How to Start a Support Group—Or Find the One That's Right for You

There are many difficult situations in which the support of others can be invaluable. This includes illness, lack of self-acceptance, grief, problems in relationships, as well as problems at work. In these cases, attention will come in handy not only from loved ones, but also from strangers who find themselves in a similar situation. There are support groups for such purposes (here are just a few examples: groups that bring together widows , doctors , loved ones of transgender people , relatives of LGBTQ people and  parents who have lost children ). 

Give yourself the right to worry about your illness

Various illnesses (your own and those of loved ones) can affect mental well-being, and support can be very necessary. But in some cases, sick people begin to blame themselves and are ashamed to seek help. Doctors urge you not to succumb to feelings of guilt, because they only cause harm. It is better to admit to yourself that this particular situation may complicate your morale.

And if it’s not you who is sick, but you feel bad, there’s nothing to be ashamed of either: you give a lot of strength to your loved one, and if it’s harder for him than for you, this doesn’t mean that you don’t need help. For example, it has been found that families and friends of patients with mental illness face despair, loneliness and emotional burnout.

The sooner you notice changes in yourself, the easier it will be to cope.

Decide if support groups are the right way for you to get help

How is a support group different from group therapy?

Group therapy  is a type of psychotherapy in which a specialist can work with several clients at once with a similar problem. During meetings, a psychologist or psychotherapist takes an active part and guides those present.

Support groups do not engage in psychotherapy  - they are created to share experiences and provide support in difficult situations. They can be conducted by both specialists and people without specialized education. The main criterion is that they must have the same experience as the group members. At the meetings themselves, they act as facilitators - this is the name given to the presenters who ensure that the meetings take place without violating the rules and give the floor to each participant.

Group therapy meetings are often called support groups. On the one hand, this is incorrect. On the other hand, such groups often contain elements of both psychotherapy and support groups. 

It is worth leaving the group or starting to combine it with personal psychotherapy if, on the contrary, your mood only deteriorates and you notice constant anxiety. You can also check your condition through questionnaires (the second link is in English, but online translators will help you), and if the indicators are not very good, go to a psychologist or psychotherapist, who, if necessary, will refer you to a psychiatrist.

If you think support groups and psychotherapy are not for you

 

If you are not ready to participate in a support group and think that you do not need psychotherapy, you can learn about other people’s experiences through books and articles (usually monologues of people living with or surviving some kind of illness). For example, the director of the autonomous non-profit organization.

There are also many books about life with autism spectrum disorder , cancer and many other situations. Just search on the Internet or ask around in specialized groups.

Try finding a support group (online meetings are just as good)

Basically the support group is free. Sometimes they charge for meetings or ask for donations to keep the group going.

You can search not only for groups in your city, but also for online meetings. There is no particular difference in how meetings are conducted. Evidence from a recent systematic review suggests that people also feel better after meeting online.

Non-profit organizations (NPOs)

Non-profit organizations often create support groups in different cities. For example, the AIDS.CENTER Foundation has groups for people living with HIV, drug users and many others. The Clear Morning service, which helps people with cancer and their families, has also created a support group for patients and for those who have lost a loved one. And the ANO “Like You” basically grew out of a support group for people with bipolar affective disorder (BAD). Now this business is actively developing and now covers not only people with bipolar disorder, but also those with other mental disorders, as well as their relatives. In the same section there is a list of support groups created by other people.

Sometimes such NPOs are most active on social networks. Therefore, there you can write in the search bar “support group for …” - and you will probably find what you need. 

Medical organizations

Some public and private hospitals, dispensaries and clinics have their own support groups. This may be an initiative of employees or patients of the medical organization itself, or it may be a form of report on mandatory “rehabilitation activities.” Rehabilitation can be called psychoeducation, social skills training, family therapy, group therapy and support groups.

 

If you haven't found a suitable support group, create your own 

To create a support group, you do not need to be a specialist in medicine or psychology. It is enough to have experience of living with a certain diagnosis or experience of living with a person who has such a diagnosis. And of course, the desire to share this experience and give others the opportunity to do the same.

There is no single set of rules in the world on how to create and lead support groups. Each community or organization writes its own code of ethics and rules based on experience. And complements them if precedents appear.

Step-by-step instruction

Step 1 . Find like-minded people with similar experiences. The maximum number of people in a group is 10–12. If there are fewer of them, good; if there are more, it’s time to open a new group. It is important that meetings allow everyone time to speak.

 

Usually like-minded people are looked for in two ways:

  1. Through doctors - you can seek help from specialists who can pass on news about the support group to their patients.
  2. Through groups of patients with a disease you are interested in on social networks - leave an announcement that you have created a support group and are ready to recruit people into it in a community where people are interested in learning about it.
 

Step 2 . Assess your capabilities and delegate some of the responsibilities to other participants: assign one of the participants to purchase drinks, cookies or other snacks for meetings, find a suitable room for everyone, publish on social networks about your group to recruit participants, compile questionnaires for feedback.

Step 3 . Find a place to meet regularly or start an online group.

 

An ideal meeting place should be easily accessible. That is, you don’t need to wander around for a long time in search of the right door or travel with transfers. Also, the place should be comfortable so that strangers do not pass by and cannot hear what is not intended for other people’s ears. In general, what such a place should look like is well shown in the movies. This is usually a large room with many chairs arranged in a circle. This is necessary so that all participants can see each other. 

It would be great if you have the opportunity to rent a room for regular meetings. It is worth paying attention to various coworking spaces, cultural and psychological centers. The guide , Self-Help Groups for People with Bipolar Disorder and Depression, gives advice on how to get free meeting space: Look for organizations that provide charity, social support, and education. They are often willing to help and provide meeting space during their non-working hours.

Also, the manual does not advise choosing a cafe or someone’s housing: many people may find conversations there insufficiently confidential and they simply will not come. At the meeting, everyone should hear each other well and communicate on serious topics.

 

Step 4 . Define support group rules.

 

Each group has its own set of rules, but abroad all groups try to adhere to these principles :

  • Confidentiality. Everything that happens in the group stays in it. But even during meetings, you should not tell details about the life of your relative - the group gathers so that the participants discuss their own feelings, and not talk about a third person. To ensure that the privacy of the participants is more likely to be respected.
  • Non-judgmental. Participants should avoid any value judgments and criticism. If you want to share something, speak in the first person in the form of “I statements” (“I feel sad when I hear...”, “I feel angry when I notice...”, “this rule works in my case”). , and not in the imperative form. 
  • Right to silence. People should be encouraged to talk about their feelings, but if a participant does not want to share them and is here to listen to others, give him this opportunity.
  • Sharing of responsibilities. All participants should be involved in the process and sometimes change their roles in the group: the one who poured tea for everyone at one meeting can lead the group another time.
  • Equality . Everyone in the group is equal - no one is better or worse. Avoid any form of discrimination in meetings and focus more on what brings the participants together.

Step 5 . Hold the first meeting to understand what other members expect from the group.

Step 6 . Formulate questions and topics for the next meetings.

Step 7 . Decide on a group format: peer-to-peer, 12-step, or meetings with specialists. But in general, nothing prevents you from trying different formats and eventually finding the right one.

Most groups are built on the peer-to-peer principle. “The leader in them is a person who is in the same situation as the other participants. There is no most important thing in the group,” explains.

At meetings with the participation of specialists, the leader is a person who has a special education and is not in the same life situation as other participants. He may be a psychologist, but he does not conduct therapy at meetings. He is simply trained to interact with people and teaches them how to interact with each other and follow the rules.

Peer-to-peer groups focus more on sharing experiences. With a psychologist, meetings have an educational part, and if it is needed, the group can be supplemented with this. For example, both types of studies for people with bipolar disorder found that participants received similar levels of support.

Finally, there are groups that rely on a set of principles in the 12-step program . Meetings will be held on this basis (this is not the same as 12 classes with a specific topic). This form is usually chosen for people with various addictions -  this mainly  concerns alcohol and drugs, but, for example, there are groups for  gamblers  - addicted to gambling.

Step 8: Reconsider whether you will meet in person or online. You can try to start with a face-to-face meeting (especially if the first meeting went that way) and see if it works. No - there is nothing wrong with online meetings.

When choosing a format, you should focus on how many people you can recruit in a face-to-face format. If the group is large and there is a place where you can gather, try the in-person option.

If there are two or three people in the city, then perhaps it is better to look for like-minded people online.

Also consider whether participants will be able to attend meetings regularly without rescheduling. If dates are constantly shifting, it is again better to gather online.

Step 9 . Give yourself a break and involve others in group activities when you need help.

Step 10 . Include members in the leadership of the group to encourage them to continue attending the group, and don't be afraid to ask for donations.

Step 11 . Develop the group and yourself through - they  are conducted free of charge by the ANO “Partnership of Equals”.

In some cases, like the Family Connections group , the number of meetings is limited. But more often than not, support groups have no limit on how long you need to attend. It depends only on your desire - the need for psychoeducation or simply human support. Then continue going to groups until you feel the strength to continue living without such support. But remember that you can always return to it.