A Baffled Look

The straight dope on mental health

Month: June, 2013

I live out where the busses don’t run.

I understand why people diagnosed with a mental illness turn to antipsychiatry groups. No one likes to admit they may have a chronic, stigmatized condition and many of them were probably misdiagnosed. I have bipolar disorder and when I was a teenager I was diagnosed with major depressive disorder and attention deficit hyperactivity disorder. I was prescribed medications that are contraindicated for bipolar disorder, namely an antidepressant and a stimulant. It put me in a raging manic state so when I turned 18 I was also given an additional diagnosis of borderline personality disorder and given an antipsychotic called Haldol. I felt horrible so I quit seeing the psychiatrist as soon as I could and joined a 1980s antipsychiatry group called Phoenix Rising. I began drinking daily. About ten years later I started going to a nonprofit called Response that served survivors of sexual assault. They advised me to get sober. I did. About seven years later I developed extreme paranoia and became incoherent. I went to a hospital for an evaluation on my therapist’s advice. In the hospital I was diagnosed with a mixed episode of bipolar disorder (a mixed episode means both depression and mania are present at the same time). I felt so much better I decided to continue taking medication and my life improved dramatically. I have a very supportive psychiatrist and therapist, but I’m lucky; I have good insurance. A lot of people don’t and wind up getting substandard care.
There’s a big problem with poor people not getting the help they need because the local community mental health providers’ budgets are stretched so thin that people can’t go as often as they need to in order to get an accurate diagnosis and the right medication.
I understand why someone would want to avoid psychiatrists given psychiatry’s egregious history and the fact that some providers in psych wards are abusive. Believe me, I’ve learned the hard way which area hospitals to avoid when I have a bad episode. People who lament the lack of state hospital beds are not considering the terrible warehousing and abuse that occurred at state hospitals before deinstitutionalization. But is it really any better today? Is jail worse than the snake pit asylums of the 1940s? Maybe it would be better in state hospitals these days because of advances in psychiatric treatment, but given the lack of funds for mental health treatment in my state I’m not optimistic.
It also can be very frustrating trying to find a medication that works best. I can see how someone would give up. And the medications aren’t perfect. I’ve been feeling mildly depressed for the past few weeks, and frankly, I’m worried about it.
I’m also against forcing people to take medication unless they’re a danger to themselves or others and that usually happens when someone becomes an inpatient in a hospital. I understand why the parents of severely mentally ill adults would want their children to be forced to take medication. Many people with psychotic disorders have no idea that they’re ill and can end up homeless. But after the experiences I’ve had with some medications – particularly when I was misdiagnosed – makes me very reluctant to advocate for forced treatment.
My biggest beef with the antipsychiatry movement is that they want to eliminate the institution of psychiatry, which deprives me of my choice to seek treatment. If you don’t want treatment, fine, but don’t try to prevent me from getting help. Some of them also state that if someone breaks the law they should be jailed whether the offender is incapable of knowing right from wrong or not (source). MindFreedom International’s website advises trying unproven herbal remedies as an alternative to psychotropic medications. There are no standards in the alternative medicine industry so how is that any safer than taking psychotropic medications? I know some side effects of psychotropic medications are terrible, but isn’t it safer to talk to a doctor about it? Back in the 1980s when I wanted to get off psychiatric medications I sought help from my general practitioner.
I also don’t agree w/ the view that mental illness is a social construct. There’s this view that there’s no “proof” that psychiatric conditions exist. Brain science is in its infancy and it’s silly to think that the brain can’t be diseased like other organs in the body.
Each side seems to think this issue is black and white. It isn’t. I’ve lived it.

Affordable Treatment

It’s hard to separate advice on how to cope from political realities such as lack of access to affordable treatment.
According to an Orlando Sentinel article, my county mental health provider no longer treats people without insurance because of budget cuts. There is a clinic run by the local chapter of Mental Health America that treats people without insurance, but these people have to have another health condition like diabetes and even then the clinic can only treat 200 people. There’s a long waiting list. The current austerity measures will only make things worse.
Drug companies are making things worse for the uninsured. The uninsured have to pay higher costs because they don’t have an insurance company or the state to negotiate lower prices for them. I could go on and on about the drug companies, but that’s for another post.
That said, at least you can get free medicine through drug company patient assistance programs. It really helped me stay sane when I was getting my BA, but I still had to pay the doctor. You can get free samples from your doctor too. There are a few psychiatrists in my community who don’t take insurance and have a sliding scale for payment. They’re few and far between, but it’s worth looking into. Call your local NAMI chapter or your local Mental Health America to find one.
State & federal politicians are too busy cutting taxes that fund mental health treatment and the insurance companies lobby against better treatment because it costs them more. So, if there’s less money to fund community mental providers then we need more efficiency for the funds provided for treatment, right? Community mental health providers, however, have been so underfunded that they’re stretched to the max. Peer support groups help some, but it’s no substitute for getting professional help.
There are some possibilities to get free treatment for uninsured people. Back when I was in college I was hospitalized and had a huge bill. I looked into getting the bill forgiven. I asked the billing department for an application. The woman I talked to referred me to her manager because she knew nothing about it. The manager sent me a form. I filled it out, sent it in & my bill was forgiven. So if you have a huge hospital bill and you’re indigent, appeal to the hospital billing department & speak to a manager.
Another option for free or low cost hospital or health care facilities is Hill Burton facilities. Back in 1946 congress passed a law giving funds to health facilities and in return these facilities had to offer free or low cost treatment. When you go there, go to the business office and ask for an Individual Notice. This will tell you about income requirements and where to go next. Ask for a Hill Burton form and be sure to bring pay stubs or some other kind of proof of income. If you are asked to apply for Medicaid or Medicare, do so. Ask for a Determination of Eligibility and how long it will be to be notified whether you qualify or not.
I wish I could offer more advice, but I can’t think of anything else right now.

Sweat Dreams

They served ravioli again with green beans and white bread at the drop-in center where I run an art workshop. The meals there are nutritionally complete and the ravioli smelled enticing. It was so slow that day that I didn’t see anyone on the shower sign in sheet when I signed in. Maybe I looked at the wrong list because usually the list is full. Maybe most of the homeless members needed sleep that day more than a shower.
Dee, a woman who came to the drop-in center when I worked there 7 years ago, greeted me warmly. Dee has long grey hair that almost reaches her buttocks. I wondered if she had a hair brush because it looked tangled.
“Jody. You were manager here a long time ago. What happened to you?”
I was surprised she remembered my name.
“I left to go back to school,” I told her.
“College?”
“Graduate school.”
“What’d you major in?”
“Social work, but I left half-way through. It was just too much for me so I dropped out.”
“I went out west while you were gone. Orlando is the best place to be if you’re on the street. My husband and I used to sleep at a 24 hour MacDonald’s over on John Young [Parkway] but it’s better to sleep here. I get about five hours. While we were out west we were in a shelter with a bunch of sick people and my husband got pneumonia. He already has COPD. So we came back after he got out of the hospital.”
“At least it’s warm in Florida,” I said
“Yeah, but Orlando is better than Tampa because of this place. They don’t have a place like here. I sleep here during the day and drink coffee at night at MacDonald’s. Coffee’s cheap there. Not like Denny’s.”
“I know,” I said, “I usually order water when I go there.”
“Yeah. It’s like 2 bucks. That’s too much.” She wondered off towards the pool table. I wondered why she wasn’t sleeping. I wanted to ask her where her husband was, but I was afraid to. Something bad might have happened to him and I didn’t want to upset her. She only had a small black purse with her. I surmised her husband was still with her and was sleeping with their possessions in the TV room, where a lot of the homeless members crash. The TV room is cool and dark and the whole room has couches to sleep on while the TV drones at a low volume. But other members go in and out of the TV room to use the bathroom because the other bathroom has a shower that many members use to attend to personal hygiene.
Most people need about 8 or 9 hours of sleep a night. Sleeping only 5 hours a day, during the day while your circadian rhythm is telling you to stay awake must take a terrible toll on Dee and her husband’s mental and physical health. I have bipolar disorder and if I get less than 5 hours of sleep at night three nights in a row I become manic and when I become manic I lose even more sleep and end up getting sleep deprivation psychosis. I have a house and I get to sleep at night, not during the day like Dee and the other homeless people at the drop-in center who sleep in the TV room after they eat. It makes their mental health and behavioral problems much, much worse. They’re not sleeping at night outside, in shelters or in assisted living facilities because it’s too dangerous and it’s noisy. Section 8 housing has a long waiting list.
I found a YouTube video detailing the lack of sleep among the homeless. Even homeless people who don’t have a mental illness experience grave physical and mental consequences from lack of sufficient sleep. They may experience sleep deprivation psychosis. The homeless people in this video also stated they on average get only five hours of sleep and sleep during the day because it’s too dangerous to sleep at night.
According to a House the Homeless article interrogators of war captives’ use sleep deprivation as a form of torture. Rats deprived of sleep end up dying much sooner than rats that get sleep. Many studies have confirmed that the homeless – especially homeless mentally ill people – have a much lower life span.
A letter by a former homeless person to the editor to the National Economic and Social Rights Initiative details why homeless people hate shelters and would rather live on the street. Many members of the drop-in center have told me the same thing over the years. It’s noisy and dangerous.
Dee is absolutely right; the drop-in center is a safe haven even if members can only get about 5 hours of sleep. At least they can rest without having to be hypervigilant about being arrested, robbed or assaulted.

Circle of Friends

I searched Google about how to run an effective peer to peer self-help group like Alcoholics Anonymous and the bipolar disorder support group I attend. The AA meetings I attend regularly and my weekly bipolar support group are very different from one another and both are effective for me for different reasons so I guess my Google search wasn’t necessary. It all depends on what problem I’m dealing with.
Both are run democratically, with no one in charge, but AA has a specific program of suggestions to follow on how to recover from alcoholism. My bipolar group is much less regimented; we share how well we’re doing and about problems we’re facing that week. I usually facilitate my bipolar group, but I’m definitely not the leader; we don’t have one. In my AA group a different person runs the meeting each time we meet, but usually the person who opens the meetings and makes the coffee picks someone to “chair” that night’s group. In my experience, there’s definitely an informal pecking order in AA. The persons who have many years of continuous abstinence from alcohol are usually considered to know the most about how to recover, though in my experience that’s not always true. In my bipolar group we don’t assume that those who have been diagnosed the longest are coping better. You can’t abstain from bipolar disorder. I’ve been seeing shrinks for over 30 years and, while overall I’m considered high functioning, I still struggle at times.
In my AA group we pick a subject and discuss how it relates to our experiences in recovery from alcohol addiction. There’s a rule about “no cross talk” which means that each person shares without questions or comments from other members. We leave that for after the meeting ends. In my bipolar group, we are free to ask questions or make comments while someone is sharing, but we raise our hands and the facilitator calls on the persons who raise their hands one at a time. For both AA and my bipolar group, the time before the group starts and after the group ends are important for getting to know each other, making friends and getting individual support. Confidentiality is enforced for both groups. It’s important for building trust.
My AA group tithes in order to pay rent for using the room as a meeting space. The church where my bipolar group meets lets us use the room for free so we don’t ask for donations unless we need to pay for things like business cards and a brochure to promote our group.
My AA group runs an hour and usually there are over twenty people attending. My bipolar group is much smaller than the AA meeting I go to yet my bipolar group meets for an hour and a half. My bipolar group is more intimate, so I’ve made more friends there after attending only two years. I’ve been going to AA for almost twenty years and have fewer friends from there because AA groups are usually much larger and have a high turn-over of attendees. There are regulars at the meeting I’ve been attending for fifteen years and I’m close with most of them, but I don’t meet with them outside of the meeting except with my AA sponsor (a sponsor is someone who mentors you and your sobriety) . Recently I switched to a smaller, women’s only meeting and I’m hoping I can become closer to the women who attend that meeting.
AA has a textbook of suggestions and stories that members refer to often during meetings. My bipolar group is a loose assortment of individuals and we don’t have a text to refer to. I get different things out each of my peer run support groups. With AA, I follow a specific plan of recovery and many of the attendees follow this plan too. That way I can go to an AA meeting anywhere around the world and share a common core of suggestions on how to recover and continue to stay sober. My bipolar group is a single entity. We are a group of friends who meet rather informally every week. I can’t go to another bipolar group and expect it to have the same format or content that my current group offers.
I think the most important elements of both of my support groups are that they both provide acceptance and understanding. They have empathy for me and everyone else at the meeting because they’ve been through something very similar. You can’t beat that. Not for the money, anyway.