More on my letter to the church about MCS
In this entry, I mentioned that my letter to the Ensign had been forwarded to the manager of disability resources for the Church. Surprisingly (since I have long since given up on humankind where this issue is concerned, unfortunately), he responded ...
Thank you so much for your email on multiple chemical sensitivity. I really appreciate you pointing this out as a concern, I look forward to learning more about it and so that I can be an advocate here at the Church Office Building. To help me do that, I would love it if you could provide me with some additional information.
While the information from Dr. Katherine’s website is informative, are there some more authoritative websites- maybe government or national organizations that provide some information that I could leverage?
Is there a good estimate of how many people suffer from MCS?
Do you know of any large organizations that have implemented a no-perfume policy? If I could look at some examples, that would be very helpful to understand how they would do it.
One of the concerns I am starting to think about is how we could enforce such a policy. It is one thing for a General Authority to announce it as a policy, but as you know there are at least some people who wouldn’t listen or need to be continually reminded. I guess in part I am wondering if it should/could be a policy or just a recommendation with some training materials for leaders and members.
Lastly, a couple of questions simply to help me understand the issue-
Thanks so much for your recommendation, I look forward to learning more!
--
Christopher Phillips
Disability Services
(801) 240-8318
http://disabilities.lds.org/
PhillipsCJ at ldschurch.org
Needless to say, I feel ill equipped to answer such a letter so I have put it off for a while. But, since it IS an opportunity for me to educate and, hopefully, make a difference for others, I finally bit the bullet and answered him tonight. I am not going to post my ENTIRE response as I gave him a few specific names of others that he can talk to and I don't think they want their names pasted on the internet, but I don't think that small omission will make a huge difference in the gist of the letter. And, hopefully, the information I gave him can enlighten other people as well ...
I wish there was more information that I could give you. The truth is that there is a lot more information out there on MCS now than there used to be. Three years ago people were still insisting that it was largely psychosomatic. I felt very blessed to find anything on it at all.
Hopefully, in the near future, studies will be done to pinpoint the cause and prevalence of this condition and to come up with a possible treatment. For now all I can tell you for sure is that when I was diagnosed about 10 years ago by Dr. Dennis Remington, M.D. (he used the term "perfume intolerance", if I remember right) there were only three other people I knew of in my city who suffered from this same condition. One of those three is an older lady who hasn't attended Sacrament meeting, or any other meetings, on a regular basis for over 30 years. Now I mention that I suffer from MCS and about half of the time people already know what it is. About 30% of the time the response I get is that either the person I am talking to also suffers from it or that they know someone who does. I also know that there are about 10 people in my ward who say they experience some degree of sensitivity to perfumes but who are uncomfortable saying anything about it to anyone. Understandably since there are still people who believe that my request that they not wear perfume is because I simply don't like the smell. It is hard to feel comfortable coming out with a condition like this that people honestly believe is "in your head".
I do know that my sister's ward in South Carolina has instituted a fragrance free policy due to the Bishop's wife being severely affected by some form of perfume sensitivity. My sister sent me a photograph of the notice that is posted on her ward building. It explains, to a degree, how they handle that policy. In addition to the sign, they also have a notice printed in the program every week reminding people of the importance of not wearing perfumes or other fragrances to church.
As for how I deal with public places with MCS, the simple answer is that I spend a LOT of time at home. And even being home isn't completely safe. I can't use cleaners of any kind, not even laundry detergent, nor can I use shampoo or conditioner or other personal care products because of the chemicals and perfumes in them. I use baking soda for shampoo, face wash, and deodorant. I try and use plant-based cleaners whenever possible. And I have to be very careful of second-hand fabrics and clothing that come into my home. The last time someone gave me fabric they had laundered at home I went through a week of being covered head-to-toe with severe hives before figuring out that the fabric being in my home was the cause. I removed the fabric and the hives disappeared.
When I do venture outside my home, I often am forced to wear surgical masks. That doesn't mean I am unaffected with the mask on, but surgical masks filter out about 30% of the chemicals I am exposed to. That is the difference between being able to go to Target and leave feeling well when, sans mask, I would leave feeling lethargic and fatigued. The temple is out of the question. The perfumes worn by the patrons are hard enough for my system to process, but the cleaners and carpet shampoos used in the temple cause enough problems that I react even in sealing sessions where the only people present are those who know about and respect my condition. So, needless to say, I can count the number of times my husband and I have been to the temple since our marriage on one hand. Every time I go, I risk my life and health, quite literally. It's very frustrating going to the temple expecting to feel edified and uplifted only to leave feeling tired, fatigued, and depressed.
My husband bought me tickets for our anniversary to see Lynda Carter perform in San Francisco this April. I LOVE Lynda Carter's music, but I am terrified. It will be the first time I have knowingly put myself in such a dangerous situation in years. Seeing Lynda will be worth it, but I can almost guarantee that I will be deathly ill (like can't get off the couch ill) for at least a week as a consequence.
I honestly wish that online communities existed for this condition. It would make this affliction a lot easier to bear. I can, however, give you the names of two church members in Utah who might be willing to talk to you ...
I wish I could be of more help, but hopefully this information helps you a little. Regardless of your decision, I appreciate you taking this issue seriously. I know that it is a controversial issue and you have already done more than I expected. Thank you for your care and concern.
So, hopefully this can be a catalyst to help people to better understand this condition and accommodate for it in the future.
I do have a request for you, my readers. If you suffer from MCS or any form of perfume/chemical sensitivity, please call or email Brother Philips (contact information is listed above) and tell him your story. If you can answer the questions I couldn't, particularly regarding research on this condition and online support groups, please comment here and let him know as well. The more perspectives he has on this issue, particularly from members of the Church, the faster something will be able to be done to make worship safer for everyone.
Thank you so much for your email on multiple chemical sensitivity. I really appreciate you pointing this out as a concern, I look forward to learning more about it and so that I can be an advocate here at the Church Office Building. To help me do that, I would love it if you could provide me with some additional information.
While the information from Dr. Katherine’s website is informative, are there some more authoritative websites- maybe government or national organizations that provide some information that I could leverage?
Is there a good estimate of how many people suffer from MCS?
Do you know of any large organizations that have implemented a no-perfume policy? If I could look at some examples, that would be very helpful to understand how they would do it.
One of the concerns I am starting to think about is how we could enforce such a policy. It is one thing for a General Authority to announce it as a policy, but as you know there are at least some people who wouldn’t listen or need to be continually reminded. I guess in part I am wondering if it should/could be a policy or just a recommendation with some training materials for leaders and members.
Lastly, a couple of questions simply to help me understand the issue-
- How do you (or others with MCS) deal with public places in general- do you have to avoid large crowds in general?
- Are you aware of any good online communities of members with MCS to help me get in touch with others?
Thanks so much for your recommendation, I look forward to learning more!
--
Christopher Phillips
Disability Services
(801) 240-8318
http://disabilities.lds.org/
PhillipsCJ at ldschurch.org
Needless to say, I feel ill equipped to answer such a letter so I have put it off for a while. But, since it IS an opportunity for me to educate and, hopefully, make a difference for others, I finally bit the bullet and answered him tonight. I am not going to post my ENTIRE response as I gave him a few specific names of others that he can talk to and I don't think they want their names pasted on the internet, but I don't think that small omission will make a huge difference in the gist of the letter. And, hopefully, the information I gave him can enlighten other people as well ...
I wish there was more information that I could give you. The truth is that there is a lot more information out there on MCS now than there used to be. Three years ago people were still insisting that it was largely psychosomatic. I felt very blessed to find anything on it at all.
Hopefully, in the near future, studies will be done to pinpoint the cause and prevalence of this condition and to come up with a possible treatment. For now all I can tell you for sure is that when I was diagnosed about 10 years ago by Dr. Dennis Remington, M.D. (he used the term "perfume intolerance", if I remember right) there were only three other people I knew of in my city who suffered from this same condition. One of those three is an older lady who hasn't attended Sacrament meeting, or any other meetings, on a regular basis for over 30 years. Now I mention that I suffer from MCS and about half of the time people already know what it is. About 30% of the time the response I get is that either the person I am talking to also suffers from it or that they know someone who does. I also know that there are about 10 people in my ward who say they experience some degree of sensitivity to perfumes but who are uncomfortable saying anything about it to anyone. Understandably since there are still people who believe that my request that they not wear perfume is because I simply don't like the smell. It is hard to feel comfortable coming out with a condition like this that people honestly believe is "in your head".
I do know that my sister's ward in South Carolina has instituted a fragrance free policy due to the Bishop's wife being severely affected by some form of perfume sensitivity. My sister sent me a photograph of the notice that is posted on her ward building. It explains, to a degree, how they handle that policy. In addition to the sign, they also have a notice printed in the program every week reminding people of the importance of not wearing perfumes or other fragrances to church.
As for how I deal with public places with MCS, the simple answer is that I spend a LOT of time at home. And even being home isn't completely safe. I can't use cleaners of any kind, not even laundry detergent, nor can I use shampoo or conditioner or other personal care products because of the chemicals and perfumes in them. I use baking soda for shampoo, face wash, and deodorant. I try and use plant-based cleaners whenever possible. And I have to be very careful of second-hand fabrics and clothing that come into my home. The last time someone gave me fabric they had laundered at home I went through a week of being covered head-to-toe with severe hives before figuring out that the fabric being in my home was the cause. I removed the fabric and the hives disappeared.
When I do venture outside my home, I often am forced to wear surgical masks. That doesn't mean I am unaffected with the mask on, but surgical masks filter out about 30% of the chemicals I am exposed to. That is the difference between being able to go to Target and leave feeling well when, sans mask, I would leave feeling lethargic and fatigued. The temple is out of the question. The perfumes worn by the patrons are hard enough for my system to process, but the cleaners and carpet shampoos used in the temple cause enough problems that I react even in sealing sessions where the only people present are those who know about and respect my condition. So, needless to say, I can count the number of times my husband and I have been to the temple since our marriage on one hand. Every time I go, I risk my life and health, quite literally. It's very frustrating going to the temple expecting to feel edified and uplifted only to leave feeling tired, fatigued, and depressed.
My husband bought me tickets for our anniversary to see Lynda Carter perform in San Francisco this April. I LOVE Lynda Carter's music, but I am terrified. It will be the first time I have knowingly put myself in such a dangerous situation in years. Seeing Lynda will be worth it, but I can almost guarantee that I will be deathly ill (like can't get off the couch ill) for at least a week as a consequence.
I honestly wish that online communities existed for this condition. It would make this affliction a lot easier to bear. I can, however, give you the names of two church members in Utah who might be willing to talk to you ...
I wish I could be of more help, but hopefully this information helps you a little. Regardless of your decision, I appreciate you taking this issue seriously. I know that it is a controversial issue and you have already done more than I expected. Thank you for your care and concern.
So, hopefully this can be a catalyst to help people to better understand this condition and accommodate for it in the future.
I do have a request for you, my readers. If you suffer from MCS or any form of perfume/chemical sensitivity, please call or email Brother Philips (contact information is listed above) and tell him your story. If you can answer the questions I couldn't, particularly regarding research on this condition and online support groups, please comment here and let him know as well. The more perspectives he has on this issue, particularly from members of the Church, the faster something will be able to be done to make worship safer for everyone.