No, Sis, the President Isn't Reading Your E-mail

When my sister is very sick, she thinks that a ray of light is descending from the heavens, piercing her brain and stealing her thoughts.

She believes that a major corporation wants to destroy her because of things that happened when she worked there 30 years ago.

The president of the United States is reading her e-mails; the Kennedy's want her to marry the least attractive make in the family; our mother has threatened to take her money; and she could be kidnapped due to her distant relation to someone very successful in the business world. Adding to her woes is that she needs to get married and have a child right away or two very important royal lines will be disrupted forever.

At her worst, she won't leave her apartment, certain that "the people" will kidnap, beat, and ultimately kill her. The voices in her head come in like multiple radio stations on the same frequency, mocking and ridiculing her, making accusations.

My sister is one of 57.7 million adults in the United States who suffers from mental illness, the most common cause of disability for persons ages 15-44, according to the National Institute of Mental Health. What constitutes a mental illness varies by time and place, but one definition is that it's a disorder causing a person to suffer, to engage in self-destructive behaviors, to have disturbed work patterns and relationships, and to be a danger to self or others. My sister's illness is schizophrenia, which affects 1.1% of Americans and is one of the most severe and disabling of all mental illnesses, NIMH reports.

What is schizophrenia? It's not insanity - that's a legal term with no meaning in the fields of psychiatry or psychology. And it's not split personality, as commonly believed. Schizophrenia is a psychotic disorder that typically involves hallucinations - such as sights and sounds not apparent to anyone but the sufferer - and delusions, which are false, firmly held beliefs.

There are several varieties of schizophrenia, some with bizarre symptoms such as speaking in a jumble known as "word salads," the sensation that one's personality has disintegrated, and being frozen in odd physical positions. My sister's kind is the paranoid variety. Paranoid schizophrenia may be the most disturbing of all mental illnesses with its connection to physical violence.

No one knows what causes schizophrenia. It strikes in adolescence or early adulthood, just when its victims need to start making their way in the world. There is no cure. It's often said that schizophrenia is an illness of thirds: one third get better, one third get worse, and one third stay about the same. The most effective treatment to date is with medications so powerful that they dim the voices and beliefs, but that also have side effects that can be difficult to tolerate.

Medication helps my sister, but it's very hard for people to help her. When her illness is at its worst, she distrusts even the most gentle and benign of people, ascribing to them dark and twisted motivations for wanting to hurt her. She can be arrogant, condescending, and cold. The few people in this world she allows to know her, aside from medical professionals, are her family - and sometimes she's mad at us, certain she's been the victim of our cruel and outrageous behavior.

At these times it's easy to feel disgusted and alarmed by the things she says; much more difficult to find the person underneath the illness, whose love and helplessness flash briefly as she tries not to drown.

Not only is she resistant to accepting our help when she is very sick, but it can be hard to keep wanting to offer it because she breaks our hearts, wears us out. Every member of our family has been hurt to the core by her and frightened half out of our own minds by her sometimes violent behavior. Birthday, holidays, just hanging around the house were risky propositions as I was growing up and continue to be today, if she is decompensating - such as when she decides to reduce her medication.

Even when my sister is feeling well and her sweet nature returns, she has cost us so much that we may step cautiously around her, never knowing how or when she will strike. Some who have been most directly on the receiving end of her symptoms have had to cut off all contact with her, just to survive. But whether we are in touch with her or not, we all struggle because we love her.

What can you do to help someone with paranoid schizophrenia, without also drowning in its dark waters? These are some of the things that I've learned over the years:

* Keep it light. In conversation, try to focus on day to day events, no matter how trivial. Your loved one's "job" is to stay afloat, and routine and details of daily life are important. Take an interest and share some of your own routine. Bringing up controversial topics either in the news or from your personal lives may only trigger arguments.

* Be affirming. You don't have to agree with your loved one, but you can be empathetic and understanding. Simple statements like, "I understand," "I see," or "you have a right to your feelings" - and just plain listening - can help your family member or friend feel heard.

* Keep in mind that lowered intelligence is not a part of mental illness. Your loved one may be very intelligent and talented and should not be treated like a child. Look for the things in the person that are right, not the things that are wrong.

* Don't argue with delusions. It's a waste of time and energy, and it may make things worse. On the other hand, don't encourage them, either. When my sister asked me if I thought George Bush could be reading her e-mail, I answered, "No, I don't," and went on to make a joke about why I felt that way (we both ended up laughing).

If she's really scared about one of her delusions, I have found it helps to say, "I'm so sorry to hear that" and then to urge her to focus on taking care of herself, as her health comes first. This usually brings her around. If she's in crisis and thinks she's in danger, I might say, "That must be very scary for you. What do you need right now to feel safe? What can I do to help? What has helped before?"

* Urge your loved one to contact his/her doctor when necessary. I don't say that I think she's getting sicker, just that current events sound stressful and since she's dealing with an illness, she deserves the support of her doctor.

* Take seriously all threats of physical harm, either against self or someone else. Call the police right away and let them handle it. If you can, inform the person against whom the threat was made.

* Remind yourself that your loved one is still a person; his/her behavior makes sense given the thoughts and sensations she or he is experiencing. Don't blame him or her for the illness. It's not a choice or moral failing. Your loved one would gladly pull him/herself up by the bootstraps if it was possible.

* Do not tolerate abuse. If your loved one is being hurtful, either emotionally or physically, let him or her know that you cannot be around that behavior and that you hope he or she is feeling better soon. End the contact without arguing or explaining further. Setting healthy boundaries is even unselfish, because you can't help your loved one without taking care of yourself first. I have blocked my sister's e-mails, and family members who lived near her have actually moved to create physical distance - an extreme tactic, but in their case, necessary due to their own serious health problems.

* Educate yourself. Know what your loved one's illness entails and what treatment options exist. Knowledge is sometimes the only power you have.

* If your name is on a release of information at your loved one's doctor's office, stay in touch to discuss symptoms, medication issues, etc. The more a doctor knows, the better he or she can help. Your friend or family member may be very clever about hiding things from the doctor and not disclosing difficulties.

* Have a support system. Whether it's other family members, friends, or support groups, make sure there are people you can vent to and who will understand what is happening with your loved one. It's a very tough walk to take alone. You need people who will help you, just as you help your loved one.

We have a long ways to go in really understanding mental illnesses such as schizophrenia. With causes unknown and cures still out of reach, the suffering of those touched by it can be great. If you love someone with schizophrenia, do what you can to keep supporting that person. Then get both of you big medals for bravery. You deserve it.