Monday, September 27, 2010
I had about six minutes to talk, but we talked four different times as different groups of 8-10 people each rotated through the various workshop rooms. I talked about stigma, the way people who live with mental illnesses are portrayed in the media, the fact that most people with mental illnesses are not criminals or violent, and then I talked about myself and my history a little. I described psychosis, what it entails, and how lucky I was to finally get helped by a medication regimen that worked well enough to get me out of the state I was in five years ago before I was properly diagnosed. A pivotal moment in my life occured when I was taken by police, in handcuffs, to the hospital, and then ordered by a judge to stay hospitalized for six months. That was how I began to get better. For the first time, then, I was on medications that worked and that had the time to begin to take effect, since I was there for so long and the choice of whether to take them, and the complications of how to afford them were taken out of my hands. That's why I'm alive today.
My cohort from the local NAMI consumer council spoke too, and did a great job, and a family member who has been doing these sensitivity trainings for years and who answers the local NAMI hotline with his wife, spoke first during each session, and talked about what NAMI does and the fact that Major Depression, Bipolar Disorder, and Schizophrenia are brain disorders involving chemical imbalances
I felt like I managed my anxiety well enough to speak effectively, which was really good, because I had been quite nervous before. Several of the people thanked me, and told me I had done well. One woman said, "You are AWESOME," which kind of made me laugh, and another one said she was about to cry, after hearing my story, because I reminded her of her daughter; then she asked me for a hug.
A friend of mine, who was my professor for a few writing and literature courses I took back in the 1990's, has suggested that I try public speaking as a job, to actually make money doing it. I scoffed at the thought that anybody would pay little, old me, to hear me talk, but sometimes I wonder - what if I could do that at some point, or even just speak more often as a volunteer. Because I don't see this as speaking just about myself, just to benefit myself. When I do things like what I did today, I do it on behalf of everybody who has ever lived with a mental illness. I try to say what I think we, collectively, want people to know. I speak up for the stigmatized, marginalized, and ignored people like myself all over the world. And I like doing it.
Next month, I'm going to be on a panel of speakers at the Southeast Institute on Homelessness and Supportive Housing 2010 conference. This is exciting, since I've never spoken at something like this before. I am nervous, but as I had expressed to the president of our local NAMI affiliate that I wanted to do more to help homeless people with mental illnesses, he asked if I'd like to take this on, and I said I would. I will be in a workshop with other "consumers" (people who live with mental illneses; weird term though it is). I am looking forward to that. I lived in three different shelters during periods when I was homeless and psychotic, and I lived in a car for a few weeks. I lived in the bedroom of a friend of a friend who didn't really like me all that much for three years (very kind of him to let me do that), with no car, and I barely ever left that room. I know a little bit about what homelessness is like, though I was never in the position that I had to live on the streets. In motels, yes, but not on the street. I was lucky in that respect.
There are a lot of homeless people in my neighborhood, because there's a shelter nearby, and it's the "downtown" area of the city I live in. I often wish there were more programs around to help these people, and it's sad that there aren't. So I'll do what I can, and if I can speak up on their behalf, I feel priveleged to have the opportunity to do so. Wish me luck!
Monday, September 20, 2010
I think this set of videos are a great tool for educating people about these illnesses, so I passed the link along to a number of people I know in an email today. If you have one of these disorders, or want to know more about them, you may also want to check out this well-written article.
It's rare that I come across accurate portrayals of Schizophrenia in the media, so I wanted to share this information with you.
Wednesday, September 15, 2010
Note: This post will be written, not only for regular readers of this blog, but for newcomers to understand some of how this blog came about.
In 1999, I wrote an article called, "Stuck in a House" and posted it on a website I'd made. I got a lot of comments about that article, which discussed the way an invisible illness had affected my life. I was lucky, too, because through the internet, I'd found other young women who had invisible illnesses much like mine, and several of us formed friendships via email - friendships that lasted for years and kept me going during times of unmitigating pain and loneliness, the times when I felt that nobody understood what I was going through. In honor of Invisible Illness Awareness Week, a few days late, I want to talk about what it's like to have a "stillness" as my old friend called it, that affects your life but isn't obvious or understood by most of the people around you.
When I was 20 years old, I became sick. I didn't have any idea what was wrong with me, but I knew it was something serious, because I felt like I was dying. I had a history of depression, so the first thing any doctor I saw thought was that I was just depressed, and psychosomatic. Then I got diagnosed with Fibromyalgia, which, back then, wasn't understood or well-known at all. I began to read about Fibro and the connected Chronic Fatigue Syndrome, realizing that I had all the symptoms of these conditions. I became unable to work at the library where I shelved books, and had difficulty functioning at all due to the severe exhaustion and physical pain I was in all the time. Nobody around me thought I was really sick. I didn't look sick. That is the comment that always, always comes out when a person has an invisible illness: "But, you don't look sick".
Over the years, my diagnosis changed. I went to every kind of medical specialist there is, and had tons and tons of tests. I was poked and prodded and x-rayed and my diagnosis changed and changed again. Right now, it's thought that I most likely have Mixed Connective Tissue Disease along with the Fibro and Sjogren's Syndrome (an autoimmune disease)along with as arthritis of the cervical spine, an impaired immune system, hypothyroidism, a vestibular disorder, peripheral neuropathy, and other things. In the past, I was told I probably had Lupus, Rheumatoid Arthritis, Osteoporosis, and other things.
Ultimately, though, the diagnosis doesn't really matter. At the end of the day, what matters is how I manage my health problems, whether or not I am getting help for them, and that is basically all. I have long since adjusted to my limitations and am no longer depressed about them. I don't focus on my health problems, and I don't feel debilitated even though there are many things I cannot physically do. I've accepted the situation. One thing I'll never do well, though, is explain this to people. So usually, I don't. I'm silent about a huge part of my life, because I don't want to be looked at as a person acting like a victim, or whining or complaining, or in need of pity. I am not sorry for myself, so I don't want pity, and by the same token, I don't need to prove to anyone else that I have an illness that is real even though they cannot see it.
Some years after I became physically sick, something else changed. I became quite severely mentally ill. I had my history of depression and anorexia before, but those issues were mild in comparison to delusions, hallucinations, and what was eventually diagnosed as Schizophrenia and then Schizoaffective Disorder. This is another illness people can't see. I don't look like I'm mentally ill. I don't normally "look" psychotic, even when I am, except for occasions in the past where I was crying or walking around saying strange things to people in public. People who know me well can tell, sometimes, if I'm psychotic or experiencing a lot of symptoms. But, now, usually people who don't know me well really can't tell. I know a lot of people who do know about my illness because I know them through the National Alliance on Mental Illness (NAMI) and my work as an advocate on the local NAMI consumer council. But at my job, I keep the "schizo" part of my life in the realm of the invisible, because I fear the stigma and discrimination that comes with this illness. And I've gotten to meet many people here at this blog, which gives me the wonderful opportunity to spill my guts about the truth of my situation, and not have to hide it to avoid embarrassment or discrimination.
Sometimes I feel like a fraud, or like a very misunderstood person, since so much of my life is comprised of things I don't discuss with anyone at my workplace. I only work part time, but I see these coworkers regularly and I would like to actually get to know them better, rather than have to pretend that I'm fine all the time. I still have symptoms, though they're managed well with medications, which is why I am able to work at all. I go to school, trying to better myself and to work towards a future when, hopefully, I will be able to manage full-time work. I may get to that future, and I may not. But I do the best I can with the cards that have been dealt to me.
One thing that I can say for sure is: I'm no longer stuck in a house. My physical health, though complicated, is much more manageable now than it was when I was young, confused, and lacking information. My mental health is manageable too, which is something I couldn't say a couple years ago. What I want to do now is work to make invisible illnesses, such as Schizoaffective Disorder, more visible: to educate the public, advocate for better services, and help those in need of information for their own mental health. I am doing this through NAMI, and through speaking at the local Crisis Intervention Team Trainings for police officers in my county, and I'll be speaking at a conference on homelessness next month - talking about my past experiences and the connection between homelessness and mental illness.
I've come a long way, but it will take much more work, not only by people like me, but by everybody who cares about humanity, to make the world a more fair, merciful and knowledgeable place when it comes to dealing with invisible illnesses. They are often misdiagnose, not diagnosed at all, or chalked up to personality deficiencies. Invisible illnesses are actually the most common type of disability there is today in the United States, and we need the medical community to be more educated about them. Disabled people face stigma every day, and people whose disabilities are invisible may face even more, as others do not comprehend their situation. I think the idea of an Invisible Illnesses Awareness Week is great, and I hope that this effort served to educate many folks about these types of illnesses.
Monday, September 13, 2010
On Facebook, about 45 comments were written on the comments section of the link to the article, last time I checked earlier today, and 98% of those comments were people talking about how they are on disability, or they know people who are on disability, and they are disgusted with this insulting piece of writing. I want to say something about Social Security Disability benefits in case anyone reading this is not aware.
First, you can't get them unless you have records from doctors showing a definite permanent disability and a doctor who will state that you are permanently disabled. Even if you have that proof, 9 times out of 10, you'll be denied benefits when you apply. The application process is lengthy and more involved than getting a mortgage on a house. After you appeal, you'll often be denied again. Many people get a lawyer who takes on their case, because they don't know how else to fight the system for the methods of basic survival that they severely need. The lawyer, if they win the case, takes some of the back pay of benefits. Even with a lawyer, you may have to further appeal. I know one person who fought the system for five years, with a lawyer, until she finally got the benefits. And, incidentally, I think "benefits" when referring to this system makes it sound more like something being given to people for nothing, which is not what it is at all.
Once you're on SSDI (Social Security Disability Benefits), you really get to live in the lap of luxury. You get an income usually below $800 a month (a number based on the dozens of people I've known on disability). Mine is below $700 a month and it used to be much less.
This is so fun! You get to live far below the poverty line and everyone knows how much enjoyment a person can get from that! Also, you usually can't work at all, so you get to lose your feeling of fulfillment in life and your status as a member of the working class. This brings dicrimination by people who think you're worthless if you don't have a job, which is always fun to deal with! Yay! When someone asks you what you "do" for a living, you don't usually want to say "I am on disability", considering the ignorance of the general population regarding disability and considering there plethora of lovely articles like the one I'm describing in the media.
Also, in order to EVER get SSDI benefits, a person has to have worked and paid into the system, and the amount of benefits you get is based on how much you worked. I got sick at age 20. I didn't get to work much to pay into the system. But because the amount of my check is so low that it won't pay for my rent and food, much less all my other bills, I have no choice but to work. And I want to work. But I cannot work full time. I work part time and that is how I survive - SSDI and my part time job.
I don't talk to a lot of people about being on SSDI, because people who know nothing about it are apt to think what James Ledbetter things. All of us on disability are "milking" the system. In case you haven't followed this blog for a long time, I should mention a few things here. Before I applied for disability benefits, I had been sick and in so many emergency rooms and doctors offices that I had piled up thousands of dollars in medical bills that I could not pay. When I was without insurance and couldn't see a doctor for my physical illnesses or my psychiatric state (which was not yet correctly diagnosed), my life was a nightmare. Before I applied for disability benefits, I was homeless, living in a homeless shelter for several months and my car for a few weeks. I then went to live with a friend of a friend, and only at that point, after being debilitated by sickness, drowning in poverty, and having my life turn into a nightmare, only THEN did I even apply for disability benefits.
I applied, and I got the thousands of pages of medical records sent to Social Security, and I got the medical exam done by the SSA doctor, and I filled out all those forms, and I won. I did not have to appeal. But at least once, every 2-3 years, I have to reapply basically, updating all of my information and proving that I am still deserving of my $700 a month. Since I have to work part time, but can't work full time due to all my symptoms, I have to be careful that I don't make too much money at my part time job, because if you make over $900 a month, you get kicked off the SSDI program and lose your "benefits" (the money you need to survive) as well as Medicare, which provides the medical care THAT YOU NEED to be able to work part time.
If I was to try to go off disability right now, that would mean that I would have to find a full time job that I'm mentally and physically capable of doing, and that would pay me enough to be able to survive, and that would provide immediate health insurance from day 1, which would not exclude me for any pre-existing conditions whatsoever. That's not going to happen any time soon.
If Social Security determines for any reason that you are no longer eligible for "benefits", because you worked or because you don't seem sick enough anymore, you lose the benefits. And then, if you're disabled and can't work, it's too bad for you.
The Social Security Disability program didn't even EXIST until a few decades ago, and it is a wonder that a person with a disability could financially survive before this program existed. One way that they did so, if they had a psychiatric disability, was to live in a state hospital. In the 1980's when Ronald Reagan's administration closed many of those state hospitals (the deinstitutionalization period), many of those people became homeless, had no where to turn, and needed disability benefits. Which is what explains one of the claims made in Ledbetter's article - that more people are on disability now than ever before, for mental health reasons.
Ledbetter further claims that "everyone will have a mental illness at some point in their lives", which is obviously not true. Everyone may have mental or emotional crises such as situational depression in their lives, but the majority of people in this country do not suffer from a mental illness. Many do, but not most, and certainly not all. Only about 2% of us have Schizophrenia in any of its forms. So to diminish the severity of mental illnesses by claiming they are as common as a common cold is insulting and ridiculous.
I urge you to read this article for yourself. You can come to your own conclusions. If, like me, you find it outlandish, you may wish to write to the author, or to Slate.com, to tell them so. Or leave a message below the article, as many people have already.
Those of us who have a mental illness, or who care about a person who has such an illness, really do need to speak out, and speak out loudly when we hear such ignorance and misinformation as the claims in this article. We all know we don't want that tiny disability amount each month to go on a vacation to Tahiti and eat Bon Bon's and drink champagne. We need that money to SURVIVE.
And when someone says that people should not have what they need to survive from a government into which they have paid taxes, well that is a pretty dangerous thing to say. It makes me think of the Nazi regime, and how Adolf Hitler had many people with disability exterminated from the earth because they were thought to be worthless. We are not worthless, and we are not a bunch of welfare queens. We are people who need help to get by because of illnesses which are totally out of our control, illnesses we didn't ask for and we don't want to have. I wish that James Ledbetter could walk in my shoes for a few days.
A lot has been going on with my family lately. There is a lot of stress involved. I have this problem: I take on the world's problems and worry about them incessantly. I have done this my entire life. I was the first child and the first grandchild in my family. They say I always told the younger kids what to do. Once when I was four years old, someone hollered down the basement of a relative's home and said, "Is anyone down there watching the kids?". I said, "I am!! Don't worry!". And so it began.
People don't want my help all the time, or my advice. But some people do tell me a lot about their problems, and I feel that I need to try to help somehow. It is, in certain occasions, totally useless to do this. In other situations, I do help people in a tangible way. But it's the thought process that is a problem. It is the amount of time I spend focusing on other people's problems that is dysfunctional. I've been getting sick to my stomach for months worrying about a particular person; my anxiety has been through the roof. I can't stop worrying, and the worrying eats away at me, makes me miserable, distracts me from the things I need to do to live my own life, and doesn't change the other person's situation very much in the long run anyway.
One of the things I like about Al-Anon is the idea that you detach with love. That you can't cure someone's drinking problem (or other problems), and you didn't cause the problem, and that's just how it is. There are a lot of books out there about codependency, and I have looked through some of them, and found that I am described there quite well. I'm not totally codependent, but I have the signs of it. I feel that my family's well-being is my responsibility, deep-down, and the thing is, my family is never doing well. My family is always caught up in financial problems, mental health problems, drinking problems, life management problems, anger problems, etc. It seems sometimes, that they are never just, plain happy. And neither am I. I'm content sometimes, but I don't feel much happiness - or, at least not for very long. If this stress was removed from my life, if I didn't constantly take on the woes of the world, then perhaps there would be space in my life for true happiness.
I feel very lost right now. It occurs to me that I've written a sentence like that a thousand times here, which is not a good indicator of how I manage my life.
I am not sure what to do about the college degree I am going to get. I don't really want the one I am planning on getting. The only real reason I am going for that degree is convenience (and money is the other reason). I would prefer to study women's studies, which I have loved to study for much of my life, or become a social worker. But the logistics of doing that just aren't working out. I feel that I have become accustomed to a certain degree of stasis in my life, and now, unlike my younger years, I'm afraid to move. I used to move all the time, but that was then. That was before my life revolved around managing my mental illness. If I could just be FREE again, just for a while, I could do so much that I want to do. But I have to worry about not being able to find an affordable place to live near a university and not being able to handle the coursework and a job at the same time, and not being able to do what I want to do.
This is very frustrating. I feel like I am never going to have the fulfillment I long for in life. I feel like I will never write for publication, even though that is something I've always longed to do (and have done once). I would love to write about handling Schizoaffective Disorder (or Schizophrenia in general) for a publication. I would love to speak publicly about it more often. I would love a job where I was able to advocate for women and/or people with mental illnesses for a living. I don't know what kind of degree would get me that kind of job, but I'm afraid the bachelor's in public policy and administration might not be it. And that's the degree I'm planning on going for.
I don't know what to do with myself.
Wednesday, September 01, 2010
I'd be interested in hearing your thoughts on this video. One part that I have to say I did not totally agree with is the footage of Dr. E. Fuller Torrey. I understand that a lot of people have been offended by his words and that he supports forcing medication on people, but since I have recommended his book, Surviving Schizophrenia, and have agreed with some of his viewpoints, I felt I should mention that I don't personally consider him a dangerous, stigmatizing person. I could be wrong, of course. This video footage definitely made me think twice about Fuller and the kinds of statements he makes, since I have obviously not seen all the footage of him that exists. I really didn't like his using the term "brain damaged" to describe people with mental illnesses.
I definitely love this video and agree with the points it makes. I think it would make an excellent educational tool, and the creator offers to use it as such for schools or other institutions in a note on the website right below the video. I wish more people would speak out about stigma and make videos like this one!
Linked to that website, I found another excellent site, which is a sort of clearinghouse on stigmatizing media. It's called the Anti-Stigma Home Page, and I recommend checking it out as well.