STIGMA

The concerns and difficulties that face people with mental illness, their friends, and family are more than enough for anyone to deal with. They are not, unfortunately, the only problems that demand your attention. There are issues related to external and practical matters such as dealing with financial matters and looking for suitable housing or work. It is very important to plan in advance what to say to friends, relatives, neighbours, and co-workers about your relative’s illness and the problems it raises in your life. In all of these arenas you will frequently encounter the ignorance and prejudice that surround mental illness and the stigma associated with it. This leaflet offers suggestions for dealing with some of these problems.

TALKING TO OUTSIDERS

Prejudice about mental illness is based on a lack of accurate information or firsthand experience. Consequently, the best way to respond to outsiders you encounter is by speaking out knowledgeably. The attached guide, “Fighting Stigma and Fostering Acceptance”, summarises the information that can help you correct most of the misperceptions you will encounter in the general public.

It is unfortunate that in addition to everything else with which you have to contend, you also have to educate people about mental illness. On the one hand, you already have so much stress in your life that you have little energy left over for this task. On the other hand, your firsthand experience puts you in the position of being able to speak with authority and compassion. Those who care about you are likely to pay attention to what you say because they are concerned about the needs of your family.

You may find it useful to prepare several ways of describing your situation. You can then choose the way that best suits your mood and the situation. When you are with close friends or relatives, you might give more detailed explanations of what has happened to your ill relative and the impact it has had on you and the rest of your family. You may want to share the diagnosis, prognosis, and any information you have learned about mental illnesses, as well as the confusion, heartache, and sadness that you have experienced.

With people you do not know very well, or with neighbours, you may want to give a very short version. They may need to know only that your son/daughter is suffering from a biological illness that sometimes affects the way he/she behaves. You can assure them that he/she is not dangerous and tell them that they ought to just say hello if they see him/her outside, even if he/she appears to be talking to himself/herself.

Think also about such situations as what to tell colleagues who may answer the phone when your ill relative calls. You need not say more than that he/she is ill, in crisis at times, and that you would like to talk to him whenever he calls. When you run into former friends of yours or of your ill relative, remember that you can give as much as little information as you like. You can say your relative has been having a hard time but you do not feel like talking about the situation. Or you can go into detail, discussing the diagnosis and a summary of his/her history. The only rule is to do whatever works best for you and which is not harmful or hurtful to your relative.

People will usually follow your lead regarding how much to discuss the situation. Do not expect your friends to ask how your ill son is doing if you never bring up the subject yourself. It is wise to assume that most people who care about you want to be sensitive to you and to your family, but it is also wise to assume that most people do not have a clue as to how to do so. People with a relative who has a mental illness often feel hurt by friends who feel awkward about the situation and with the best of intentions, say or do the wrong thing.

Educating your friends, colleagues, and relatives puts yet another burden on you, but this is one we strongly encourage you to embrace, at least for a few important people in your life. Otherwise you will find yourself in the all-too-common position of feeling further isolated and resentful of friends and relatives. Deciding you cannot talk to anyone about one of the most significant parts of your life is bound to take its toll. Most of your friends and relatives need to hear no more than a few of the basic facts. If they want to learn more, offer to get them some information on the topic

Telling people how they can be supportive of you is also important. You need to spell out whether you want your friends and relatives to ask you about the situation. If it is not helpful to you for people to offer advice, you must tell them so. Let them know whether their efforts to cheer you up feel good.

It is also important to keep in mind the limitations on how much you can change relatives, friends, and the general public. Often family members who become active in fighting for the rights of people with mental illness want everyone in their family to do the same. It is essential that each family member respects the ways in which other family members are currently dealing with the situation. Never forget that no matter how much a relative tries to distance himself or herself from a relative with a mental illness, he/she cannot escape the impact entirely. Everyone has to go through his or her own journey of coming to terms with an ill relative. The path and pace will differ significantly from one person to another.