Hospitalizations

I have been hospitalized four times in my life and partially hospitalized one time. They have all occurred in less than 2 years of time.

One hospitalization and the partial hospitalization were for mental illness and they happened last summer [2017]. Two other hospitalizations in 2016 and 2017 were for medication-induced pancreatitis. The last hospitalization was for a diabetic foot ulcer in the fall of 2016. This also included a PICC line, a lot of at–home nursing care and a long healing time. I had to go on medical leave from work which was really hard for me to do.

I am not a fan of being in the hospital. There are a lot of rules and regulations and a lot of boring down time and prohibitions from leaving the floor, “for your own safety.” Hospitals can feel like prisons, right down to the horrible institutional food. Privacy is a constant issue and there were always people coming in and out of my room. My absolute favorite was when the overhead light came on at 5 AM and someone came to draw blood from. I had earned the title of a “hard stick” and so taking multiple sticks was the norms. Me, not a morning person, being flooded with light and then having a needle repeatedly stuck in my forearm was not my idea of a fun time. Then there was the time they would not let me take a shower and told me to take a bath in the sink only.

In the mental hospital we could not have any of our stuff. They went through our suitcases with a fine tooth comb. Everything was seen as a source of potential harm and as something you could use to hang yourself with. A little string with lovely origami that a woman sent me was seen as a source of potential harm. They took it and then did not return it to me when I checked out. I literally got it in the mail about 2 months later. No phones except for a tiny phone booth I could not fit in and very little computer access. I can see why they did the limited phone and computer access because they wanted people invested in their recovery. I went to various talks and workshops throughout the day and found them moderately interesting and helpful. Thanks to my insurance, I was only allowed to stay a week even though I needed more time. From there, I went into a partial hospitalization program.

The partial hospitalization program was from around 9-2 or 3 every day. There were about 12 of us that sat around a big table and were lectured to my several staff members. It was hard to make connections with other patients because they were constantly coming and going. The psychiatrist was absolutely useless and did not help me one bit. The social workers/nurses like to talk a lot and there was not a lot of engagement. I found it minimally helpful but did appreciate the emphasis on self-care. Unfortunately once I finished the program and had to go back to work most of my self-care went out the window.

As far as the mental hospitals, both in-resident and out-patient, they were a little bit helpful while they were going on but when they send you back into the world it is a different story. It is hard to transfer the skills to an outside life where all the stress and difficulties return with a vengeance.

Someone once asked me: which is harder – the mental or the physical health problems. I thought about and realized I didn’t even need to think about. Mental problems are harder hands down. When I had pancreatitis and a diabetic foot ulcer, they fixed me up. They essentially cured me. Now, I have the possibility of both returning. But I have confidence that they can fix it quickly or take a longer length of time. There is no fixing mental illness. There is no cure. Man of us relapse constantly. To be honest, I would not wish severe depression on my worst enemy. I could picture additional hospitalizations in my past and dark thoughts of self-harm. With depression you often have to take it one day at a time and even one minute at a time. While the hospitalizations taught me some things, they do not cure the future. I do not fear future hospitalizations; I fear that they will continue to leave me in a vulnerable state where by I continue to struggle mightily in an interminable battle for my very life.

I wish I could end on a more positive note, but as my friends know, I am all about keeping it real! If you have depression and have been hospitalized, I would love to hear your experiences. Feel free to DM on Facebook.

 

Psychiatry

Oh, psychiatry. I wish I had better things to say about you. I have been involved with you since age 18, over 25 years. I’ve probably had around 10 psychiatrists in my lifetime. Here are a couple of negative situations.

I was going to a community mental health center that also had people prescribing psych meds. She was a physician’s assistant who was off the rails. One day she took a bag of sample medications and literally threw them in my face, all while yelling “We try to help people here!” Apparently, my complaints about the side effects and lack of efficacy of the medication did not please her. Needless to say I never went back and I felt traumatized by the whole encounter. I told her my level of educational attainment and she seemed confused why somebody at that level would be so depressed! Her blithering ignorance was stunning. I didn’t even bring up being transgender because I got a bad vibe from her about accepting LGBTQ people. Upon googling her name, I see she is still a PA and that she is gainfully employed including in behavioral health. This just goes to show how low the bar is for people who work in the mental health care area.

My second story deals with a man that worked at another community mental health center. It is in an old, dilapidated house. As soon as you walk in, there is an admin who says a curt “hi” and then literally asks you for your co-pay. Not “how are you?” or even basic chit-chat. Just down to get the money. Then you wait in the ugly waiting room until he comes out. Basically, this operation is like a psychiatric factory. This particular psychiatrist almost never looked me in the eye. From the time I entered until almost the time I left, he was typing away on his laptop. The appointment was 15 minutes, if that. Apparently he was typing because he didn’t have time to write clinical notes later so he just wrote them during the session. I would not be surprised if he saw 32 clients a day. It was always: how are the meds working? Who are your symptoms? And how are the side effects? Holistic was not in this man’s vocabulary. Then he would print out the scripts and send you on your way. Every time I came out of there I felt worse than when I went in. In fact, it triggered another mental health challenge that I will talk about in a future blog entry. The sad part is that I learned that out of the four or so psychiatrists there he was one of the better ones!

I am currently seeing a psychiatrist that is better than the previous two. I still generally do not look forward to the appointments because it is a fight over the meds, which ones are working, which ones aren’t and which different ones I should try. Like most psychiatrists she is “conservative” about meds but apparently less concerned with efficacy. Psychiatry is like a medication roulette wheel. It is like throwing a strand of spaghetti to the wall and seeing if it sticks. It is the most inexact science within all of medicine. Like therapy, I wish it worked better. Having depression is like living on a cliff and always being afraid that you are going to fall off the edge. Talk therapy and psychiatry are the tools that are available to you and they are incredibly ineffective, at least for me.

I could write a whole entry about people who identify as psychiatric survivors or ex-patients as they had such horrific experiences with psychiatrists. This is, after all, the “science” that came up with such great accomplishments as the lobotomy. Sorry to sound so cynical, but I really feel like I have been put through the ringer as far as psychiatry. I have no easy wrap-up except to say: be brutally honest with your psychiatrist. Let them know what’s going on for you and how and why you are dissatisfied. We need massive changes to our entire mental health care industries and that includes psychiatry. I wish I was more optimistic about change but it seems to come very slowly, if at all.

 

 

Disability

“The ADA defines a person with a disability as a person who has a physical or mental impairment that substantially limits one or more major life activity. This includes people who have a record of such an impairment, even if they do not currently have a disability. It also includes individuals who do not have a disability but are regarded as having a disability. The ADA also makes it unlawful to discriminate against a person based on that person’s association with a person with a disability.”

There are many different types of disability: mobility, sensory, psychiatric, learning, developmental, intellectual, etc. There are also visible and invisible disabilities. In our culture, the basic image of a disability is a wheelchair user. While this is an important part of the disability community, the majority of the disabled community are not wheelchair users. Many have invisible disabilities. 1 in 5 Americans have a disability. This means that just about everyone knows someone with a disability, though they may not know that they know. Being disabled is incredibly stigmatized. Many people are not “out” about their disability. It is understandable why they would not be given the amount of discrimination that people with disabilities are subjected to. Ableism is the name for prejudice, discrimination and oppression directed against people with disabilities. While it is somewhat known, there are mnay people who have never heard the term ableism. This needs to change as we need the language to call attention to systemic discrimination perpetrated against disabled folks.

Ableism is like weightism. It is a form of discrimination that is all too often ignored by even social justice activists. We do not have the attention that is garnered by race, gender or sexuality. This bothers me given the extent of ableism in our society today, not to mention the amount of disabled people in our society – 20%! I am disabled. I have a mobility disability related to rheumatoid arthritis and peripheral diabetic neuropathy and frequent pain in my knees, ankles and feet. I deal with several chronic illnesses, the most difficult one being Type II Diabetes. I have multiple psychiatric disabilities, with depression being the most pronounced among them. These disabilities affect my functioning each and every day. It limits multiple life activities. It impacts my ability to get from place to place in a timely manner. It affects my ability to climb stairs. My depression affects my ability to get out of bed, to function, to go to work, to do my work, etc. Sometimes I don’t know which is worse, but the two often feed off of one another. My blood sugar can greatly affect my mood and I have to test my glucose and take a shot every day of my life.

I feel uneasy “coming out” as disabled. It is so incredibly stigmatized. It says a lot that I feel more comfortable coming out as transgender than I do coming out as disabled. Mental health diagnoses are particularly stigmatized. Discrimination against mentally ill people is known as mentalism or sanism. We so often walk through the world feeling alone with our mental illness and continuously confronted with mentalism and sanism but there are TONS of people who are also dealing with mental health challenges. Sometimes I wish everyone that had an invisible disability could suddenly get a blue dot on their forehead so people could truly get an understanding of how widespread invisible disabilities actually are.

Disability is a fundamental part of the human condition. It is “natural” and “normal” to be a person with a disability. What is unnatural and abnormal is the societal obsession with “perfect” bodies. What is unnatural and abnormal is the fact that not all buildings and programs are accessible to all people. Disabled people are not defective. We did not come out of the womb damaged or become damaged. We have an impairment that limits one or more major life activities. Disability should be seen as part of the diversity tapestry of our culture and it should be celebrated, not denigrated. We need to be defenders of disabled people and learn to fight ableism in all its forms.

Depression [Part I]

This one is really tough for me to write about. I have stated publicly in talks that depression has been the hardest thing I have ever had to deal with in life. Given the myriad of problems I have dealt with, this is really saying something, trust me! I have faced depression since I was around 13 or 14 years old. Originally it was largely caused by the bullying I faced in Elementary School and Junior High School but it continued after the bullying ended. However, the bullying simply switched to discrimination and being a social pariah for being Trans, queer, fat, tall and disabled. The thorny question becomes: is my severe depression due to social circumstances that I live under or due to biological/chemical realities going on in my brain and/or body?

I really don’t know. And it is not for lack of thinking. I have thought about this many times. It is a question that remains elusive and that remains a mystery. I think that it is probably not an either/or, but a both/and. Depression is multi-pronged and has a multi-causality origin. It is incredibly complex, and many years of therapy and psychiatry have me shaking my head because I have yet to figure out this behemoth which has taken up so much space in my life and in my brain. In fact, it should be paying rent for the way it has moved in on me!

Depression is life threatening. I know because it has been life threatening for me multiple times. Even writing this makes me nervous. To admit in a public forum like a blog that you deal with mental health challenges is taboo. We are not supposed to even talk about mental illness, much less admit that we are dealing with it. And yet, SO much of the U.S. population deals with depression, anxiety, bipolar or other mental health diagnoses. It is the pink elephant in the living room. Everyone sees it but nobody talks about it or even wants to admit that it exists.

I think being in a professional job makes the stigma even worse. The powers-that-be may assume that your mental health challenge makes you unable to effectively do your job. Or they may believe that if this is something you experience that you should not talk about it. You should not talk about it with colleagues or with students. I have been very open about my journey with depression and I do wonder how much of a liability that has been for me on the job. Somebody once told me that I had enough strikes against me and that I should not talk about my mental health issues. In fact, my other targeted identities laid the groundwork for me to talk about having depression. I have come out of so many closets. What’s one more?

Depression is an illness and it is physically, mentally, emotionally, psychologically and spiritually painful. I really would not wish it on my worst enemy. It is difficult to deal with when it is chronic. I have been dealing with depression for 30 years. I have had countless years of therapy and psychiatry. I have been hospitalized and been in a partial hospitalization program. I have survived a suicide attempt and frequent passive suicidal ideation and I have literally been on dozens of different psychotropic medications and even thought about ECT. I know that unless there is some miraculous cure, I will have to deal with this life-threatening, chronic condition for the rest of my life. The negative impact this has had in my life is tremendous. I also have great trouble identifying what is the trigger for my depression. I can have times of relative calm and then be hit as if a bomb has detonated. I search and search my mind for what has caused the seismic shift in my mental landscape and come up empty. This is frustrating beyond belief but it shows that a person does not have control over their depression. That is one of the greatest myths, that a person has control over this and can simply pull themselves up by their bootstraps. This is a myth and a very dangerous one at that.

In Part II of my discussion of depression, I will be writing on a challenging question: Is there anything positive about having depression?