I've received some emails recently, from people who have read this blog, asking me for input and suggestions one what to do about their own battle with Schizophrenia or their family member's dealings with it. From time to time, over the past few years that I've been writing here, I have been asked questions, or, sometimes, told that things I've written were helpful to those readers who were new to this illness and sometimes had little hope. If I can inspire anyone to have hope, that is perhaps the greatest gift I could create with this blog. So, I thought I'd write some tips and pointers, for the uninitiated, and even for those who, like me, have been dealing with this illness for a very long time, but may have lost heart and are not sure what to do to cope.
When a person is first diagnosed, some tips:
When you are diagnosed with Schizoaffective Disorder or Schizophrenia, your entire life changes. This is the first step towards recovering reality for yourself. This is a step toward positive change. It may not feel that way at the time to you - or your family or friends - but it is the beginning of a new life. Diagnosis is the key to getting adequate treatment. You can't get better if you don't know what you're dealing with.
One of the first things I did when I was diagnosed was to look to books for answers. I was still psychotic, and in a hospital, at the time, so I couldn't really read much. But someone gave me the book, Surviving Schizophrenia, by E. Fuller Torrey, an expert on the disease, and it helped me immensely to come to grips with the actuality of my situation, over time. I couldn't read it all at once. I looked it, in bits and pieces, for a long time. Eventually I could read most of it. It's a long book, but it's a great resource, both for a person who has any form of Schizophrenia, including Schizoaffective Disorder, and for anyone who cares about that person and is involved in her/his life. Torrey's opinions are sometimes controversial. People who don't agree with him believe he advocates the violation of individuals' civil rights by stating that sometimes people need to be forced into treatment. I don't always agree with Torrey, myself, either. But, personally, forced treatment was what saved my life, and I think it is, on some occassions, necessary.
Dealing with this illness is very complicated. The illness is complicated and it complicates people's lives a great deal. It cannot be successfully managed with medication alone, in my experience. Medication is crucial, for most people with this illness, but there are other things that one needs to do to survive besides taking her pills.
You will need to develop a toolbox of coping mechanisms.
Here are some things I do that help:
When hearing voices (auditory hallucinations), listening to music can be extremely helpful. Many people with this problem use portable cd players, radios, MP3 players, etc. with ear phones to drown out the voices. It can work quite well. On one hospital ward, people with psychosis were allowed to keep their portable music playerrs on them, while it was against the rules for everyone else. The doctor knew that these specific patients needed that aid and allowed them to have it. My car stereo and my music at home are vitally important to my life, not only when I'm psychotic, but all the time. Music can be soothing, inspirational, motivating, etc...Music helps people with many things. I advise people with this illness to get some music and use it. It doesn't really matter what kind of music it is. You might like folk music, or you might like punk rock. Use what you like.
Note this blog. I've been writing it for five years, almost six. It has helped me tremendously. You, too, can join the blogosphere if you like. It's free, simple, and useful for yourself and those who read your blog. You might prefer a private journal, instead. Whatever form you use to write, writing can be a great release and a tool to help you document and thereby, understand better, what exactly you are dealing with. Later, after you have fewer symptoms, it can be useful to have documentation of the time period when you were more symptomatic, so that you understand why you need treatment and don't decide that you never really needed it in the first place.
-Other Creative Work:Creative writing, all forms of artwork, creating music, designing websites, crafts, sewing, etc...all forms of creative work can be useful in coping with mental illness, because a creative outlet gives you a venue where your emotions can be heard, and also because it can help you become more focused, calm, and at peace with your life. I've known a lot of people who have a mental illness and are extremely creative, as you probably have too. It's no secret that many of the world's best artists and writers are or were people who have undergone mental health damage. Personally, I'm not an artist at all, but I learned how to do decoupage once in an art group at a hospital, and I still do it sometimes today when I feel the urge. I can make some nifty little gifts for people, and I enjoy it, artist or not. You might want to try a couple of different types of creative outlets until you find something you like to do. Let loose and find your muse!
Therapy:A competent therapist who practices Cognitive Behavioral Therapy, or some other type of psychotherapy which works for you, can be extremely beneficial, and indeed, necessary, when dealing with a serious mental illness like Schizophrenia. Pills do the work to bring you back to reality, but another person can help you stay there and learn to cope with all the hurdles you will come across in your journey to a healthier mind. It's also great to be able to trust someone who cannot and will not be disclosing anything you tell her to the world, and who has experience in helping other people with the same problems you are having yourself. You are not alone with this illness. About 1-2% of the population is diagnosed with Schizophrenia. Many are also undiagnosed, yet suffering. A therapist can be a lifeline for you.
More Help:I have a case manager, who I've had assigned to me via a community mental health center for a few years now, and she has helped with various things. She keeps in touch with me every so often, and I like having her as a resource to go to when I need to deal with financial issues, Social Security, my landlord, etc. I also had help through a vocational rehabilitation program when I waas looking for a job. Vocational Rehabilitation is offered through the government in most states in the U.S., as are community mental health centers. Some people also need help with housing. I have been there too. If you're homeless, obviously, your first priority is to get help putting a roof over your head. There are homeless shelters, subsidized housing, housing owned by community mental health centers, public housing, and other places where you can live at a rate you can afford. You just need to find the resources for your local area. A case manager is a great person to ask for help with that. She/he can advocate for you when you're unable to be a great advocate for yourself. You will, in most cases, need to go through a hospital stay before you get a case manager, but not necessarily in all cases.
If you're disabled by your illness, you will need to, in most cases, apply for Social Security disability benefits. This may require help from a lawyer, if you get denied and have to appeal. Legal aide agencies will help after you've gotten to the point where you have a hearing, but case managers can help you deal with Social Security as well, and guide you through the process. A case manager is a great resource to have. They are generally overbooked with too many clients, working for little pay, and may not have much time to spend with you, but they can be very helpful anyway.
There's also a ton of information on the internet now about basically everything, so you can always look up info on finding housing and applying for Social Security; you can apply online now.
I've lived in homeless shelters twice, an ALF once, a group home for ten months, etc...so if you have questions about housing, feel free to ask me, and I'll let you know if I can help.
My point here is, don't be afraid to ask for help. There are people who work in social services because they really, truly like helping others. Nobody becomes a social worker for the money; the money is awful. And sometimes people in helping professions are burnt out and not useful. But many of these people are gems who will greatly enrich your ability to cope and function in the world.
Having supportive people in your life is important for anybody, but especially when you have a serious mental illness. Sometimes family members can be like friends, but many people don't have that special connection from an understanding family member. As this illness, by nature, makes people have difficulty interacting with the world around them, and often leads to solitude, you will have to make a purposeful choice to find friends for yourself. Sometimes you might find them in support groups for people with mental illnesses or addictions or other problems. You might go to some sort of church or school. You might meet people online. There are ways to make friends, and you don't have to be a big social butterfly to find one or two close comrades whom you can confide in. True friends will be there for your in good times and not-so-good times, and have listening ears. You also need to realize that you, yourself, have the ability to be a good friend to another person. You're not from a different species. You're human. Your mental illness need not define you. You can be a smart, friendly, positive person who will be liked by other people. Which brings me to the next thing....
Learning to Like Yourself:This is hard. I personally suck at it. I don't blame you if you think the entire concept of liking yourself is lame and pointeless. But, really, at the end of the day, you are the person who you can always rely on to get yourself through things. And you need to know that you have the capabilities to survive, thrive, etc....You need to notice that there are many aspects to your personality, and, as mentioned above, you are not just a walking DSM IV book. You are more than a person with a mental illness. Firstly, you are a person who has many positive attributes. Try to remember this. If it helps you, you might want to write positive affirmations for yourself and post them in places where you will see them every day.
Argue with the Voices: If you are aware that you have paranoid, or psychotic thoughts, delusions, etc, or hear voices that aren't there, or see things that are not really there, then you are in a position to battle with these perceptual problems. You need to say to yourself, "Why is it that everybody else with Schizophrenia also thinks they're being followed by the CIA and not just me, myself? Maybe because of the illness being the real reason for the thoughts." And things like that. I can't write enough about this in a paragraph, but it's important that you strive to know what is real at all times, and when you don't, find someone to talk to about your thoughts who can help you sort them out. ]
Take Your Medication as Prescribed:
Don't forget to take your medication. Medications can save your life. They saved mine. I believe in following sound, scientific advice, which says that treatment that works best for Schizophrenia is antipsychotic medications. For Schizoaffective Disorder, if you're like me, you will also need antidepressants and/or mood stabilizers. You might also need medication for anxiety or obsessive thoughts, as these problems frequently coexist with psychosis. Do not forget to take them. Do not give up on the possibility that they will work with you unless you've already been on them for months and seen no improvement. Do not give up becuase of the side effects; there are drugs with fewer side effects, and if there aren't, sometimes the side effects are not nearly as bad as being psychotic is, so you will need to live with the damn side effects (like gaining 100 lbs as I did). That's just how it is.
Well, this is getting to be a book-length post, so I think I'll stop now. If any of this information helps you, I'm glad. If it didn't, I'm sorry, but I'm not the only resource you can easily locate online; there are a few million more that might serve you. I'd appreciate any comments you'd like to leave and if you have more ideas on how to cope with this illness, please post them. Thanks!