But as soon as Imp started hyping up the idea, I couldn’t say no. And it came up out of the blue, so suddenly too. We didn’t think about the consequences or wonder if we’d regret doing it. This didn’t occur to either of us. All that mattered was getting that ink. To be honest, we’d been hanging out with that guy Compulsion too often back then, and we let him influence our choices. I think both Imp and I are pretty suggestible, if you ask me.

Oh my gosh, do you know what I did the other day? I decided to create a gratitude journal to remind myself of all the good things in my life that I’m grateful for. Oh BP, it’s been such a help. Every day I write about the things that make me happy and what I appreciate. You know they always taught us to do this whenever we’d go to the hospital. Well I finally got around to it. You should try it sometime. You’d love it! And maybe it will give you a better outlook on life.

Guess who I’ve been chatting with lately? Insomnia! Can you believe it? I know we used to hate each other. But we’ve since reconciled and we’re spending almost every night together. We laugh and carry on like two little old ladies. Her jokes about not sleeping are too funny. And she still loves to play pranks on me in the middle of the night, as much as she always did. That Insomnia is such a card! We really have to stop meeting up though, or I’ll get sick again. You know how that goes.

So I have to know, how’s BPD doing these days? Do you see her often? Has she gotten herself together yet? Last I heard she was ruining yet another relationship. I’m sorry to say it but I hope I never interact with her again. She and I do not get along. She makes me so mad, I can’t stand it. And we always bring out the worst in each other. It’s always all or nothing with us. Things are either great or horrible. There is no in between, it’s awful. She’s just not a good influence for me so I try to avoid her at all costs. And if you remember, I had to go to therapy partly because of her. I’m still salty about that. I’m not trying to shift blame or anything, but I can’t help thinking that if I’d never met her, my life would’ve been much less stressful and anxiety ridden.

Speaking of my cousin Anx, did you hear she had a baby? Yeah, she named her OCD. I’m not one to criticize name choices, but OCD? Ok, I have so many questions. Don’t tell my cuz 😉 But why that name? What does it even mean? That kid’s going to have a tough time in life with a name like that. Why OCD? Is it a family name? Is it symbolic in some way? I keep saying it over and over, letting it roll around on my tongue so I can get used to it. It just makes me feel so prickly inside when I say it. But I can’t stop. I’ve repeated it about 500 times now. OCD. OCD. Nope, I still can’t get used to it. It sounds strange in my head, like an echo and a hollow tinny sound all at the same time. Oh wait; I’m getting fixated again. Don’t mind me. You know I do this sometimes. It’s gotten better, but I still slip now and then. My brother Buspirone has been helping me overcome it. He’s been such a blessing. He has his moments, like everybody, but overall I’ve loved having him around. I wish I had told him sooner that I needed his help.

You know, Depression has been on my mind a lot lately. I can’t help thinking about him and wondering if he’ll ever get better. He just seems so lost sometimes. It’s like he lives in his own dark world where no one can reach him. I feel so badly for him. He brings everyone down with his misery, negative outlook and detachment, and he doesn’t even realize it. He’s a good guy, just misunderstood I think.

I guess you heard that Anger and I made up a few weeks ago. We decided to part ways for good, but in doing so I think we’ve reached an understanding. I’m so happy about it. I think he realized how he much he was hurting me and knew why we couldn’t see each other anymore. It’s really for the best. I sometimes get scared that I won’t find anybody else, but I’m trying to be patient. I don’t want to go back to him just because I’m lonely. It’s hard though. Being alone I mean. I can’t shake the fact that I’ll die by myself, with nobody there to notice. That thought bothers me all the time. People say ‘just be positive’. But even in doing so, I haven’t found anybody else that understood me like Ang did. A friend of mine always counsels me to accept things as they are and to look forward to better times. You know that girl Patience? The one everybody always talks about? Well she’s his best friend. I guess that’s why he’s always so calm and collected. Maybe I should meet her someday. She sounds lovely.

I’m not even going to ask about Grandiosity. He annoys me to no end. Always thinking he’s better than everybody and deciding he can do whatever he wants. He seems to think the world revolves around him. That guy is so obnoxious. And he makes me look bad when he’s around. I get sucked into his schemes and plans, and I forget who I am. But his presence is so intoxicating. You know how he is; charismatic and charming…until he completely alienates everybody with his over inflated sense of self. I’m sure I’ll run into him again soon. It’s inevitable.

Oh wow, I just realized this whole letter has been one big gossip session. Hey, maybe we both needed that. Anyway, I hope you’re doing well, BP. I don’t hate you or anything, but I need some space. I hope you can accept that. I know we’ll always be in each other’s lives. I just think it’s best if we limit our time together. Take care of yourself.

Love,

Karen

February 26, 2017 8

My experience with coloring apps to calm anxiety and stress

Art therapy is widely known to be an excellent tool in alleviating stress related to mental and physical illnesses. But for me it’s specifically coloring as an art form that seems to have a calming effect. This makes it a wonderful coping mechanism. The American Art Therapy Association says, “A goal in art therapy is to improve or restore a client’s functioning and his or her sense of personal well-being” (arttherapy.org). When I was in the hospital we used art as therapy in order to learn how to relax and smooth the prickly feelings of anxiety. We had guided lessons with the therapist, who used soothing music as an adjunct to our drawing/coloring sessions. I enjoyed those times in the art room. I learned to channel my energy into something beautiful, and the repetitive motion of coloring gave me something specific to focus on, instead of my symptoms.

The therapists advised us to keep a small notebook and a set of coloring pencils with us so that whenever we felt anxious, we could use coloring as a coping skill. However one of the challenges that I ran into early in my recovery was the fact that anxiety doesn’t appear on schedule, in a neat and timely fashion. It can be extremely unpredictable, especially when you’re out in public. So as an alternative, I began to use coloring apps on my phone to achieve similar goals. No, it isn’t the same as using real paper and pencils. There definitely is a difference between technology and traditional coloring utensils. However, I’ve found this to be a suitable alternative that I can live with, considering I’m often on the go when I start to feel anxious or a when a panic attack occurs. So these kinds of apps have truly been a life saver for me. In addition, I tend to obsess over minute details, such as the paper getting wrinkled, and if my pencils are sharp enough. Not to mention what happens if I color out of the lines or create something that’s flawed. Because of my OCD and anxiety, there are times when the nuances of coloring will leave me with more anxiety than I began with. And for this reason, the exact nature of coloring using a tech gadget comes in handy.

I’ve used my apps when traveling, in crowded spaces when I felt overwhelmed, and on the bus. It would have been difficult to pull out a pad and pencils in these settings. Yet my apps did the trick. I know that coloring is only one of the many ways in which a person living with an illness can de-stress. And I also know that people may prefer old school methods rather than the new ones we have today. For me, this is the perfect blend of therapy and current trends. And I plan to continue using these electronic tools to help manage my anxiety.

February 19, 2017 2

When Talking About Mental Illness is a Blessing

Anxiety

Something happened when I participated in the Twitter #ThisIsHowAnxietyFeels hashtag. I realized how similar people are in their mental health journey. And I saw that what I experience isn’t as unusual as I thought. I know it sounds cliché and it would seem after all these years I would have already surmised that point. But this was different.

I’ve met a ton of bipolar & depression sufferers over the last decade or so. All of their stories mirrored mine in some way. So I’ve felt a sense of solidarity. But anxiety is something that I’m still learning about. As is OCD. Bipolar disorder has taken a front seat, pushing aside all my other struggles. Even when talking to doctors and therapists. Anxiety just sits in the back, huddling in a dark corner, waiting to be recognized or acknowledged in some way. Anxiety for me has been like a lonely wallflower at a raucous party.

Anxiety is really the root of many of my daily occurrences, when I think about it though. I’d wager it’s more troublesome than my bipolar issues, because I know those so well at this point. And I know what to do when I have a setback. But reading what people had to say about their life with anxiety really made me rethink how I look at this illness. I understood, probably for the first time, how anxiety impacts my relationship with others. And how I react to different situations when my anxiety is running amuck. I didn’t think I had many light-bulb moments left when it comes to mental illness. But I was mistaken.

I had no idea that anybody else would relate to cleaning a floor meticulously by hand during an anxiety attack. Or that anyone would ‘get’ the feeling of isolation to the point of thinking you’ll die alone. I couldn’t have known people would understand my habit of checking things repeatedly even when it doesn’t appear to make sense. Actually anxiety made me believe that I had nothing noteworthy to contribute to this entire sharing session. It turns out that wasn’t true.

If you deal with anxiety in any form, I highly recommend that you check out this hashtag and interact with other anxiety ‘practitioners’ 😉 You’ll gain so much insight, and if nothing else, you’ll see first hand that we’re not alone.

February 17, 2017 0

Anxiety

This Is What Anxiety Feels Like

First let me say that social media has truly been a lifeline for me. Finding others online in similar situations has helped in ways I can’t even describe. Saturday night, a new acquaintance of mine started the twitter hashtag #ThisIsWhatAnxietyFeelsLike. Reading what people had to say was so enlightening. Heartbreaking at times, but overall I was thrilled to know other people understood what anxiety is really like. It’s been an amazing experience and I’m so grateful to @TheSarahFader for not only this, but what she does for the mental health community in general.

For the longest I didn’t know I had anxiety and OCD issues. I didn’t realize there was anything amiss to be honest. I was just me. Sensitive, thin-skinned, reactive, repetitive, hyper vigilant, nervous, self-critical, never good enough, me. That’s how I saw myself. People would ask questions like, “why do you care so much about what others think?”, “why is your self-esteem so low?”, “why do you react like this all the time?”, “why aren’t you more resilient?” During panic attacks: “Just calm down!” “What’s wrong with you?!” “Why are you so emotional?” I didn’t know the answer to any of those kinds of questions. And the funny thing is it caused a lot of self-doubt and self-loathing. Which is exactly what people were criticizing me for to begin with.

I thought I was happy and confident. Despite any psychological/social problems I was having, I was always bubbly, extra talkative. Even though I’m somewhat introverted. I just knew I had this other side of me, almost like this other person. And this ‘other person’ just couldn’t cope. Thankfully therapy and medication have really helped. But it’s still a daily struggle.

Here’s an overview of a typical day dealing with anxiety:

Wake up in the morning and hear my housemates moving around later than usual.

Thoughts: Why are they still home? It’s late, did something happen? Are they mad at me but don’t want to say? Did I do something? They probably wonder why I’m still in bed and are waiting around until I get up. Do they want to talk to me? Am I in trouble? C’mon, how could I be ‘in trouble’; I’m an adult, silly. Wait. Am I sleeping too late though? *chides self for 30 minutes for both worrying about what they’re thinking and for not having a conventional schedule*

30 minutes later, still anxious: Are they mad about something I said 2 weeks ago? I asked my landlord to put the dogs away when I have guests, because the dogs bark. Was that offensive? Should I apologize? I should apologize. I should play with the dogs extra (in front of him), to make up for any hurt feelings. I should offer to take the dogs for a walk…

Hours later, anxious thoughts creep back in: Why did my colleague just say that? Does she think I’m having an episode? Am I having an episode? Did I say something wrong? Ok what did I just say? Am I relapsing and don’t know it? Is that why X and Y were still home this morning? Did they think I was being weird too? They did! Oh God what should I do? Should I text them and let them know I’m fine? Are they talking about me? They want me to leave my house, don’t they?…

My apartment is the entire upper floor of my house, the loft actually. But I can hear people coming home downstairs. X slams a door somewhere in the house. Maybe all the way down on the first floor. Thoughts: Oh no. He’s mad at me isn’t he? I knew it! He’s been mad all day hasn’t he? Why didn’t he say something? Why is everyone always mad at me? What if I forgot to pay the rent? Did I pay this month? That must be it! *checks bank account to see if the money is gone and on what date it was taken* Ok so if it’s not that, it must be something else. I’m sure I’ve done something else…

Anxiety can be crippling. It can be managed in a variety of ways, but it never truly goes away. Just now I heard someone moving around downstairs. I had my characteristic anxious thoughts about who is still home and why. I won’t say for how long this went on. Then I remembered its Sunday. No one is supposed to be at work. Oh. Anxiety abated, for the moment.

February 12, 2017 2