MPS Europe has provided Support rooms for adult MPS patients every Saturday during Covid-19 pandemic. Until now we had more than 10 Support rooms. And I would like to share our experience and show how lockdown, fears and uncertainty can be manageable when we are not alone.
What are groups and what is their benefit?
In the 19th century groups were found as a place for people, especially people who shared same experience or have dealt with same challenges (alcoholism, people with diseases such as tuberculosis etc.). Group has its own dynamic, it consists from different individuals who usually have something in common, however they all have their own characters, skills, ways of communication. Group is not just sum of parts; group has its purpose and identity.
Our Support room from the beginning had as a goal support, support that every individual can get from other participants, same as from the therapist. MPS patients have a lot of challenges, especially in the area of health care and during crisis, interventions have been cancelled or postponed, therapy at home was stopped and isolation brought again feelings of loneliness, sadness, fear and confusion. All of these pointed that additional support is needed and who can provided it if not people with same conditions, with same needs.
Why groups are important?
Identification with others– Helps us feel we are not the only person in the world with these thoughts, experiences and fears.
Hope and faith– We see others dealing with problems, we follow their direction and path and over time we can believe that change is possible.
Communication skills– Learn how to say what you want, to ask for what you need. Accept yours and other people’s boundaries and learn how to accept critics and to get best from it.
Understanding and altruism- Sometimes explanation is not needed because we have similar symptoms, similar problems and we feel like others can easily understand us. We get compassion, without too many words. We value others wish to help us and we enjoy helping others.
On our groups we talk, we laugh, we cry, we sing, we draw, we imagine. We don’t speak same language, sometimes we act, we have pantomime, and we find a way to be heard, seen, accepted and loved. We are here for others, others are here for us. Sense of connection, intimacy and closeness increases each Saturday. I know I am not alone, I know this will pass and I am doing my best to be present now, in this crisis, with others.
If you would like to join us, write us at firstname.lastname@example.org
By Andrea Nenadic,