I was on one particular medicine when it was brand new and had hardly been tested. This medicine made me effectively well, so my doctor was reluctant to take me off of it even when I gained weight, my triglycerides skyrocketed to ten times the upper limit of normal, and I developed diabetes. One thing this illustrates is, with schizophrenia, schizoaffective disorder, and I think too bipolar disorder, how very difficult it is to find just the right medicine that leaves you without symptoms. (That can be true for depression, too. It's hard to find just the right medicine.) When you have found the right medicine -- a process that can sadly take years -- often it is better to really have to diet hard and exercise rather than to discontinue the medicine because of weight gain and related side effects. You sometimes have to stop taking a medicine due to side effects though, as I did with Clozaril. I took it when it was new, for eight years. Now it is only approved legally to be used for a maximum of four years. Guess I was the guinea pig! But would I rather it had not been available? I enjoyed eight years symptom free, and for the mentally ill, this is a Godsend.
Now that I am back on the same old medication I was on when I was successful in graduate school and am again without symptoms, I am so very pleased. It is sometimes quite difficult to find just the right medicine that works just right for you. And you have to make it all about YOU. Don't let your psychiatrist settle for a medicine that "sort of" works. For that matter, don't settle for just any psychiatrist. If you can't get your psychiatrist to keep experimenting until you are on something that works, get a new psychiatrist. Even, so, you are experiencing what can be a devastating illness and you have to be patient. You have to keep working with your psychiatrist. I have had the same wonderful psychiatrist for 28 years now.... and feel very lucky and blessed to have known him. We grew old together!
The next thing to realize is that, if the medicine makes you feel better and more able to have a normal life, that does not mean you have found the best medication to be the best you can be. Perhaps you were used to having serious problems in your thinking and are just grateful to have found something that works sort of or somewhat. Don't be satisfied. My experience with psychiatrists is that if you are getting along OK on your medicine, they don't want to fool around with the mix. Generally, they are the professional, and you need to defer to their superior experience and judgment. But still, ask yourself, was I doing better than this before I became mentally ill? Why don't I feel mostly that good today?
I have been on medicines that made me do fairly well, yet when I prodded my psychiatrist to put me back on the medicine that I was on twenty or thirty years ago, when I was doing well in graduate school, he was reluctant. But I convinced him, and now I am essentially without symptoms other than the side effects of the medicine. You should settle for nothing less than a normally functioning mind, peace of mind in your life, and a renewed chance for happiness. Anything else is just settling for continuing to be functionally mentally ill and having a life you won't be happy with. It doesn't have to be that way. Push your doctor, and if he won't cooperate, get a new doctor.
In other words, realize that mental illness is a disease, like any other disease. (And it's not your fault, either.) You are probably always going to be mentally ill. The realization of that can be a bitter pill to swallow. In my case, I wanted so badly to NOT be mentally ill and be a more productive and happy member of society, that I foolishly stopped taking my medicine once. I can tell you, that is always a disastrous decision, and in my case, it cost me one hell of a lot of grief and heartache, and for my father and friends, too. Don't do it. Work with your mental health professionals until you are on a medication or mix of medications that makes you feel well. You should settle for nothing less. You are always going to be mentally ill -- it is a disease. But you DON'T have to be functionally mentally ill. You can find the right medicine, and learn the self-monitoring techniques, and be honest with yourself and your professional about symptoms: and you CAN BE functionally NOT mentally ill.
The key word here is functionally. You will still be mentally ill, and you MUST continue taking your medicine, even if you haven't found just the right mix yet. If you are not working well with your psychiatrist, get one you can work with better. Don't settle for just getting by. This is my heartfelt advice for all people who have mental illness. Don't settle for just getting by. But be patient. It can take years to get better. You're just going to have to accept that, because that's a fact. The main thing you must realize is that you too are a valuable person, and you have the same inherent worth and dignity that any successful and happy person has, so you shouldn't settle for anything but success and happiness. I will say that these diseases can be terribly debilitating, and in finding the right treatment, you need to be doggedly determined and never give up.
I know how easy it is to get discouraged by mental illness, but the first step is to know in your heart that you are just as good as any other person, and that none of this is your fault. These are organic diseases, and no one should feel any guiltier, or less valuable, than if you have bad arthritis. It's not your fault! Although I am just one person and not a professional in the field, I do have thirty years experience at being mentally ill, and I have overcome my disease largely. So I would be happy to talk with anyone who would like me to try to give them a little advice. Sometimes just knowing somebody cares can make a big difference.
In the News:
As economy takes toll, mental health budgets shrink As economy takes toll, mental health budgets shrink, Stateline.org, July 19, 2010, by Christine Vestal, used with permission, quoted verbatim:
Mental health
policies in America have changed radically over the past 60 years. A one-time
emphasis on caring for patients in large institutions has shifted to treating
them in outpatient settings in the community. The ways mental disorders are
diagnosed and categorized have changed. And the use of psychotropic medications
is more prevalent than it used to be. But
throughout the decades, one thing has remained the same. States have taken the
lead role in publicly funded care for the mentally ill, and paid the majority
of the expenses. Even through recessions, the states have steadily increased
their mental health budgets every year to meet increasing demand. Now, as
states face their biggest fiscal challenge in modern history, the trend has
reversed. For the first time in more than three decades, mental health funding
is declining. The drop-off is translating into a reduction in the number of
psychiatric hospital beds, as well as fewer services for mental health
emergencies and longer waiting lists for housing for the chronically mentally
ill. The cuts are coming just as some experts say economic pressures are
creating an increase in mental illness. Although no national numbers are
available, hospital emergency rooms, juvenile courts, child welfare agencies,
local jails and homeless shelters are reporting bulges in the number of
mentally ill people who end up on their doorsteps after failing to get help
elsewhere. In addition, a recent national survey
showed that the weak economy is taking a toll on the mental health of
Americans, with unemployed people four times as likely as those with jobs to
report symptoms of severe mental illness. "States are chipping away at
their already very fragile mental health system," says Michael
Fitzpatrick, executive director of National
Alliance on Mental Illness, (NAMI) which advocates for improved
mental health care. "More people will be unable to find even basic
services that allow them to stay out of the hospital or involvement with
police. It's a dire situation that we've never seen before."
Funding fluctuations Since the 1950s, when states cared for more than 500,000
people in psychiatric hospitals, state mental health programs have included
more and more community-based services. Those include a wide array of services,
such as suicide prevention and 24-hour crisis centers, treatment for drug and
alcohol abuse, housing and work supports, counseling and violence-prevention
programs. Although advocates maintain that only half of those in need are
receiving public mental health services, states have made progress by serving
more people in the community at about half the price of committing them to institutions
-- and with better outcomes. Today, only 50,000 people reside in state mental
hospitals while millions are served on an outpatient basis. Still, states have
had to increase their budgets to keep pace with demand. Despite fluctuations in
funding for nearly every other social service, state mental health budgets have
increased nationally by about 6 percent per year for the past 30 years. Now,
for the first time, states are pulling back mental health spending. These
unprecedented cuts -- nearly 4 percent as a national average between 2008 and
2009 -- come at a time when other public agencies such as child welfare, law
enforcement and housing also are experiencing budget cuts and can ill afford to
handle the overflow. According to the National
Association of State Mental Health Program Directors, 2010 spending
appears to have fallen nearly 5 percent compared to 2009. Early indications are
that 2011 mental health budgets may sink by 8 percent or more.
Exacerbating the
mental health budget crisis is uncertainty over whether Congress will decide to
extend an increase in the federal match for Medicaid services under the
stimulus program, which a majority of states have counted on to stretch their
overall health care budgets. In 2008, states spent $36 billion on mental health
services to care for 6.4 million people, about half the number of people
advocates say are in need of care. Of the total, about $17 billion came from
Medicaid, the federal-state health care program for the poor, $500 million came
from federal grants and the balance was funded through state general revenues.
Not counted in the total is funding from county and local budgets, much of
which also sits on the chopping block.
Where the cuts are:
Although a few states have minimized mental health cuts and
targeted less essential services, many states are closing psychiatric
hospitals, eliminating 24-hour crisis centers and tightening eligibility for
subsidized medications and services that affect thousands of adults and
children with severe mental illness. Here are some examples of states that have
made big cuts: To fill a $1 billion hole in its 2011 budget, Arizona slashed
this year's budget for mental health services by $36 million -- a 37 percent
cut. As a result, advocates say 3,800 people who do not qualify for Medicaid
are at risk of losing services such as counseling and employment preparation.
In addition, more than 12,000 adults and 2,000 children will no longer receive
the name-brand medications they take to keep their illnesses in check. Other
services such as supportive housing and transportation to doctor's appointments
also will be eliminated. Arizona has been considered a progressive state
because it provides the vast majority of mental health services through
cost-effective outpatient community programs.
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