I went to an event recently where the following question was posed:
Are you a giver or a receiver?
I was impressed with the language of the question. To discard “taker” and to replace it with “receiver” was, to me, brilliant, as it took away so much of the charged morality around the idea of “taking.”
Yet I still felt a jab of shame when I answered that I was a receiver.
Throughout the event I felt myself on the precipice of an understanding that felt huge and yet almost too much to handle. I felt so much an outsider to the experiences and anecdotes of the other individuals in the room with me, because, I eventually realized, their definition of giving and receiving wasn’t quite the same as mine was.
I’ve always viewed myself as a draining individual. I am bipolar and autistic, and I often have an intense emotional energy, which can take a toll on those around me. I am also chronically ill and often require assistance or accommodation that can be taxing, either physically to provide or emotionally to witness. I tend also to be a financial burden, as my disabilities limit the work I can do and thus my income, and so my monetary provisions are often fulfilled by my family. I try to counteract these tolls and taxes and burdens whenever possible by asking for as little as I can afford to.
This extends to things I need, such as doctors appointments and accommodations, I will push through things I shouldn’t, simply out of a desire not to burden someone else with my problems. Many of the times I’ve harmed myself in the past, it was because I felt that asking for help would be too taxing for my friends or family.
This was the level to which I understood that I resist receiving, before I entered this event. What I realized while I was there, was that I have an even stronger resistance to receiving things I want but do not, in my judgment, need.
The most glaring space in which I do this is my relationship with my boyfriend. I have, until now, refused to tell him what I want out of our relationship, opting instead to tell him that whatever makes him happy will make me happy. This has lead to a lot of frustration on both sides, as he tries to lead our relationship half-blind and I try to get my needs met without saying what they are.
So when I went to this event, I realized that the common definitions of giving and receiving were much more broad, to include both needs and wants. A child needs to be cared for and wants to be taught to sing. Providing for these two things would both be considered giving. Having them provided would both be considered receiving.
Something I also noticed was that the common definitions of giving and receiving were much less about obligation and much more about desire. Of course, there is a lot of giving and receiving that is based at least partially in obligation, for example caring for children and going to work, but rarely, it seems is it solely obligation that motivates someone’s giving. There is always desire to give.
When I reflect on this, I think, of course, when I give, I always have the desire to do so, at least in part. When I give my employer my time and energy, I do so out of, yes, obligation because I have committed to do the work and I need the money, but also out of the desire to be productive and to earn the respect of my employer. When I give my friends advice, I do so completely out of a desire to connect to them and a desire for them to be happy and healthy.
Generally the argument is that a balance between giving and receiving is ideal, and I would agree that for those who are healthy, it likely is the best choice. I consider, though, that there are those who do not have the option to give as much as they receive.
For many chronically ill and the disabled, giving as much as one receives is an inconceivable task. Even if one pares down what one receives to the bare minimum, as I attempted to do so, it may yet be impossible, and due to that reduction, one may not have the energy to provide anything to anyone else, regardless of desire.
I would argue that for the chronically ill, a different type of balance must be struck. It is the kind of balance between one’s own quality of life and the quality of life of one’s loved ones. A chronically ill person still has the right to want things, to have passions and interests. Often this is forgotten. Chronically ill individuals are so often viewed as taking up so much energy already that they shouldn’t get to take up more energy doing frivolous things. But they have every right to do things that are just fun or interesting or exciting. However, their right to these things does not reach any further than their loved ones rights to those same things. I am not advocating that a caretaker give up all of their interests in order to accommodate a chronically ill person’s every fleeting passion.
I found myself, as a disabled person, forgetting sometimes that I am a person. With all the taxes and tolls and burdens I place on others, I started to see myself as simply a weight to be carried. Because I refused to ask for things I wanted, I never had enjoyable experiences, only survivable ones. And I never had the opportunity to have positive shared experiences with where others offered something generous to me. I lost track of who I was, and how I related to others.
I also lost track of the fact that I do, in fact, give. I may not give as much as an abled person does, but I do give what I can, when I can, and joyfully. I do not hoard my resources, receive only to never give any away. I can be a giver, too.
I am still trying to find the balance in my life, between asking for what I need and for what I want, and for giving enough in return. I am still terrified of asking. I am still learning to advocate for myself as a disabled person, to say that I deserve more than survival. I deserve joy. We all deserve joy.
Today, a close friend of mine made a post about a comment I made to her that really made an impact, and I thought I’d write a bit more about it at length.
What I had mentioned to her was a concept called forced intimacy. This is a type of manipulation where an acquaintance shares very intimate information with another person in order to create a false sense of closeness, usually soon after meeting. After sharing said information, the acquaintance then proceeds to expect said closeness to be reciprocated, either with personal information shared or with emotional support from the other party.
These situations usually feel uncomfortable for the individual being manipulated, as they feel that they have not established this intimacy through the time and effort that usually is required for that level of sharing/support/etc. and yet they feel guilt because they now feel obligated to respond by the other person’s vulnerability. This is exactly how the person who overshares wants them to feel. What then proceeds from such relationships is often a highly intense relationship that is not based on trust or common bond, but rather on heightened emotions, requiring every interaction to have high intensity in order to be maintained.
I’ll give an example of an experience that I went through recently, where I encountered forced intimacy:
I went to a support group for one of my disabilities, and afterwards, an individual caught up with me afterwards, alone, and started chatting with me about some things I had said in said support group, including the fact that I am autistic and bipolar. They then proceeded to tell me at length about how they had supported a past partner through grad school, who then proceeded to leave them after graduation. They told me about how this partner had bipolar disorder, and told me at length about the partner’s mental health issues. At several points I tried to cut the conversation short, asked no questions, and only gave noncommittal responses.
Eventually this person, after sharing with me for over an hour, switched the conversation over to attempting to extract information from me, about my dating life, about my diagnoses, about my treatment, etc. At this point, I did manage to extract myself, but this person did follow me and continued talking at me until I reached my car, at which point I finally made my escape.
Now, I had done, to my knowledge, nothing to indicate that I had any interest in having a conversation with this person besides perhaps a polite smile and nod, and had not directly spoken to them during the meeting. They had likely chosen me because I was new, and thus likely looking for connections.
Now, let me be clear, I have no idea whether this person did these things understanding what they were doing, or whether they were behaving manipulatively out of habit, as so many of us do. Many people, especially those with mental health issues, behave in manipulative ways in order to get the support they need because they have learned that is the only way that they can acquire it (at least in the form they want, which may be via friends, and not therapists).
I am by no means saying that all manipulators are people who are social puppeteers who know exactly what they are doing when they are doing it and have some big end game in mind; in fact, I would say the majority of manipulators are the exact opposite of this. I would say most manipulators know what they want for the next few steps; they know how to get from Point A to Point B. But this sort of manipulation is still unhealthy at best and abusive at worst.
Becoming aware of manipulative behaviors is an incredibly eye-opening experience, and coming to understand that we all, in fact, behave manipulatively at points has motivated me to become a more genuine person. As much as I may seem to others to be mistrusting or cynical, I believe that learning to see manipulation as it is and to learn not to respond to it, and, in fact, to reject and avoid it, will not only improve my quality of life, but will encourage others to learn to behave in ways that are less manipulative and more genuine in order to get what they want from me.
It is the day after Easter Sunday and I’m thinking about redemption.
I’m not a religious person by nature. Something about this holiday struck a chord with me.
I believe in redemption. That may seem like a strange thing to say, like redemption is a matter of faith. But for me, it is.
I am reading a series of novels right now by Stephen R Donaldson called The Chronicles of Thomas Covenant, which is a story of redemption. It features a man who has been plagued – but not overcome – with leprosy. He is a man who was once a beautiful human, turned wretched – physically, emotionally, and spiritually – by illness. He lost everything to leprosy, first in the physical realm – his wife, his child, any social ties – and then he pushed himself to become almost mechanical, nearly sub-human, in order to survive.
Early in the first book of this series, Lord Foul’s Bane, Thomas Covenant commits an act so atrocious that I – as a reader – was not sure I could forgive him. I’m still not sure I have. And yet, somehow, the characters in the book maintain faith that there is good within him. They hold not only to their precept of peace, but the majority of them somehow forgive him.
I have not finished the series, but I believe Covenant will be redeemed.
I’m afraid I am on a similar journey to Covenant. Although there is no singular event to pinpoint as the height of my instability and grotesque illness, I have definitely been near where Covenant was. For Covenant, he was not dead, but on the brink of dying, and fighting to stay on life’s edge of death. For myself, I was not dead, but on the brink of living, and unsure what side of death I wanted to be on. We both made ourselves sub-human, for a time. And in becoming sub-human, we immersed ourselves in self-loathing.
My story of redemption has sat squarely in the realm of allowing myself to be vulnerable, uncomfortable, and honest. A big part of this, I realize, is accepting that, while I have a unique set of life experiences, this does not mean others cannot engage with me as a whole person. I do not have to pare down myself into bite-size chunks and only dole out the ones that I think people want, hoarding the rest to go rotten.
I struggle to write on the topic of the redemption of others, as I have much more fear that it may not be universal, redemption. I fear that redemption is not available to all. It is a fear that sits deep in my chest. But in the end, I choose to have faith. I have faith in redemption. I guess, in the end, I have faith in myself. In humanity. In the world.
There’s a version of me that only exists in past tense. I think that’s true for everyone, but I realized recently that the difference is much more stark within me than it is within many. My past tense is a stranger towards whom I reach, simultaneously trying to pull inwards and push away. The realization that I cannot become who I once was is viciously painful. Sometimes I wish to forget that I have a past tense, as I realize more and more that the virtues I hold dear were stronger in me past tense.
There’s a version of me that only exists in the present tense. I came to the realization that I do not like who I am, present tense. And I have not liked who I am in the present tense for a while. This is not a new realization; it’s one I come to every few weeks, and I make changes and hope for the best and those changes stick or they don’t and I still don’t like myself present tense.
There’s a version of me that only exists in future tense. I’m not sure this is true for everyone, but it’s true for me, and it seems that my future tense is so wildly separate from my present tense that it could be a whole different person. My future tense has all of my emotional and physical limitations, but none of the character flaws. When building my future tense I didn’t plan to continue being unhappy with who I am.
I don’t believe I can reach my future tense until I become happy with who I am present tense, but I do not believe that has to or should involve giving up my values in order to find peace with my faults that I find intolerable and unethical. I also have come to the painful but necessary realization that the flaws I dislike about myself, others dislike about me as well.
I have become my illnesses. I have become narcolepsy. I have become bipolar disorder. I have become arthritis. I have become chronic pain. I have become post-traumatic stress disorder. I have become sickness. My personality is Unwell. And I am not proud. I am utterly ashamed.
I try to have empathy with myself, to realize that my life for the past few years has been a barrage of injury and illness. And on a level, I do understand that there is a reason I became the way I am. What that does not mean, however, is that I am excused to continue dwelling in despondent self-loathing. I am no longer excused from trying. And I don’t just mean trying on my own behalf. Trying means working to understand others. Trying means cooperation. Trying means being willing to be uncomfortable. And on a larger scale, trying means trying to work to improve the world as I see myself capable.
To be clear, I do not seek to divorce myself from my body, or from my illnesses. What I do seek is to divorce myself from the idea that my illnesses culminate into the total of my self. I have chronic illness, and I cannot and will not act otherwise. However, I am also a human being outside and alongside my illness, and these aspects of my self require time and space to thrive.
My future tense is a very long way away, and to be honest, I will always have some of my character flaws, although they may be smaller, more manageable shadows of the hulking barriers I currently have. Eventually though, my future tense may become my present tense. And in my future tense, I like myself uncompromising. If none of the rest of my future tense becomes my present tense, I dearly hope that I can one day like myself, present tense.
Growing up, I was taught that going inpatient at a psychiatric facility was a form of punishment for people who couldn’t hold it together, that it was shameful, to say the least. No one ever told me these things, but they were taught to me in the way that my dad insisted that if I let myself get too sick, I’d have to go to the hospital, or worse, that he knew I was strong enough to hold myself together and keep myself out of the hospital.
By the time I was twelve I had a pretty strong case of EDNOS (Eating Disorder – Not Otherwise Specified) where I would fluctuate between extreme restricting and binging. I would lose incredible amounts of weight and then gain it back with excruciating rapidity. I was also self-harming. This is when I first went to see a therapist. My tactic at the time was to deny everything, which, to a certain extent, got me what I wanted, which was to be left alone.
I didn’t return to therapy until I was fourteen, and at that point I was put on Zoloft, and my parents were assured that this was a teenage thing, and it would likely clear up in nine months. Two years later, I was successfully weaned off of Zoloft, and a year later stopped going to therapy. We all assumed they were, for the most part, correct, and that my mental health issues were just adjustment issues.
In the midst of my second semester of my freshman year of college, a few months before my ninteenth birthday, I started to deteriorate again. The symptoms were different, but similar enough that I thought they were the same problem as before, and assumed a couple pills and some tune-up therapy would do the trick.
I only got worse though. And this is where my story truly begins – this is where my distrust of the psychiatric community really grows its roots deep.
It started with my sliding scale therapist, who, to be honest, was sub-adequate at best. She listened to me talk and then I left feeling like I had, well, talked. That’s not enough to induce distrust though, there are mediocre professionals in all fields. What happened, is that I told her I wanted to kill myself, and asked her for her advice, and she told me to wait two more weeks until I could see one of the psychiatrists in her practice.
To add insult to injury, when I went to see said psychiatrist, he prescribed me ten milligrams of Prozac. Now, let me give some insight. I was, at the time, a 300lb, 5’11” woman who has shown suicidal ideation, and ten milligrams of Prozac is the smallest dose one can be given, and usually doctors start at twenty milligrams for adult patients. He told me to come back in a month and tell him how I was feeling. If you’re following at this point, this man essentially gave a pill with the functionality of a placebo to a suicidal teenager.
Two weeks later I was in the emergency room, where my next, and biggest, assault from the psychiatric community came. I had come to the emergency room due to paranoia and hallucinations (that was discovered much, much later to be caused by narcolepsy, not psychosis), and it was discovered that I had been cutting myself. It was 11:00PM on a Friday, the emergency room was packed, and I was escorted to a cell with padded orange walls and flooring, with a table, chair, and medical bed bolted to the floor. My best friend accompanied me, although she was asked to leave during my interviews with the psychiatrist on call.
The interview with the psychiatrist was hellish and, to be quite honest, extremely traumatizing. He manipulated my words, asked me questions repeatedly if he didn’t get the answer he wanted, asking them different ways so that maybe I would answer “yes” to a question I had previously answered “no” to. I would like to note that, by this time, I had not been suicidal for several days. But he kept asking me, did I want to kill myself? did I want to die? did I wish I didn’t exist? And the answer was always no, no, no. Finally he asked after over an hour of interrogation, at 2:00AM, “You sometimes think though that it would be better off for everyone else if you weren’t around though, right?” to which I said, exhausted, yes.
He wrapped up our interview pretty quickly after that and declared that I needed to be hospitalized. Then came the next portion of the manipulation, the guilt tripping. It turned out he didn’t actually have the authority to forcibly admit me, and he would need to get the authorization from the head psychiatrist to do so. He presented this information to me as the following paraphrase:
The head psychiatrist is the only one who can involuntarily admit you into a psychiatric hospital, and he’s off right now with his family, definitely sleeping – it is really late, you know – and I’d have to give him a call and wake him up and go over everything you and I just talked about so he can authorize my decision to involuntarily hospitalize you. Do you really want to have me do that? If not, you can just voluntarily agree to be hospitalized by signing this form right here.
I was very easily manipulated at eighteen. I signed the form, feeling guilty about wasting everyone’s time. It took another eight hours before I was transferred to the psychiatric facility I was to stay at, during which time I was completely ignored in that tiny room, denied food until my best friend nearly assaulted the locked door to get their attention, and denied the bathroom until she assaulted the door again, and then I was humiliated for asking for a maxipad by the security guard, who first berated me for not saying I needed one before I left the locked room, and then shouted across the room to a male security guard to retrieve one for me, all while I sat in an open-doored bathroom, because I was a “risk to myself.”
My first psychiatric hospital stay was mostly uneventful. I was quickly moved to the “low security” section of the hospital, where it was primarily drug addicts and people with low level mental illnesses who were not a danger to themselves. My psychiatrist at the hospital at least could tell that I wasn’t suicidal and wasn’t in the mood to manipulate me into saying I was.
The day before I was to be discharged, I had an anxiety attack and scratched my outer wrist open with my fingernail, probably a circle the size of a penny, and just barely deep enough to bleed. It was a fiasco, and I was sent back up to the “high security” section and my discharge date was postponed. Soon after I was sent back to the “low security” section again, and discharged. I was there a total of two weeks.
I followed up my inpatient stay with an extended participation in Intensive Outpatient Therapy, during which time I maintained close contact with my psychiatrist from inpatient. Now, I mentioned that my psychiatrist wasn’t in the mood to manipulate me. I could more accurately state that he wasn’t in the mood to interact with patients at all. He had, as the therapists described, a “poor bedside manner” and is one of the most impatient people I have ever met. I was terrified of him, but he was highly respected in the psychiatric community as being somewhat of a miracle worker for difficult cases like mine.
Perhaps six months later, after I had been long discharged from Intensive Outpatient and only saw my psychiatrist once a month for medication management (I was still seeing my inpatient psychiatrist), I went in for one of my monthly appointments, and I mentioned that I wanted to die, but had no desire, intention, or plan to kill myself. He had me escorted to the inpatient facility and I spent two weeks there. After I was discharged with a new set of medications and a new referral for Intensive Outpatient, I became actively suicidal, and returned to inpatient a week later. This time, I only spent a week there, as they were worried I was becoming “dependent on the hospital.”
There was a dynamic going on within the inpatient facility that I did not acknowledge at the time, nor long after, that likely should have been acknowledged and addressed by the therapists. I had become obsessed with one of the therapists in the hospital. I had gained his permission to call the hospital on occasion to check in with him, and this quickly became an issue of me calling him several times a day if I did not get in contact with him the first time. When I was inpatient, I would become depressed if he was not working that day, and would become excited when he was, to the point of following him around and creating scenes so he would pay attention to me. This was a huge problem and a major inhibition to my recovery, and no one in the hospital even acknowledged it was happening.
I am by no means trying to claim I had no agency in this situation. I did. I could have chosen to seek treatment elsewhere or to cease contact with him. I honestly don’t know if I had the self perception at the time to understand that I was obsessed with him. Perhaps I did and I was in denial. He was beautiful, cocky, intelligent, patient, and I viewed him as the one who would save me. I believed myself in love with him. I even managed to find out his last name at some point, due to a horrible slip up by a receptionist on the phone.
It was due to this obsession mixed with my psychiatrist being trigger-happy on sending me inpatient that I spent six total stays inpatient at that particular hospital, each between one and two weeks long, over the course of two years.
My sixth and final stay, though, was triggered by something else entirely.
My therapist had been referred to me by the hospital, and I later learned she did evaluations for the hospital herself, and had close ties to the hospital. She was a cognitive behavioral therapist, and I believed her to be the best in the world. She did make a lot of mistakes with me, it turns out, but the biggest one she made was at the end of our therapy.
I had called her a few days earlier telling her that I had started drinking again, a habit I was trying desperately at the time to stop, as I was a heavy binge-drinker. She had seemed distant and said we would talk about it when I came in that week. When I arrived, however, she announced to me as I sat down that she was closing her practice, effective immediately, and that this would be our last session. Shell-shocked, I accepted the news without comment and barely said anything else the rest of the hour. Two weeks later I made my first suicide attempt. I had thought about it plenty before, but I had never followed through on my thoughts before. The one person who I thought was supposed to be the most stable person in my life had just pulled the rug out from under me and I didn’t trust that life was going to be worth it.
After that stay in the hospital I moved back home with my parents, where I found a new therapist, who I am still with now, and who I find to be wonderful, but who I severely distrusted for over a year. My first appointment with her consisted of me telling her that if she wanted to be my therapist she had to never do what my last therapist did to me, and she agreed, so I decided to stay.
After my twenty-first birthday, I started drinking heavily again, and had a brief stay in an inpatient detox at a different hospital, which I have nothing negative to say about, except that I heavily resented being forced to go to AA, as I disliked their mantras and their serious superiority complex.
A good time later, I had a traumatic experience with a teacher that I will not go into here, and I was looking for partial hospitalization program, and the first one I went into was, well, horrifically useless. The majority of the six-hour day was spent in “classrooms” listening to lectures about mental health in a room with forty plus people in it, and no individualized treatment. In each day there was an hour or less of any activity where individuals could even participate. It was disgusting and I viewed it as a complete rip off, and after two days I left the program, and sought out something different.
After hearing of my dissatisfaction with the program, my insurance allowed for me to go to a different program and I was pretty happy with it, but soon after they billed my insurance for services I did not receive, which my insurance didn’t cover, and then proceeded to send the bill to me, and I had to have a big fight with the hospital, literally days after I had just been discharged from their partial hospitalization program for mental health. I felt like a lot of the good the program did was undone by that stress and sense of betrayal.
My final stay in a psychiatric facility was when I was twenty-two. This was at another hospital separate from all the others, and my only complaint about this hospital was that the emergency room literally had no psychiatrist on staff overnight, so I had to sit in a hospital room overnight. But they had me in a hospital room, not a padded room. It was not locked. I was checked on regularly and they took my shoes, but that’s to be expected. The attitude of this hospital was “how can we make sure you don’t come back here” as opposed to the other hospitals I’d been to, where the attitude was “how can we fix your current problem” and that is a very important distinction. After staying at the second hospital I never had another inpatient, intensive outpatient, or partial hospitalization stay.
All of these experiences have led me to believe that psychiatry as a whole tends to undermine the agency of its patients. I have written further on this topic here.
I’ve always been a staunch activist for assisted suicide. I believed aggressively that assisted suicide should be available to pretty much anyone who is of sound mind to choose it.
This article made me question some of those things.
I wondered, for example, if my grandmother, who I think would have chosen assisted suicide, would have been “of sound mind” by the time she got to the point that she desired that option.
I wonder if I could ever choose that option and be of sound mind.
I remember when I was 16 and my grandmother was dying, she couldn’t remember who her children or grandchildren were, and she was in excruciating pain. I said to my sister that if I ever got like that I would hope someone would kill me.
I wonder, now, if I had known how my body would feel at age 24, if I would have wanted someone to kill me now. Right now I don’t want to die, despite the pain I’m in on a constant basis. Despite the neurological and psychological difficulties I face on a daily basis. But if I could have requested suicide in advance, would I have, knowing my current situation in advance?
Another question that plagues me, is what would have happened if I was so disabled and I was not in as supportive of a family. Would I be more likely to choose assisted suicide, or worse, be seen as a burden by a less-supportive family or system and coerced into suicide? These are things I never considered when I first made my pro-assisted suicide stance.
I believe, for example, that my grandmother should have been able to make the choice whether or not to receive assisted suicide. However she had Alzheimer’s, and I don’t know if she would have been considered of sound mind, and whether she should have been. I don’t believe my family capable of coercing her into such a thing, but how are medical professionals supposed to determine that?
I wish I knew more about how medical professionals determine whether someone is being coerced into a treatment, as this is a venue in which I feel under-educated. It may very well be that there are not a lot of stop-gaps in place to avoid coercion, but if so, then this is a much wider problem than just assisted suicide. How does one determine if a person is being given or, alternatively, refusing life-saving treatment due to the will of an influential family member? These are issues I have never considered and I grow increasingly worried about as my own health deteriorates and as I become more concerned with disability issues.