People with environmental illnesses help each other
despite their disability

Keywords: environmental illness, electrical hypersensitivity, EHS, activists, support, volunteers, organizations, disability

A member wrote to the Swedish EHS organization FEB, complaining that the organization does not do enough for its members. The following is part of the reply:

There is empathy and creative ideas, there is the will to help our members, but we lack the energy and stamina. As an example, let me tell about the situation in the Värmland organization [one of the FEB county chapters, ed.], whose leadership I am a part of.

One board member is able to use a computer, but only for short periods. Two board members are holding onto their jobs, but their spare time is spent recovering before their next workday. One of these two is our secretary, who sometimes has so much pain in her hands that she cannot hold a pencil. Our organization has an excellent treasurer, but she is unable to attend our meetings due to her health.

Another board member lives alone in a large forest, completely without electricity. She has 10 km (6 miles) to her mailbox, no car and no organized assistance.

Our youngest board member is a highly electrically sensitive woman, who recently had to return to work after her maternity leave. She knew in advance that she would not do well at her workplace, but had to try anyway. Her boss was so shaken when he saw how severely she was affected, that he offered to drive her home.

Myself, I live without electricity or telephone. The telephone company dismantled the landlines in the area I live.

The members of our board do not lack the will to help others, it is actually what has compelled us to join the board and what holds us together. But the tough circumstances we live under limit what we can do. Despite these limitations, we do what we can.

We have talked to other chapters of FEB, and their situations are very similar. They help and support their members as much as they can, with everything from moral support to applications and help finding a place to live, but there are not enough people to do the needed projects.

The existence of FEB is based on the efforts of its members. The more who contribute, the more we can accomplish. All respect to the person who wrote the complaint, but letters to the editor do not help our members to a life with dignity. It is the actual efforts that count.

The above reply was written by Susanne Gislason, who permitted us to translate it from Swedish for this website. The original complaint and Gislason’s reply were both brought in the 2013/4 issue of Ljusglimten, which is published by FEB — the Swedish EHS patient organization.

2014