Frequently Asked Questions from Brothers and Sisters of People with Schizophrenia

The following are questions commonly posted on our discussion boards, along with answers and advice from responding members. In many cases, member answers have been expanded on from other sources, and relevant links have been added for more information. These answers are meant only as a helpful guide and a resource for further information; each individual situation is unique and may need a tailored solution. Your loved one's treating psychiatrist is always a good person to ask when you have specific questions pertaining to your own case.

If you don't find what you're looking for here, please visit the Schizophrenia Brother/Sister Discussion Board (see the righthand menu column on the homepage ) and post your question. Our members are usually very generous with their advice and support. See also the General FAQs for extensive information on diagnosis, treatment, medication compliance, coping strategies, and practical matters for living with schizophrenia.

Index of Questions:

How a severe mental illness in the family commonly affects brothers and sisters
What are my chances of developing a mental illness also?
How do I explain this illness to other people?
How to cope as a brother/sister and as a family
What you, as a sibling, can and can't do for yourself and your ill brother/sister
Your role in your sibling's recovery process
Is it helpful to try and make my brother/sister get out and get more involved with life?
How can I best help my sibling if I live far away?
How to plan for the future as parents age

How a severe mental illness in the family commonly affects brothers and sisters:

When a brother or sister is diagnosed with a mental health disorder it feels almost like a personal attack. My brother was diagnosed with SZ 12 years ago. I've always dealt with a combination of emotions since... guilt(that it was him and not me, an inability to help or make him/her better), anger (that God could let this happen to such a terrific person), embarrassment (what do I tell people when they ask questions), more anger (at myself for being selfish enough to feel embarrassed), fear of an unknown disease and a scary future, and GRIEF ( for losing my brother who was one of my best friends).

The above citation are the feelings of one member. It is clear from these words that brothers and sisters are profoundly affected in very specific ways by a diagnosis of schizophrenia in a sibling. Not only do you feel the loss of a beloved sibling - a long-time friend, ally, and supporter - but potentially of the support and attention of both parents as well, as they are consumed with the illness of their child. This can cause "certain enduring legacies" (When Madness Comes Home, Victoria Secunda, p. 82) for the well sibling. Some of these very common reactions and emotions can include:

--Confusion about the way your sibling acts
--Embarrassment or shame about being in your siblings company, or having to explain their illness to your friends
--Jealousy of parent's attention to your ill brother or sister
--Anger that such a calamity could happen to a person like your brother/sister through no fault of their own
--Frustration at your parents, doctors, or the mental health care system at being brushed aside or not included in recovery/treatment plans.
--Resentment at not having a "normal" family, and having to deal with this burden for the rest of your life
--Grief over the loss of a sibling that you knew and loved, and the loss of a normal childhood
--Pressure to be the "perfect son or daughter," to not cause any trouble and succeed at everything
--Fear: of maybe becoming sick yourself, of eventually having to care for your ill sibling, of starting a family of your own someday

In addition to these emotions, you might have some very specific concerns about how the illness will affect continue to affect you, your own future, and that of your family. In Troubled Journey by Diane T. Marsh and Rex M. Dickens, the following personal concerns (related to the family experience) were cited most frequently by the offspring and siblings of mentally ill patients:

1) Concern about caregiving for their loved one
2) Family disruption
3) Difficulting balancing personal and family needs
4) Sense that their own needs had not been met
5) Feelings of helplessness/hopelessness
6) Poor self-esteem
7) Guilt Feelings
8) Psychic numbing
9) Problems trusting/problems with intimacy
10) Sense of growing up too fast

Knowing that you have legitimite and specific needs that deserve to be addressed is an important step in the healing process. Many siblings deny their own emotions, or feel guilty burdening others with their own problems, since they are the "well sibling." However, it's important for your own health and well-being, and that of your ill brother or sister, that you acknowledge your own needs and find the support that is available to you. You will be better able to care for your brother or sister by avoiding caregiver "burn-out", and ultimately you will be healthier and happier yourself.

Continue reading to find resources to help, or visit our support groups page and contact a local chapter near you. Family members on have heralded support groups as absolutely essential outlets for their stress and emotions, as well as fonts of knowledge, and advice for coping from others with similar experiences.

What are my chances of developing a mental illness also?

This is a very common concern from anyone who has a family member with a severe illness. As far as current scientific understanding goes, the symptoms of schizophrenia seem to be the result of multiple genetic and environmental factors. Within the general population, an individual has a 1% chance of developing schizophrenia. For siblings of people diagnosed with schizophrenia, the risk increases to about 9%. (see a heredity chart on schizophrenia). Be aware that even if you inherit a genetic predisposition, this does not necessarily mean you will develop schizophrenia or any other psychiatric disorder. According to Troubled Journey, relatives tend to significantly overestimate their own personal risk for becoming sick.

There are many things a person can do to decrease their own risk of developing schizophrenia or other mental illnesses. Knowing yourself and your own body, and doing everything you can to keep yourself mentally healthy and happy, is one of the best defenses against becoming sick yourself. See Causes and Prevention on the website for proven risk factors of schizophrenia (biological and environmental), and how you can decrease your own risk.

How do I explain this illness to other people?

It's natural to be hesitant, scared, or shy to disclose such personal information about your family. It's also natural to feel embarrassment or shame about the way your sibling acts, especially in public. But many family members on have pointed out that not discussing such a huge factor in your life with others will eventually eat you up inside. Find people, friends or professionals, who can understand and sympathize. There are many people out there that can and will support you in this struggle.

The General FAQ section has more specific suggestions about talking to others about your relative's illness.

How to cope as a brother/sister and as a family:

One brother posted on the discussion boards: "This disease is the toughest issue your family will probably face in your life." It's important to hang together and tackle this illness as a family - you will accomplish much more for yourselves and your ill family member by drawing on each other's strengths and resources.

In her book Troubled Journey, Diane Marsh lists some factors that help and hinder families in the coping process:

Potential strengths/resources that help families cope (pp. 35-36)

  • persistence of family bonds
  • family pride in your accomplishments together, and those of your ill loved one
  • continued growth of the family as a unit, and each individual member, even in the face of challenges
  • good mental and physical health among your family members
  • adequate financial/educational resources
  • a strong support system, inside and outside the family
  • spiritual resources that give meaning and coherence to life

Factors that prevent a family from effectively coping (pp. 30-32)

  • denial of the mental illness by family members
  • family disruption and stress that deplete your energy and resources
  • maladaptive coping strategies (such as substance abuse)
  • family disintegration under the stress of the illness

The following are further coping suggestions from brothers and sisters on the webpage:

1. Borrow or buy the book "Surviving Schizophrenia" by Dr. E. Fuller Torrey, and have everyone in the house read it. See other recommended reading materials, and learn as much as you can about schizophrenia and its effects on patients and loved ones. See also the success stories of people with schizophrenia who are living out full, enjoyable lives.

2. See the coping strategies of other families on the website - read the available online articles, and read/post on the discussion boards for family members.. Especially see Dr. Ken Alexander's 14 Tips for Coping with Mental Illness.

2. Check under Support Groups on the home page and see if there is a local NAMI office in your area of the country. See if they have offer a family course on schizophrenia and other brain diseases - their "Family to Family" course (free 12-week training course for family members and caretakers of people with severe mental illness) is highly recommended by many members. Another support resource is 'The Sibling Support Project' - "the only national effort dedicated to the interests of over six million brothers and sisters of people with special health, mental health, and developmental needs." They have programs in all fifty states and in some countries overseas. The workshops are geared mainly towards children ages 8-13, but some are modified to be helpful to older/younger children as well.

3. Don't forget your own health - living with schizophrenia is mentally and physically exhausting not only for the patient, but for family members and loved ones as well. Remember that it's your role to be a loving and supportive sibling, not a doctor or a miracle-worker. Don't neglect your own life or friends - having other outlets will keep you from feeling overwhelmed, bogged down, or trapped by your sibling's illness. It's important to go outside and remember that the world still turns, and not just around schizophrenia.

What you, as a sibling, can and can't do for yourself and your ill brother/sister

Remembering these points may help you feel more in control, and less overwhelmed by your brother or sister's illness.

You CAN:
--Talk honestly about your feelings
--Ask questions about things you don't understand, either of your parents or the doctors.
--Be active in improving mental health services near your home or in the community, maybe through local mental health advocacy groups
--Avoid making the ill person the center of the family around whom everyone else revolves
--Keep focused on your own life, enjoyment, and goals

You CAN'T:
--Be completely responsible for the welfare of your sibling, or cure the mental illness.
--Make your sibling behave or do certain things - like take their medication
--Solve all their problems, or feel that you should
--Make the impact of the illness go away by ignoring it.
--Neglect yourself or your own wants and needs for the sake of your sibling or the rest of the family

Your role in your sibling's recovery process

Family members play integral roles in the recovery, rehabilitation, and overall lives of schizophrenia patients. Although medications are essential for controlling symptoms, the support and understanding of family is just as necessary and absolutely irreplaceable. Dr. E. Fuller Torrey writes in his book "Surviving Schizophrenia": "People with schizophrenia do best in situations where people are calm and communicate clearly and directly" (p. 304). He suggests that families can help create this essential atmosphere by taking the SAFE attitude towards the illness - that is, Sense of humor, Acceptance of the illness, Family balance, and Expectations which are realistic (p. 284).

Family members are often untapped resources of inside information concerning treatment and rehabilitation. As a sibling, you know the person behind the illness - who that person was, who they are now, and what treatments and actions bring out the best and worst in them. You also are a witness to what is and isn't being done as far as treatment, therapy, and support, and aware of the ramifications of those actions. This insider's role makes you a valuable contributor to plans for your sibling's welfare. Read as much as you can about the illness (see recommended books), talk with others on the discussion boards of, and talk with your sibling's treating psychiatrist and/or your parents to better understand your place in your sibling's treatment and recovery process.

Victoria Secunda cautions in her book "When Madness Comes Home" that siblings sometimes experience a change in their roles in response to their brother or sister's illness (pp. 134-136). These roles can be assigned unconciously by parents, or taken on by the sibling themselves. The three main role categories include:

  • Custodian - a sibling trying to step into a parental role. Although parents may appreciate the extra help, and the sibling might feel an empowering sense of authority, they can burnout with overwork, or feel resentment at being forced to grow up too fast.
  • Bystander - often goes to the middle sibling. Tend to be more emotionally detached, and act as invisible observers, diplomats, or moral overseers. These siblings often suffer from parental neglect, and feel very isolated and alone.
  • Adversary - the outspoken, "troublemaking" family member that acts out their frustration and anger. These siblings may end up in the unpopular role of "family scapegoat."

In actuailty, your role does not have to change so drastically - you are still a brother or sister who loves your sibling, watches out for them, is there for them, listens to them…just as you were before. One sibling put it this way:

It's important just to be someone that your sibling can talk to and confide in. Start slow - and probe more about how he/she is feeling as time goes on - if she seems like your questions, or if comments may be causing stress - then back off (stress is a very bad thing for people with schizophrenia - it causes relapses). Talk frequently, even just about day-to-day things, stuff that you are up to that might be interesting to your sibling - try to keep the communication paths open. People with schizophrenia frequently withdraw and stop communicating - but you can help by being there and making it easier when your sib feels up to talking.

However, it is much more difficult and draining for you and your family now to continue in your "normal" roles, because as a mentally ill person your sibling needs lots more care, attention, and understanding than they did before. The illness can also make them behave like someone you don't recognize and maybe don't like very much, not the same person you remember as your brother or sister. It is often frustrating and ungratifying to try and help someone who may not be able to acknowledge their illness, and may even make you or other family members the target of hallucinations, delusions, paranoia, or anger. Finding a support group or a therapist for yourself, to take care of your own needs and to have an emotional support outlet of your own, is extremely important.

See the following links for information pertaining particularly to siblings of people with mental illness:

Coping Tips for Siblings and Adult Children of Persons with Mental Illness (from NAMI)
Family Reference Manual about Schizophrenia (online pdf file, 150 pages). By the Schizophrenia Society of Canada.
Mental illness - information for family and friends
Siblings - Forgotten Family Members (by Diane T. Marsh, author of "Troubled Journey").

Is it helpful to try and make my brother/sister get out and get more involved with life?

Apathy, lack of motivation, or extreme social withdrawal all fall under the "negative symptoms" category of schizophrenia (see general FAQ - dealing with symptoms for more information on this). Although many people believe that these sorts of behaviors are due to medication side effects or a lack of will on the part of the patient, most often (according to Dr. E. Fuller Torrey - "Surviving Schizophrenia") they are simply another symptom of the disorder. The current generation of antipsychotic medications are much better at treating the positive (psychotic) symptoms, but have not made major headway against the more cognitive/behavioral negative symptoms.

Many family members wonder if they should actively encourage and/or pressure the ill family member to get back into things that they previously enjoyed. They are understandably concerned that their loved one rarely leaves the house, doesn't socialize with anyone, and maybe spends the majority of the day staring at the TV or laying in bed. (Note: excessive apathy (i.e. sleeping all day), might be a medication side effect that is compounding a normal symptom of the disorder. Talk to the psychiatrist about side effects of meds, lowering dosage or changing medications if appropriate).

When we think about the fact that schizophrenia severely disorders the way an affected individual senses and perceives the world (often causing them to experience things in confusing or nightmarish ways) it's easier to see why that person might stridently avoid any sort of stimulation, even just going out to a mall or riding on a bus. One member said the following about social stimulation:

I read that schizophrenics hear a LOT of background noise, and being in a mall or something just as busy is information overload for them. You might think about how it would feel to sit in the stereo department of any electronics store and to have all the stereos booming out with different radio stations and music. If this happened everywhere you went you'd want to stay home in a quiet room as well.

I also read that schizophrenics don't necessarily want to partake in social situations. They'd rather just sit in the same room but not participate in any of the conversation. We think we're doing them a favour by involving them in the conversation but really we're making it harder for them. They like to socialize too but to them just sitting there quietly is enough.

One of the best ways to help is to actively pay attention to your sibling's responses. If they respond positively to your overtures or your attempts at conversation, by all means continue. If you feel rejected or rebuffed, remember that it is most likely a protective mechanism against too much sensory overload, stop and try again later. With medication and therapy, the sensory overload that your sibling experiences may fade to a manageable level, and at that point they may try to ease back into more social activities. Or they may not; the important thing is not to pressure or criticize them, but to find supportive ways to help that acknowledge and allow for the challenges that their illness presents.

Establishing small routines can be very helpful, and a good source of shared time for both of you. Consider a walk together around the block before dinner, watering the plants, sorting the mail, or other simple activities/chores that you can do together as a daily ritual. See what's appropriate based on you and your sibling's abilities and interests, and keep the task simple and enjoyable for both of you. A word of caution - don't have high expectations that your sibling may outwardly enjoy these activities at first. With a little luck and persistance, enjoyment may come later in the game. Keep stressing that you appreciate and want their company, acknowledge their accomplishments of small tasks, and be free with compliments and encouragement.

See Schizophrenia: Symptoms and Management at Home for an excellent description of negative symptoms such as apathy and social withdrawal, and constructive ways for you and your sibling to cope.

How can I best help my sibling if I live far away?

Do your best to keep up communication by phone, and schedule visits as often as you can or feel comfortable. Siblings are important in each other's lives, mental illness or no.

If you are the primary caretaker, and are concerned about your sibling's ability to live independently, try some of the following suggestions:

--hire a part-time home aid to check in every day at a certain time to visit, make sure meds are taken, help out with things around the house, errands, etc.
--appoint a lawyer or another conservator to handle finances, make sure bills are paid.
--share the responsibility among brothers and sisters, aunts/uncles, other relatives. Everyone pitching in makes a big difference
--look for resources in your sibling's area. See the Mental Health Services Locator for a state-by-state directory of mental health community resources.

How to plan for the future as parents age:

How to provide care and security for an ill family member as parents and partners age is a question that every family has to decide together based on individual situations and available resources. Regardless of whether you are prepared (mentally, physically, or financially) to become a primary caretaker for your ill sibling, feelings of obligation and/or pressure from parents can cause guilt and resentment.

"When Madness Comes Home" by Victoria Secunda has an excellent section on "Passing the Torch - who will take responsibility" (pp. 256-274). This might serve as an introduction to talking about emotional and practical issues with your family.

However you decide to divide up the responsibility of caregiving, the General FAQ section has more info on how to plan for finances, a living situation, and long-term treatment for someone with schizophrenia.



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