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language
  • Is it me or Isn't it me?

    “It is you. Not everyone has your diagnosis.”

    We go back and forth in the mental health community about language all the time, how it can hurt, how labels matter (or don’t for some). One infallible truth however is that words do hurt and we can’t take them back. I did an exercise with my children on the day prior to school starting to demonstrate this very point, taking a tube of Aim toothpaste, squeezing the entire tube onto a plate. I asked the kids if they thought they could get the toothpaste back in the tube exactly as it been previously. They laughed and told me “no way!” We reviewed that once words are out there, you cannot put them and some people will never be the same. We took the time to talk about being kind, thoughtful citizens of the school community. I do not know three days into the school how long the toothpaste experiment will last, but we are working on it.

    “It is you. Not everyone has your diagnosis." 

    Not everyone has my diagnosis. It’s true. As of 2014, there are an estimated 5.3 million adults in the United States with bipolar disorder. This statistic does not differentiate between bipolar 1 and 2 disorder. (www.treatmentadvocacycenter.org/resources/briefing-papers-and-fact-sheets/159/463)

    I somehow do not believe words like this can be slung so carelessly at someone however in my situation. Those eight words leave someone, including me, with the impression that my disorder and my symptoms are my fault. I’m 41 years old. I know when I am being a jerk for the sake of being a jerk. I also know when I feel utterly helpless and cannot control my swirling tornado of emotion, thought and word due to a mood episode and resurgence of symptoms. Thus begging the question, is it really me?

    There is nothing I dislike more than my diagnosis and the impact it will wreak on my daily life from time to time. There is nothing worse than hearing your child ask you where Mommy went because “this isn’t my Mommy right now” when you are in a manic rage. It stops you in your tracks, kicks you in the stomach and renders one unable to breathe. It hurts because I didn’t ask for this. I did not ask to become ill. My children didn’t ask for an ill parent either. All of us (the kids and myself) asked for love and some understanding of our behaviors. The kids, because they are immature with developing brains and will do obnoxious things at times. Me, because I cannot achieve remission again without love, patience, time and a solid treatment team.

    “It is you. Not everyone has your diagnosis.”

    Not everyone has my diagnosis, and the things I CAN control are simple: putting down the phone and staying away from social media when it’s bothersome to me and liable to set me off. Sitting down every single night with the kids for dinner. Instituting family time every single night regardless of how tired I am. Bedtime snuggles and hugs. I can show my kids how much Mommy is always there, even when my brain is misbehaving, neurotransmitters have run amok and makes it physically impossible.

    I can’t put the toothpaste back in either. All I can do is work as hard as possible every day to make sure I never squeeze it out in the first place.

  • Facebook, Social Media and Mental Illness

    Facebook, or social media use in general, brings out the best and the worst traits in humans. When one throws a mental illness into the mix, it can be both calming at times and incredibly triggering.

    As someone with bipolar I disorder, reasons why I like it:

    I have a good family, none of whom live nearby. It often provides a chance to see what is going on without picking up the dreaded phone. Sure, the phone is in my hand as I scroll through the newsfeed but one, that’s just a detail. Two, I have severe phone anxiety and three, the idea of calling to order pizza sends my heart rate soaring over two hundred. Surely you cannot reasonably expect me to have an actual phone conversation just because we share DNA?

    The same can be said for my friends. It is a useful tool to reconnect people whom you remember. Friendships are renewed, revived. We all grew up. For folks like me who came from a small close-knit community, it is nice to see how people are doing. Most of us even got better looking with age. (What is that saying about women and fine wines? EXACTLY.) Let’s face it, we all produced adorable children who may not always behave adorably, but they sure do say some hilarious things that must be shared. And I love seeing all of it, from all of you. And again, that no phone thing.

    Cat videos. Movie trailers. The New Yorker (I heart Andy Borowitz 4-EVA). Thoughtful debate. Divisive debate. The conversations it provokes privately in homes. The friendships it renews. Dog videos. For the love of pugs.

    And lastly the awe-inspiring community of like-minded advocates I have to both grow with and support me. We are all on different journeys and came together through various paths but share one common goal: better care for the seriously mentally ill.

    Reasons why I don’t like it

    Everyone loves a good funny meme to chuckle over. Why not? We need more laughter in such a serious world. My sense of humor is just as good as the next person. What I do not enjoy is the proliferation of mental illness themed memes meant to provoke laughter and merriment over actual illnesses people suffer with. We are battling our minds on a daily basis. People do not post memes inciting laughs and teasing those who suffer from physical ailments. Could you imagine the outrage if you saw one for childhood cancer? Or cancer in general? Parkinson’s? ALS?

    I do not always want to be the heavy. I do not relish pointing out the insensitivities simply because I made a conscious choice to be open with my diagnosis, protecting the many, many confidences entrusted to me since I went public. Yet I will, for that is a privilege of one of the highest honors people could give me.

    The math is simple. 1 in 4 adults have a diagnosable mental disorder in their lifetime. ONE in FOUR.  So if Ann has 640 Facebook friends that means 160 would carry a diagnosis. If Bob has 200 Facebook friends, 50 would. Look around the room you are in. Can you even tell who may or may not carry a diagnosis? OF COURSE NOT! No one will trust you enough to tell you either to use you as a support system when you are then one making fun of their illness publicly, especially without their permission even if you are not even referring to them.  Yes, humor is needed to get through the dark days. My husband and I are known to make horrible jokes about my bipolar disorder to each other to get through the hard times. It stays private, between us.

    There are a couple of memes I want to call your attention to:

    When I put my patient “hat” on, I just do not see how one willingly goes to the hospital unless they know their situation is so dire they will not turn around without hospitalization. Typically, admission occurs with an individual frightened, in tears and feeling that they will die unless they go. Patients genuinely feel backed into a corner and completely out of options. They feel that all medications have failed them. Some patients are involuntarily admitted for concerns of safety and harm, be it themselves or toward others. 

    In my case, each and every time the only reason I signed paperwork for a voluntary admission was because I was told it was better for me that way. I never wanted to go, not once. Not one of my four admissions. The last admission I had my hospital chart stated that if I tried to leave grounds and go home prior to the time a transfer to a psychiatric bed could occur, the police would be called, I would be barred from leaving and committed involuntarily. So much for the voluntary paperwork I signed.

     

    There is no cool table in the cafeteria. There are tables. Period. People find a seat, eat and leave. Conversation is at a minimum. You might trade muffins. You might barter for cigarettes if you smoke. You might talk meds if you are feeling really feisty and got caffeine in your coffee. At the end of day, you are in a psychiatric facility and what is there to discuss?

    The one I take the most offense to tried to gain traction as a game on Facebook. I found it so triggering, I actually defriended numerous people over this.

     

    I’ll paint a more accurate picture of how this would look for you

    YOUR ROOMMATE: Up all night crying with a sitter at their side because they attempted suicide and wound up in the psychiatric hospital instead. They are frightened to death to be there. You can’t tell if it is their first hospitalization or their fifth. Perhaps they are most frightened that they are still alive. The tears you hear all night are of a soul in deep, deep pain.

    PERSON LICKING WINDOWS: Is in such severe psychosis it makes you uncomfortable. You wonder why no one is doing anything to break the psychotic state or is his or her mind irreparably broken at this point. You begin to cry yourself.

    PERSON HELPING YOU ESCAPE: Isn’t really helping you escape. They are telling you everything that they think you should know because 1. they want you to view them as the Alpha of the unit and 2. all the things they tell you to the doctors on rounds have absolutely nothing to do with you or your case.

    THE DOCTOR: A person who shows up for five minutes a day, asks how many groups you show up to and increases your off unit privileges based on the answer. Also asks you five or six questions to determine discharge readiness and medications. Never answers family phone calls and punts them to the social worker that avoids you.

    PERSON RUNNING AROUND NAKED: This might make for great cinema, however with 4 hospitalizations and counting I have yet to see this. We get to wear our street clothes to avoid feeling completely marginalized. The more accurate picture is The Person Who Wore the Same Outfit for the Most Days In A Row. See also: Psychosis, because the unit washing machine is bugged and contaminates the clothing.

    PERSON YELLING NONSENSE: This could be anyone. This could be from meals consistently being delivered late when it is all anyone has to look forward to. It could be because no one showed up to visit again and you’ve been there for three weeks. It could be because the same three patient monopolize the one phone on the unit for all 30 patients. Perhaps you are sick of having to do the same kitten puzzle every day from the 1980s as an activity. Maybe five days into your stay, the 6th day suddenly your ponytail is deemed a safety hazard after five days of a nonissue. Maybe you just want a nurse to listen and not push medications.

    PERSON YOU WENT CRAZY WITH: What the Sam Hill is that even supposed to mean? Someone went crazy with me on purpose and got admitted with me on purpose? Now I know the inventor of this little game is just an a$$hole, pardon my French.

    Now I believe we can all agree we have been properly educated and shall think the humor and memes through a little more. After all, I have the best weapon: a graphic designer husband and I am not afraid to use him.

    He is a professional photographer to boot and has made some pretty inspirational memes when asked.