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Self-help groups

Exchan­ging exper­i­ences in a group of indi­vidu­als impacted by sim­il­ar cir­cum­stances can be of great bene­fit to patients with sys­tem­ic lupus eryth­em­atosus for sev­er­al reasons.

You will find sup­port and under­stand­ing in a self-help group. You will meet indi­vidu­als who under­stand your chal­lenges and exper­i­ences. The feel­ing of com­munity is com­fort­ing. You are not alone. The group helps you, as an affected indi­vidu­al, to feel sup­por­ted and bet­ter informed. Reg­u­lar meet­ings help you cope with daily life with the ill­ness. You learn to bet­ter per­ceive and com­mu­nic­ate your own needs.

Inform­a­tion and Resources: In a self-help group, you can exchange inform­a­tion about your daily life with lupus, your cop­ing strategies, and resources. You can also share your exper­i­ences with ther­apies. How­ever, you will nev­er receive advice or med­ic­al treat­ment sug­ges­tions. Group mem­bers are affected indi­vidu­als, not treat­ing physicians.

Clear rules in a self-help group: The lupus self-help groups are sup­por­ted by lupus suisse. Group lead­ers are intro­duced to their role. They are encour­aged to cre­ate a charter for their group. This charter includes clear rules. First and fore­most, mutu­al respect applies. The group lead­ers learn and teach act­ive listen­ing. They always lead the group with good­will. Every mem­ber should feel wel­come, heard, and understood 

Emo­tion­al sup­port: Shar­ing exper­i­ences and emo­tions in a lupus self-help group can help reduce stress. Being a mem­ber of such a group reduces isol­a­tion. It reduces the feel­ing of being help­lessly at the mercy of the dis­ease. The solid­ar­ity and under­stand­ing of all mem­bers provide hope, renewed cour­age to live, and energy.

Organ­isa­tion

Our self-help groups organ­ize them­selves inde­pend­ently. Each group mem­ber has equal rights and shares responsibility. 

Mem­bers of a self-help group receive sup­port. They are them­selves an import­ant source of sup­port for the oth­er mem­bers. Each mem­ber is gen­er­ally will­ing to con­trib­ute to the group. Respect is para­mount. Act­ive listen­ing is fostered. 

The self-help group is not exclus­ively about lupus. Oth­er every­day top­ics can also be dis­cussed. Often, lupus impacts all areas of life. 
Con­tact the region­al group lead­ers in your area for more inform­a­tion. Find out when, where, and how the group meets. Learn how many mem­bers the group has. Ask if the group organ­izes excur­sions or oth­er events. 

The pre­requis­ite for join­ing a self-help group sup­por­ted by lupus suisse is your mem­ber­ship with lupus suisse. Self-help groups gen­er­ally also accept non-mem­bers for an ini­tial, non-bind­ing par­ti­cip­a­tion in a self-help group. 

New groups

Is there not yet a lupus self-help group in your region? You can start your own group at any time. lupus suisse will be happy to sup­port you and will also provide the appro­pri­ate train­ing and con­tinu­ing edu­ca­tion. Please con­tact the sec­ret­ari­at.

Groups

Here you will find more detailed inform­a­tion about the indi­vidu­al region­al groups or the option to make ini­tial con­tact via email.

Basel

Bern

Graubünden

Solo­thurn

Ticino

Vaud

Val­ais

Zurich

Con­tact

Take the oppor­tun­ity and call your region­al group lead­ers to attend one of the next meet­ings. They look for­ward to hear­ing from you. 

It is worth it, because solid­ar­ity can help you a great deal in cop­ing with lupus.

Our com­mit­ment to lupus suisse is vol­un­tary. Some of us are per­son­ally affected by lupus. We do our best to respond to ques­tions and con­cerns as quickly as pos­sible. If we can­not do this imme­di­ately and as quickly as expec­ted, we ask for your understanding.

Con­tact details are reserved for members.

Inform­a­tion about mem­ber­ship and its bene­fits can be found here:

Become a Member