I have suffered from MCS for nearly 15 years and, as I am sure you all well know, it has been greatly impacting my life, particularly where church worship is concerned. I am trying to get my church leadership to develop a policy that would be protective of those of us with MCS, but need the help of other sufferers.

I recently received an email from the director of disability services for my church asking for information and research on MCS and for ways to connect with other sufferers, particularly those who are members of our Church. It sounds like, given the right information and the right number of people writing in, this might actually result in a change in church policy.

I don't know how many there may be here who would be willing to help with this, but I would appreciate it if some or all of you (particularly those who may be members of the Church of Jesus Christ of Latter-day Saints) would be willing to read my blog entry on the subject and email the person in question. It could mean the difference between further isolation and being able to actually worship in safety for many of us out there.

Thanks ... and I am glad I found this forum. I am sure I will be back.

aspiemama.livejournal.com/71719.html

Hi Raelara,

Welcome to the EiR forums

Sorry to hear you have been battling MCS for so long. I am now recovered (or perhaps just in remission) but was acutely sensitive to chemicals and living in total isolation wearing a carbon filter face mask for a number of years. It is so difficult to explain to those unaffected how life altering this condition is.

I am not a member of a church (my spiritual beliefs are more in line with those of Eastern religions) but I certainly understand that faith (in whatever form) has a huge role to play in helping us cope when we are faced with a challenge like MCS. As such it is only right that policies should be put in place to allow you to attend your church safe in the knowledge that it won't trigger or exacerbate your symptoms. It is great to hear you are making such great efforts to make sure this happens.

Have you come across the work of Pamela Reed Gibson, PhD? She is Associate Professor of Psychology at James Madison University, Virginia, and has done a lot of research into the impacts of MCS on the lives of sufferers. She has an excellent book which if you can afford a copy and could pass on to the Director of Disability Services at your church I'm sure would help your case immensely. The book is called Multiple Chemical Sensitivity: A Survival Guide

Professor Gibson also has a website discussing her work - Multiple Chemical Sensitivity (MCS Research at James Madison University)

I hope this helps and good luck.