How About Using Another Disease Sometimes?

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Every now and then, a well-meaning giver of feedback in a support group tells a distressed and uncertain newcomer that her illness is “just like diabetes”. You don’t think twice if you have to take Metformin or insulin to treat your condition goes the argument. So why balk at psych meds?

Just today I saw a writer in The Guardian put a slightly different twist on the analogy:

We wouldn’t accept misinformation about diabetes being widely circulated without correction so why should we allow it for bipolar and other mental health conditions?

I live with both bipolar disorder and Type 2 diabetes. Let me start out by saying that the treatment for the two diseases is alike in some ways and very different in others. It is true that I have to take medication for both. Exercise helps both conditions. But as a diabetic, I have to keep checking my blood sugar, test my toes for loss of sensation, and examine my feet for lesions that could lead to amputation. An optometrist checks my eyes every year for retinopathy. Eating right is critical. Diabetes is a chemical condition, but the story about bipolar disorder is more complicated than that despite what the pharmacy reps tell our doctors. So the analogy goes only so far.

If we want to concentrate on the medication angle and false information angle only, why use diabetes all the time? I have other comorbitities that require regular medications such as my heart condition which I treat with anti-cholesterol drugs and blood pressure pills. Thyroid conditions have more in common with bipolar disorder so why don’t we use these parallels? Vary the example. And be very aware of how diabetes and bipolar disorder aren’t alike and how our oversimplification of the root causes of bipolar disorder is wrong.

The Dangers of Online Mental Health Quizzes

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Alright so this is a big topic for me. A fellow author posted a link to a ridiculous quiz on Facebook that I feel the need to (and was asked to) write about.

I am going to take this quiz, step by step, and report exactly what I think about it. And after I will tell you why these quizzes aren’t just silly or stupid, but dangerous (with my anecdote evidence- reliable I know).

Alright, so when you click on the quiz, it starts off by saying, “Are you prone to dramatic and unpredictable mood-swings? What about anxiety and frustration? What’s your level of uniqueness? Find that all out right here.” Right off the bat I am annoyed. This perpetuates the stereotype that bipolar is sudden changes in mood. Going from happy to sad and back in a second. Unless you have extremely rapid-cycling bipolar, this is very unlikely. Bipolar is experienced in episodes. Generally meaning they have to last at least a few days. Although I do have little spikes of bipolar feelings, they aren’t full episodes and are mostly just annoying.

And for anxiety and frustration, yeah those can happen. I have anxiety that is sometimes correlated with my bipolar. But bipolar itself doesn’t specify that you need to have anxiety. Additionally, “frustration?” Really? Who doesn’t experience that? And lastly- “What’s your level of uniqueness?” That makes me want to hit my face on my keyboard. Being bipolar is unique in a sense, because a small amount of the population experiences it. But in this context it is taken in a positive way. In the United States we have a culture where individualism and self-expression is very important. If you’re unique, then it’s usually considered a good thing. But as far as I’m concerned, bipolar is not a good thing.

And then, of course, it adds that this should be used as a diagnostic test. And I’ll explain later why that really doesn’t matter.
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Arguing with the God Within

Near the end of Ingmar Bergman’s classic Winter Light, the troubled minister who is the film’s main character, can’t decide whether to hold the 3 o’clock service or not. His day has been especially depressing because he gave counseling to a parishioner who subsequently committed suicide that very afternoon, he fought with his mistress, and he has the flu. The church sexton, a disabled survivor of a railroad accident, talks to him about the part of the Gospels which he has been reading, the Passion.

Jesus, the sexton reasons, didn’t suffer all that much on the cross. Why, the janitor goes on, he personally suffered more pain in his life than the four hours that afflicted Jesus and his pain was probably much worse. No, the crucifixion is not the most important segment of the Passion. Think of the Garden of Gethsemane, he says. The Last Supper is done. The disciples who have accompanied him have no clue about what is about to happen, so they go to sleep. Jesus is all alone, so he kneels down to pray. And what does God the Father say to him? Nothing. God is silent. And that, the sexton reasons, is the most terrible ordeal that Jesus endures.

Agnostic that I am, I still value the Gospels as a guide for understanding the suffering that is happening in my life. But what I would give for a silent God at times! In the void, my depressions fill the emptiness with the voice that is the worst of the Old Testament combined with Catholic guilt. I call this my inner god — a false god to be certain — because its primary purpose is to torment me. My illness exists, according to this voice, for the purpose of punishing me. But therapist after therapist has asked me What have I done that is so terrible that I deserve this constant hammering at my self-esteem? I can throw out a number of things, but they are all trivial compared to the actions of some of my peers who feel no shame for what they wreak against others. Surely there should come a place where my penance is over? But no matter what amends I make, the god inside me continues to berate me and declare me worthless.

One reason why I value my manias is that they shut down this voice entirely. Only my own ideations occupy me — obsessively. My thoughts race from project to project, propounding desperate philosophies that enthrall me more than methamphetamine. The evil god, the blasphemer against my happiness is put to death and does not rise again until I crash. Then for more than forty days at a stretch, the god assaults me with shame.

For the depressed and the anxious, the silence of God is a scream.

Unhealthy Study Habits

One time my therapist asked me one of the most personally significant questions I’ve ever heard.

She said, “What is more important to you? Cutting yourself in order to ace the test… or putting your health first and failing the test?”

(Just to explain, I used to cut myself before studying because it helped soothe me and allowed me to focus. I got all the pent up anxiety out that way so I could “ace the test.”)

And it was so embarrassing to tell her the truth. The truth I’d lived numerous times over and over. The truth that got me through so much of college.

I told her, “I’d rather cut and ace the test.”

Because it is true. To me, my academics and my future career are so much more important than my health is.

And I know that’s messed up.

But we are so hardwired to believe that success is more important than anything. That being a hard worker is so desirable.

That we ignore the damage it can have on us.

The worst part is, if you asked me that same question over again today- I’d still have the same answer.

-Quinn

“Could it be the medication?” -My mom

My parents have always been against me being medicated. When I was 17 my dad refused to sign for me to have medication, so I had to wait till I was 18. And then I had to be financially supported by them, but my mom reluctantly agreed after a GI specialist told her I needed to see a psychiatrist (that’s a long story for another time)

Whenever I would say I feel [insert negative feeling here]. My mom would always reply, “Are you sure it’s not the medication.”

Well one night I came home from a support group. I didn’t have the willpower to eat with the group afterwards. I told my mom this as I shaking. I was stuttering. I leaned against a chair and told her I needed to eat because I hadn’t eaten all day (and plus, I only ate a couple grapes and stuff the day before).

I was having really bad anxiety, and anxiety doesn’t let me eat. It doesn’t let me eat until I feel sick and weak. It doesn’t let me eat until I am seeking professional help for the extreme weight loss. It doesn’t let me eat because when I try, I will vomit.

My mom started suggesting foods, I looked in the cabinet. And it came over me. Just the thought. 

I ran into the bathroom and my mom got up and followed me, “Oh Quinn.” It was her disapproving tone. It was as if she was saying, “Why are you letting yourself get so worked up over literally nothing?”

I thought she would understand because my dad has anxiety. But as it turns out, our anxiety is very different. He gets mad and he might overeat. I get withdrawn and I might vomit.

My stomach was empty, so I was spitting up bits of stomach acid. I was crying.

My mom held my hair back and asks me, “Do you think it could be the medicine you’re on?”

I laughed. In between my gagging and spitting, I laughed at her.

I bitterly spat some bile into the toilet and told her, “No, it couldn’t be.”

“How do you know?”

“Because I quit the meds.”

That was a changing point for her. When I was done, we sat down, and she gave me a piece of toast to munch on. I couldn’t eat the whole thing. But I told her the truth- I thought the medication (Zyprexa) was making me depressed- so I quit it. But as it turns out, the medication was the only thing holding my anxiety back. And quitting it cold turkey without a doctor’s supervision was very dumb of me.

It turned out to be a very symbolic moment. After I explained all this, she offered to go get the medicine for me, so I could take it right now. I nodded, told her where it was, and took it when she returned.

My anxiety levels went back to normal over the next day or so. But there was another occasion where she showed that maybe medication isn’t the worst thing for me.

During my recent manic episode, I told my mom I just could not take the increased dose of Zyprexa, I just couldn’t make myself do it (because part of me wanted to stay manic). I told her the doctor suggested I give the pills to her, and she could dose them out to me. But I hate when other people have control over my medications, as I feel I know better than they do, so I didn’t give her the meds. As a result, I only took the increased dose on two different occasions, and it made me very depressed. I felt bad walking into the psychiatrist’s office and explaining that I just couldn’t take that dose, I was manic (but I was unable to explain that part of me wanted to stay manic), and it made me too depressed to handle. Ultimately, I asked my psychiatrist just to put me on something new. And she did. And that’s what I’m working with right now.

Medication compliance is difficult for some people struggling with bipolar. Sometimes we think we are all better and quit them because, “We don’t need them anymore.” When in fact, it probably means the meds are working, and quitting them will just cause problems. In other cases, we are annoyed by a side effect or some other problem. We think we know better, but do we really?

I think it’s a lesson a lot of us learn the hard way.

-Quinn

 

Something I wrote when I got out of the hospital

I was angry that I had been hospitalized. I didn’t understand why they thought taking me away from my family was a good idea and why they couldn’t have called someone when they couldn’t handle me.

My family of origin thought that the time I spent on the computer contributed to my illness and didn’t want me to go on. I typed up this outline of how I would like them to treat me, but they dismissed it and were just upset I had been on the computer.

I am not sure if this has anything worthwhile. It was right after I was diagnosed and I was still very ill. I made some sweeping generalizations and I don’t think people need a manual to talk to someone with a diagnosis,

my first first thought was to edit, but I decided to leave it as is. If this bothers anyone I can edit or remove it. Mainly I am just surprised I was well enough to write. I was pretty symptomatic.

 

HOW I WOULD LIKE TO BE TREATED
Introduction:
I. I can control my behavior with the guidance of professionals
A. You can not cause reactions I have, like the paranoia that led to my hospitalization, but if we had asked for guidance from a professional he would have told us that relocating someone in that condition often leads to paranoia.
B. Trying to modify my behavior without asking for my input makes me feel paranoid that I am being controlled. I am willing to discuss an issue that troubles you with my psychiatrist, therapist or support group.
C. All I expect from my family is to listen and be understanding. I appreciate how helpful everyone has been.

II. I have an illness
A. I know under other circumstances it would be wonderful that I am spending more time on myself, but pointing that out while ignoring that the underlying reason is because I am unable to do many things because of my illness, is hurtful to me.
B. I can not just cheer up or snap out of it. I can take my medications and follow my Dr’s orders.
C. Once my illness is under control, it may be helpful to remind me if I seem a little more irritable or anxious, but right now that is expected with a mood disorder while they try to find the right medications and they take effect.

III. Realistic Expectations
A. I don’t know what are realistic expectations for me yet. My Drs seem to feel I will be able to return to working, driving and taking care of my daughter and son.
B. Please don’t compare me to others. There are some things that are too stressful for me.
C. I have high standards for myself, and I like my life the way it is, when Ii’m healthy

IV. The psychotic episode was a traumatic experience for me
A. I don’t want to discuss the thoughts, because I am afraid it may trigger another episode
B. That was the scariest experience i’ve ever had
C. I will work through the anxiety and paranoia with my therapist, but I do still have to recover from being psychotic and hospitalized.

V. I hope we can all learn something from this experience
A. I think there is a less traumatic way to get help. Many people wouldn’t willingly go to a locked psychiatric facility, but they would go to the Behavioral Health Unit of a hospital
B. I do worry about our family members on SSRI drugs without mood stabilizers, zoloft triggered mania in me.
C. The difference between an obsession and a passion is if it is interfering with the rest of your life. I am trying to use this time to remember what is really important.

Conclusion:
I will treat everyone as respectfully as my illness will allow, and I expect to be treated with respect in return. I understand that you may be afraid, I am too, but my therapist thinks there is a good chance  never have another psychotic episode.

HOW I WOULD COMMUNICATE WITH A PSYCHOTIC/ PARANOID PERSON
Introduction:
I. When I was in this state I regressed to a child-like state
A. Explain any changes clearly and in advance
B. Emphasize any key words and make sure the person is listening
C. If you think they are hearing voices, written communication is probably better than verbal. I tune-out some things but I pay attention if key words are emphasized either by talking louder or writing and circling key words
.
II. Include the person in any plans
A. People with schizoaffective disorder are resistant to change
B. Plans made without their input may increase paranoia
C. Offer to go to psychiatrist appointment with them, if they seem to tune out sometimes, and discuss having them sign release of medical information.

IDENTITY VS ILLNESS

Introduction: It can be difficult to distinguish between the individual’s true identity and those behaviors that are due to the illness

I. I have some traits that I consider part of my identity that are not highly valued in our society. I want to treat my illness but not give up who I am. Some of these traits for me are:
A. passive
B. stronger written than verbal communication skills
C. sensitive

II. There are traits of the illness that seriously impair my life and I need medication, coping skills, and support to deal with these. Some of these are:
A. Paranoia/Anxiety
B. Impulsiveness
C. Irrational Thinking
D. Isolating

III. There are some things I may enjoy that others may not understand, but it IS normal behavior
A. long baths
B. Solitary walks
C. Reading
D. Computer Interaction

Some things I wouldn’t want to hear
A.i want the old you back. I am still here, hiding behind this illness
B. You need to do this I don’t take orders and I prefer to take advice from professionals (others may vary on who they trust)
C. You are being too emotional. i do understand the sentiment, but I can’tc ontrol how I feel

Loser Who Thinks Too Much

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square844Both those terms have been used to describe me. An insult just doesn’t stab, it leaves a wound — not a scar, but a bleeding dripping lesion that comes to you in your worst depressions and sometimes — like now — when you are feeling just fine. I am a loser because I have not worked since I was 33 and do not have kids. I did not make a million in Silicon Valley and no one buys my photography or my writing (which I haven’t tried to sell in a long time.) Never mind that I have been married 27 years to the same woman, never hit or threatened to hit her or called her a vile name. I am a loser, a pariah.

The isolation of bipolar disorder is hell, but the isolation of my personality is worse. When I take tests such as the Myer’s Brigg, I keep scoring in the rarest categories. Less than 1% of people out there share my characteristics. We wander around, seldom meeting each other. The way we see the world, the things we strive for just aren’t appreciated or discerned by the rest of you out there. You come onto my blog, read my accounts of my illness or other aspects of my life and you don’t get me. I am a cipher, a shadow on the wall swept by the wind, a curiosity that cannot be. I, like others of my kind, feel alone. No wonder so many of us end up in monasteries or convents.

An article from a 2010 issue of The Guardian cites a pundit who believes that the InterNet has destroyed our ability to think deeply. All the shallowness of our political talk, our inability to concentrate works of art that encourage us to probe our minds, the simplistic and self-serving grasp of religion — those things I believe have always been there. InterNet debates are only emblems of a longtime tendency for their participants to refuse to engage with people who disagree with them, to damn new ideas with oversimplifications and patronization, to mock differences. People have always told me that I think too much, even educated people. They twisted the gifts of my mind into a curse. So I hide from them. I do not speak of my cogitations in any place other than here. Yes, I pretend to be something that I am not, but what am I supposed to do when I am so alone and the mass of human beings cannot and will not trouble to understand me?

Bipolar disorder with its wild antics and chilling depressions hogtied me for the longest time. I’ve come out as a new person, but the rest of you remain the same. Freak is how you thought of me when the disease ran my thoughts and freak is how you think of me now that I am in my right mind. Was it worth it?

“It gets better”

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*Trigger Warning- Suicide* The realization I describe in this post made me feel very suicidal when I had it several months ago (I am fine now), read at your own risk, and please be safe.

“It gets better.”

The most depressing realization I ever had about being bipolar was when I read a 17 year old girl’s account about her bipolar. She says she sat on the edge of her bed with pills in hand, ready to swallow them all. But instead of taking her life, she went to her mother’s room and sought comfort.

She ended it by saying, “It gets better.”

(I wasn’t very inspired.)

We’ve heard that a million times- “It gets better.”

And it does get better.

Before I read her post, I would say that too, “It gets better.”

But dear sweet little 17 year old girl, if the doctors say you’re bipolar. Then you’re sick for the rest of your life.

I was your age when I found myself holding a noose, what stopped me was that I couldn’t find a place to tie it up at. A month later, I was put on medication, and for what seemed like the first time in my life- I was happy. I was just like you, trying to tell everyone how things “can get better.”

And then two years later at the beginning of winter, I slit my wrist open and the consequences led to a hospitalization which led to me getting suspended and much more. Suddenly I realized how deep I’d fallen again. And then about a year later, I had a job and I was doing well in college and I was so very successful. And I was saying, “Things do get better.”

And then another year passed and I fell and broke my wrist. And with my wrist, my mind followed suit and I found myself more manic than I ever knew I could be. I made many plans to vandalize, let a man film me doing a sexual act, popped pills like candy, and more. That winter I spent my days half cracked open. Then school started again, and I was too far gone. I dropped all my classes, and took the time off to heal bone and brain.

When I broke my wrist I was told, even with the surgery, that it would “never be the same again.” But what’s scary is that that same phrase can be applied to my mental health. That manic episode changed me, I will “never be the same.” So when I read that 17 year old girl’s account of how everything gets better, I looked at my own life. At the cyclic nature of my disorder.

And I realized something terrifying.

It may get better.

But it can, and probably will, get worse again.

It’s a pattern, don’t you see?

Good to bad, bad to good, good to bad… and so on.

They say bipolar is a chronic, life-long illness.

And they say that for a reason.

-Quinn

A Fragile Mind

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I want to take Xanax the way I used to. The irresponsible and reckless way. The dangerous way. The way I don’t advise anyone to ever take it.

I want to drown out how awful I feel. I may have taken a quarter off, not to heal my broken wrist but to mend my manic mind, but I am still fragile.

I took an incomplete in a class, but I have to finish it sometime. And that deadline is right around the corner. I am not prepared and I do not have the strength to care.

Part of me is giving up, ready to fail a college course for the first time. Ready to ruin my future as a psychiatrist or psychologist. But part of me is still squirming to hold onto my dreams, to finish this class, to stay in the game.

Just listen to the online lectures, take notes, and memorize everything. Yet I can’t even tell you the names of the diseases I’ve learned, let alone their symptoms or treatments.

This should be an easy class, even an enjoyable one, but some professors know how to make even the most interesting of subjects into a nightmare.

Maybe the mania is gone, a vague memory where I was someone possessed by the need to vandalize, pop pills, and stare at Christmas lights. But I’m not stable. I’m always a little up or a little down.

I don’t think it is possible for me to be perfectly stable. It’d be like trying to balance a coin on its thin side in a windstorm.

My bipolar is and never will be the productive type. Some people go manic, and get everything done. Me? I destroy everything I can, myself included, and I want the world to see that. And the depression? It just doesn’t care enough.

I go to two types of therapy right now. One for my wrist and one for my mind. It has taken months to repair my wrist, but the evidence is visible, I’m always going forward, I’m always improving.

But the mind isn’t like a broken wrist. I’ve been going to therapy for years and yet I can go backwards. Some days I even fall and break all over again, as if I never healed to begin with.

When I was hospitalized at 19, another bipolar patient took me by the shoulders, looked at me very carefully and warned me- “You’re already so young to be in here. It’s only going to get worse. Be careful.”

And maybe you’d think he is wrong for saying it’ll only get worse. But he wasn’t. It has gotten worse, just in a different way. Yes, my youth is an advantage. Getting help early on may have saved my life more times than I know. But he was right- It’s gotten worse and I do need to be careful.

But what is being careful when it comes to your mind?

-Quinn

Doing Well

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I am doing well

except

I am really tired most of the time

 

I am doing well

except

My hands tremble noticeably

 

I am doing well

except

I am a ball of anxiety

 

I am doing well

except

sometimes I am so anxious I tune out which makes me more anxious

 

I am doing well

except

I get overwhelmed at the drop of a hat

 

I am doing well

except

I would rather be numb than feel some emotions

 

I am doing well

except

I have trouble sleeping through the night

 

I am doing well

except

I spend my life on-line

 

that is what I mean when I say I am doing well