• The online Community for people with spinal cord injury, their relatives and friends

  • The online Community for people with spinal cord injury, their relatives and friends

  • The online Community for people with spinal cord injury, their relatives and friends

Many people feel lonely

Pro-WELL study – partnership – "stressors"

The Pro-WELL study is a representative survey on the well-being of 133 couples where one of the partners is paraplegic. The study was financed by the Swiss National Science Foundation. However, it is part of the big social research project SwiSCI by Swiss Paraplegic Research. This study aims to investigate how “People with SCI & other disabilities” cope in life.

In September, the researchers invited the couples surveyed to Nottwil, to present them with the results of the study. It was a very cordial meeting. Unfortunately, only eight of the surveyed couples were present, but at least their profiles were very different. Erwin Zemp, Member of the Board of Trustees of Swiss Paraplegic Foundation and Head of the department Life Guidance of Swiss Paraplegics Association, was also there. A lively discussion developed.

The deeper the relationship, the better it endures the burden associated with the disability.

The results of the survey mostly confirmed, what people had already expected – also some old worldly wisdoms. But thanks to Pro-WELL, they are now statistically proven. Nowadays, this is the only way to justify therapeutic projects and to achieve political demands.

The survey answers prove that well-being and quality of the relationship, but also health and vitality are interdependent. This also proves other related principles: The more we care for our partner, the more we can expect to receive. This determines the quality of our (love) relationship. The deeper the relationship, the better it endures the burden associated with the disability: The impaired person also impairs their fellow human beings. Therefore, couples are not only connected, but also wedged and have to preserve their relationship more than others.

Almost half of the people with SCI state that they feel lonely time and again.

This also results in roll and loyalty conflicts, which are also described in the study: The working partner without SCI who also cares for his/her partner, is always torn, because he/she repeatedly faces the conflict whom to serve first. And many disabled people think they have to compensate their alleged physical weaknesses with great enthusiasm at work.

The authors of the study refer to these conflicts as “stressors” that increase the already existing pressure. They recommend to mitigate – or even better – avoid these situations. They also recommend speaking with the employer about this problem. We perceive each conflict, each “stressor” as a disproportionate burden. This might lead to depression and circulatory problems: we end up in a vicious circle that results in loneliness. According to the survey, this is already part of our lives: almost half of the people with SCI state that they feel lonely time and again, whereas it’s only one third of their partners. This result is surprising with respect to its extent. The study only reveals it.

We can only speculate about the reasons: As wheelchair users, we frequently assume the role of the crank – even if we are together with other people. When we are together with others – even in intimate partnerships – we often realize that people without SCI have no clue what it means to live with it. Sometimes, we are surprised to see, what it does to us. And then we feel lonely!

The more laid back we are, the easier and better our social life. This was also proven by the results of the study.


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