My name is withheld since I am a woman who suffers from bipolar disorder. Maintaining anonymity is essential for me to function in our community and maintain my right to confidentiality. I am responding to Ms. O'Malley's editorial. Sorry, it's long and I need to go to bed. You may find it of interest.
I can understand the pain that families and people with mental illness go through. I know first hand what it's like to go through psychotic episodes, taking many different medications, choosing to be off medications, being admitted nearly every year to a lock up psychiatric ward, going through months of outpatient programs, and finding a good psychiatrist and a good counselor, which is nearly impossible in the Bay Area, since most of them have a full patient load already or they don't take your insurance. I've even been off my medications a few times early on in my illness, because I thought I didn't need them anymore, but now I know taking myself off medications not only hurt me physically but was a mistake. Most psychiatric medications need to be weaned down to avoid physical and mental harm and side effects.
It was 2 years before I was diagnosed correctly as having bipolar disorder instead of major depression, and even when my psychiatrist told me he believed I had bipolar disorder because of certain behaviors that were witnessed, I screamed at him that he was dead wrong and he would be better off re-reading the DSM. He treated me as bipolar anyway, we didn't talk about it until years afterwards, when I felt comfortable enough to ask him if he thought I was still bipolar. I was lucky I had a wise psychiatrist, who didn't challenge me. He also knew I wasn't stupid. I knew what the drug combinations was for, but I just went on thinking I had major depression because I was comfortable being depressed.
When I did ask him, he told me to read up on bipolar 2 disorder, which I did, and was shocked to find that every single symptom I had was named. It took a few more years to have it really sink in, but I was able to attach bipolar disorder to myself a few weeks after he told me to read up on it.
I would just have a couple of months when I would be okay, even while on medications. During those moments, I took it upon myself to advocate myself, fight for decent treatment in the hospital facilities, with the insurances both government (Medicare) and private, and fight my own thoughts that I didn't need medication after I got better. It required having good and reasonable friends to reality check my thoughts, a strong will, complete trust in a psychiatrist who I didn't know personally but who was considerate and never gave up hope even when I did, and the reinforcement that I mattered to many people. I also had to avoid some people who were so sure I should get off my medications and just drink mangosteen juice 3 times a day to be cured.
It took over 13 years for me to finally get to the point where I felt like I am nearly a well person. I had to stop working, which wasn't my choice, but my psychiatrist wouldn't let me go back to work. My colleagues were very supportive, but they also agreed that I was losing my battle by still being on the job. By the time I stopped working, I was considered to have medically resistant bipolar disorder, with only a 10% chance of being fully functioning for the rest of my life. Even then, my life would most likely be shortened by suicide, since my bipolar disorder has a high suicide rate. Even after those statements, my doctor did not give up but he asked for help, and I saw a bipolar expert.
The bipolar expert recommended a "last ditch" medication. I took it 4 months ago. The side effects are terrible. Blood work monitoring and psychiatric office visits were weekly. I had to go even when I couldn't find the strength to stand up early in the morning. The medication is dispense weekly by the pharmacy because it was based on the blood lab results. I stuck the course. I didn't care whether I lived or whether I died when I started and when I felt bad. I forced myself to do the basic things I needed to do. Now, the effect is miraculous. I feel nearly well. I don't have much stamina, but I can see myself working again one day,and being off Social Security and Medicare.
My private insurance that is secondary to Medicare advocated me to give me the medical financial help to get the treatment I needed. It was one benefits/claims supervisor who came to my rescue after a major breakdown that I had in a doctor's office years ago after dealing with a very rude receptionist. It She still bats for me, and she has climbed the ladder but still takes my calls, although she assigns an effective analyst to assist me in my favor. It is more cost effective for the insurance company for me to be well and get medical treatment. I learned it was worth it to complain and pursue relentlessly as long as you had a solution and concrete reasons why it needs to be done.
Regarding Medicare, you have to jump through hoops just to try to get mental health care. Don't even bother trying to get a psychologist or get information on how or what psychiatric care is available to you. I got a list of 10 psychologists and half didn't even bother returning my call and the other half told me they weren't accepting any Medicare patients. Also, mental illness is the only condition where they have a 190 days hospitalization limitation for a LIFETIME. They have an unbelievable automated phone cycle that last forever, and when you do get someone, they just read you what it says in the brochure that you have in front of you. Apparently, they are an outside answering company. Even Social Security told me not to bother calling Medicare, and yet Social Security requires me to be on Medicare.You can't even complain to Medicare about Medicare. They don't have anyone for you to make a complaint. The only people you can complain to are the politicians, and you know how long Congress takes to make a decision or a change.
By the way,for those who believe in physically forcing a person to take medication against their will: The only way you can do that is to coerce, restrain or sedate or both, place a nasogastric tube down their nose to go to their stomach, then crush the medication and force it in with an irrigation syringe and flush with water, then take the tube out. That's assault. It is not allowed for people with physical illnesses, and it shouldn't be allowed for mentally ill people. The only time it's done against someone's will is when they commit suicide, are in an ER and semi-conscious, or they are not conscious enough to speak for themselves and have no written advance directive or a durable power of attorney. The only other time conscious mentally ill people are forced to take medication is when they need to be mentally competent to stand trial.
Mentally ill people should have a choice on what kind of treatment or medication we get just like physically ill people. We have to live with the side effects and we have to administer the medications ourselves. It may not be possible for us to go through a certain kind of treatment, because of what we value in our lives. We may not even be able to afford the treatment. Having our rights, our independence and the ability to choose are inherent to being treated as a human being, and it makes us feel safe. The Patient's Bill of Rights is not just a placard that hangs on a hospital wall. It was written because abuses were done in the past. Ill people are not in the position to have power without those rights.
We know what mental pain is, we go through torture all the time, we've seen how it nearly destroys our families we lose our friends, and many times, we lose our credibility just by being mentally ill. I cannot tell you how many times I would say something and I would be discredited just because I have the bipolar diagnosis by health care workers, some friends and strangers. I've even had people talk to me like I only have a quarter of my brain left when they found out I was bipolar.
Some of us are lucky to have friends and families who stick with us no matter how bad it gets. Most of us don't. There is no difference in the pain that a family or a person goes through when the person decides not to go for treatment for a physical or mental illness.
I do agree that the mental health support system is losing ground financially or even by treatment. Psychiatrists, psychologists and other mental health professional are woefully underpaid by mental health insurance companies compared to health care professionals who deal with physical illness. Our outpatient programs are drastically cut. It is usually the first to get cut in the health care system. I think you know full well that when there isn't much out there, we will self medicate with alcohol or other drugs, which presents another set of problems for society.
It's the most prevalent illness in the United States and yet there are people who do not believe that mental illness even exist. I have a feeling whoever recommended the mental health benefits for Medicare are some of those people. I know city health care systems in this country that do not cover suicide because it's a self inflicted injury, and disability insurances that only cover it for 2 years, instead of decades as with physical illnesses, because they consider it based on "self reported symptoms." It's amazing that people think with so much disregard for an illness that causes so much pain and suffering for the sufferer and the people around them. The irony is that even when a small number of mentally ill people kill someone or many people, there is usually an uproar, but then, it will blow over and nothing will be done to improve the system, and it will happen again and again. People just make judgments, get angry, do absolutely nothing to be effective and forget.