My View from the Ceiling

by Shaker J

Liss wrote about how personal accounts are important and I took her up on her offer of publishing guests posts telling our stories. Mine's a difficult story to tell, but I suppose that most personal narratives are. I want to share this because I never see stories similar to mine being told from the first-person perspective. I would rather share this story as my own than have it shared later by someone else recounting and reflecting on my experiences.

I have mental illness. Whether it's unipolar depression—my only actual diagnosis was 'acute major depression' or possibly 'major depression (acute)'—or bipolar disorder II, or whether there are undiagnosed illnesses thrown in, it's unclear.

I'm a poor patient; I lie to doctors (and loved ones who ask about my health, for that matter), usually by omission. I don't call when I say I will, nor call when there's a complication with something. Anxiety often keeps me from picking up the phone if the doctor calls. I also don't take my medication regularly. I have enough trouble taking meds for physical issues, meds which do not cause side-effects in me and only ever improve my quality of life and decrease my chances of dying young. When it comes to psychiatric drugs, well, all sorts of issues come together so that I don't take them.

Part of it is the stigmatization of mental illness and also the stigmatization of being treated for mental illness (consider the phrase "someone forgot their crazy pills this morning" or how the world at large treats people who need or are in therapy), part of it is that the few drugs that work for me have physical side-effects, and part of it is that I know my mind is working differently on the drugs. Who I am, how I think, how creative I am, how much energy I have, how well I can remember things, what sorts of things I care about.... I feel these are all different when I am on medication than when I am not. It's a serious identity crisis every time. Sometimes I find this worth it, sometimes I don't, and sometimes it doesn't even play a role; I just am not taking my medication, because I can not take my medication. When I've asked people to help me remember to take my pills every day, I end up resenting them, lying to them, and pushing them out of my life. Thinking about it now, it's probably mostly issues about autonomy when it comes to medication.

My doctor was always keen on telling me that when I'm in a state of depression, I am not seeing reality. I very much disagree with this, and I think it's also a major part of why it's so hard for me to accept the differences in cognition I feel when on drugs. Suggesting that what I experience when depressed is somehow not real feels dismissive, hurtful, and suggests to me that over half of my life, I have not been living in reality. I'd always decided it was easier to just listen silently when he talked to me than to argue, so that I could have access to drugs I wouldn't take and prescriptions I wouldn't fill.

In January of this year I had a major break-down. I can't even remember if I was actually taking my medication or not; I probably wasn't, and if I was it definitely wasn't at the prescribed dosage or regularity. I missed an appointment with my doctor because I was unable to get out of bed, unable to function beyond what it took to answer the phone when my boyfriend or parents called to tell them I was okay, just busy. I never registered for classes. I received several phone calls from my doctor and from people looking to hire me. I didn't answer any of the calls out of anxiety. I was paralyzed by fear from answering the phone, from talking to someone when the whole conversation wasn't on my terms, on my time-line. My doctor eventually called my emergency contact, who called me. I promised I'd call the doctor—and I did—but I had to leave a message and again couldn't answer the phone when he returned my call.

Mid-February I got a letter by certified mail. It took me two weeks to open it, and it was because I had to convince myself that it was a bill, and that bad things would happen if I didn't pay it. Rather than a bill, it was a death sentence.

My doctor told me that he was going to refuse to see me after a date in mid-March (it's been over a week since this date as I am writing this.) He stated that it was important for me to follow through on my treatment, and since I am not doing so, will not treat me. He suspects I am no longer taking my medication, but, if I am, don't stop them before seeing a new doctor. He suggested a PCP refer me to a new doctor, and he would be happy to provide my medical record to whichever doctor requests it. (His willingness to abide by the law is amazingly generous, I know.) I sobbed for days.

Since getting that letter, I've been in various states of freefall. I've lied to people I care about; no one knows I don't have access to the drugs I need, or that I don't have a doctor. Some people are aware I'm "looking for a new doctor" because I didn't like the old one, but I'm terrified to do so. How can I trust doctors after this experience? This isn't even the only time where I felt thrown under a bus by my doctor.

Beyond the trust issue, there's the investment issue as well; I really don't want to pay the money (or put in time) for a doctor who will just drop me because I am unable (or maybe just unwilling—at this point I'm pretty sure that for me there's not much real difference) to take care of my end of the treatment all the time. I did call one doctor's office the other day, but I was not allowed to talk to the doctor to see if he was a good match for me before making an appointment, and also would have had to wait three weeks before I could see him. The alternatives offered by the office were not ones I found acceptable or feasible. It sounds like a small hurdle, but in terms of my emotional well-being it was a wrecking ball.

Every day I suffer. My inner monologue provides me, unbidden, untriggered, with such gems as "I hate [anything/one I'm interacting with]," "I hate myself," "I hate my life," "I want to kill myself." Living with this for as long as I have, I've learned to ignore these thoughts, get rid of them, and not dwell on them. I go through periods where I hoard medications and knives, and periods where I don't. There are days where the only way I can get out of bed is by reminding myself I can't kill myself if I don't get up.

But the hardest part is seeing the people I love suffer. Knowing that my family, what friends I've held on to, my boyfriend all feel helpless, frustrated, and guilty because of my illness. Sometimes I pick fights because I know that I'd never kill myself if someone I love would blame themselves or feel guilty for their last interaction with me.

All that said, I'm usually not seriously suicidal, and am not right now; I've only ever made one real attempt, which was a failure, and all the other times I thought I'd seriously kill myself, through luck or warning sign behavior, I've been unable to go through with the plan. I'm afraid of dying. I'd rather get better than die. But I don't know if I can. I sabotage myself. I don't want to die, but I don't know that I really want to get better either. I recognize that's a product of my illness, but even when I've been on a medication that actually seems to work, it's never enough to make me think that that's a better alternative. I don't know what to do, and I'm scared, and I hurt. I sometimes consider going to a hospital, but knowing my track record, I know I'll lie and then I'll leave before I end up in a better place. I do keep barriers in place, give myself certain responsibilities that I know I won't shirk. But sometimes it's like trying to cling to the ceiling.

I hate when people talk about people not taking advantage of opportunities, or people not taking care of their own health. It's not that easy for all of us. I've been handed a ticket out of hell, but thrown it away, because, well, it's hell.

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[Editor's Note from Liss: When J approached me about doing this post, one of the first things I wanted to establish was that she is not currently in critical crisis. She assured me she is not and now has support around her all the time: "I recognize that I need this and am keeping it in place." We've talked about her continuing treatment by finding a new doctor and resources. All along the way during this process, I've reassured her I would not be disappointed if she changed her mind; I gave her the option of posting with a closed comments thread, which she declined, and I have made clear that I will pull the post and/or close the comments thread if she feels triggered at any point.

Because she approached me, she was concerned that I may face blowback or have people question why I posted her piece. My response to that possibility is that part of the reason people with mental illness are stigmatized is because there's so much ignorance about what the reality of mental illness is; we can't change that if people with mental illness are not allowed to tell their stories. Because depression is a disease in which feelings of alienation and loneliness are frequently defining facets, the suggestion that its discussion, even when painful and sensitive, is unfit for a community space strikes me as cruel.

J is not in crisis, wants to share her story, feels neither pushed nor exploited, and knows she can ask me to shut down the post/comments at any time. She has also approved this note for publication.]