I can't attend church - perfume


Guest DeborahC
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Guest DeborahC

Well, I've had this discussion here before a few years back, but recently I tried attending church again.

No go.

I tried attending for a month. I would go to meetings on Sunday and then have to go to bed for 3 days with swollen joints, brain fog, and vertigo. It's just not worth it to be sick half the week.

I'm poisoned by people's perfumes, colognes, fragranced laundry detergents, fabric softeners, lotions, and hair products.

This is not an allergy. It is a response to the chemicals used in these products.

I'm the canary in the coalmine, but people just don't listen. :(

Soooo... this forum is my connection to church... along with the Ensign and a nice visiting teacher.

At least one stake has posted "Fragrance Free Zone" signs on their doors... I am praying that will spread so those of us who cannot bear chemically scented products can finally attend our meetings.

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Just an idea. But have you tried to maybe come to church and just sit in the foyer? That might not work so well if you have multiple wards in the same building.

The only other option is go to the mothers lounge. Not every church now days has this. You would have to figure out if any churches in your stake (most likely the stake center) . Again this would allow you to hear the sacrament meeting talk, you would probably have to make arrangements for one of the deacons to come and find you, which might end up causing more problems if somebody else is in there with you.

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  • 1 year later...

I could stop feeling sorry for myself, because I, too, have MCS.

I've been ill with it for over a decade. Yes, there is more support from the scientific community for multiple chemical sensitivity now than there was even a few years ago. There are more scientists (especially toxicologists) who are acknowledging it. The medical profession (allopathy especially) will always lag behind, so sometimes medical doctors in *your* ward will be less than understanding. Also, those in a ward who work with chemicals may not be very understanding.

I found a way to attend and avoid chemicals by having a calling where I sat in the very back at the front of the church (in the choir section), because I led the singing, but even then I often had to leave if someone was wearing a personal care product that was filled with chemicals. I am sensitive to petrochemicals, formaldehydes, etc., and those preservatives are found in many things; I think it is getting worse.

At this time I can't attend at all, because my building got new carpets, and they aren't offgassing well. I have a heart problem (genetic, inoperable due to my sensitivity; surgery would probably kill me), and my heart responds before anything else--

I am also an older woman.

I haven't been able to go to church for almost 3 years now. A former bishop who recognizes the existence of MCS believes our church is 'sick', a toxic building, because even people without MCS have had a hard time. I've tried air filters (dragging mine from home) in the tiled kitchen, etc., all to no avail.

I attend 'parking lot' every week when I am well enough. I have a few other health problems (stemming from the MCS) that I am always 'battling', but most of the time I am in pretty good health--:)

Every week I drive my driver and nondriver to church; one has a calling that requires her to be there a little early; the other doesn't yet have a license; my husband goes to an early meeting--

and then I wait in the car; my husband comes out and gives me the sacrament. We have to make it up ourselves, because I can't have wheat, so I make a wafer from grains I can eat--

and I also am sensitive to municipal water, so I have to take my own filtered water--

the deacons in our ward have been pretty wonderful--

but last spring/summer I was terribly ill . . . dangerously ill, and I couldn't sit in the car, and the stake president told our bishop that there had to be a priesthood holder to help my husband give me the sacrament. Well, there are none in our ward except two elderly men with health issues . . . who aren't stinky who can come to our home--

so I went for FIVE MONTHS without the sacrament. I often cried. I often felt sorry for myself. Now that I can go back to 'parking lot', which I've done since the building became toxic . . .

it's better--

but today my entire family had to go very early, and I had gotten a virus, and I didn't feel strong enough to sit for hours and wait for the sacrament without a place to go to the bathroom--LOL!

So I was feeling sorry for myself this morning--

I read my scriptures; I have e-pals with MCS, and we talk about it sometimes--

sometimes I cry; this morning my husband cried when he left me; we are older; we are grandparents (our married children live far away from us)--

there are no other buildings within 50 miles, and our stake president is the director of temporal affairs for our area, and he loves to put new carpets in, bless him--

:P

I know that bitterness doesn't work, and I know Father in Heaven and Jesus Christ love me.

The hardest thing for me is the loneliness, because I am isolated due to my MCS most of the time anyway--

and the ward tends to have forgotten me. Many don't believe MCS is 'real', which makes me kind of feel sorry for THEM, to be honest. I mean, people can be insensitive, due to ignorance or due to meanness, and both of those things should bring out compassion in those who are being treated badly. Ignorance is not a trait to be coveted; meanness even less so--

so I do feel sorry for those who: l) don't care, 2) don't understand, 3) look down on me somehow--

I have been very active my entire life. Returned missionary, graduated from BYU, etc., etc., etc., etc.--temple married--

but I have found that this is a good litmus test to see what kinds of hearts my fellow members have. Those who forget about me just really aren't very Christlike, I am afraid--

OR they are having their own struggles. But . . . if they forget about me, because they are overwhelmed or having ill health themselves I can sort of sense that; those who forget about me, because they think I am 'crazy' . . . --I leave to let the Lord sort them out--

Anyway, you haven't posted for a year, and I tried googling for this topic within the past year, so . . .

I wonder if you will respond--

I am an 'expert'; I don't mean to sound arrogant, but I have studied this much, and there isn't much anyone can do to convince me that MCS isn't real--

I have learned to stand up for myself without being obnoxious or offensive--

I had to leave one other LDS online community, because several on there were really mean-hearted about MCS--

so I left--

I won't take nonsense, but I also don't expect to inconvenience anyone for my health--

If people want to expose themselves and their loved ones to toxic chemicals, then I am afraid they will have to eventually realize the consequences.

I think this is 'bigger' than most realize. In our ward there are SO many new cancer victims--

and I wonder if it's because of the toxic building, but nobody will listen to me (one leader alone believes the building is toxic, and he and his wife are currently serving a mission elsewhere and have had no health problems connected with the building anyway)--

Anyone out there alone with this? Need to talk? I'm your MCS person! LOL!

:)

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People respond a lot better to requests when they aren't peppered with hyperbole like "your perfume is poisoning me" and "I'm a canary in a coalmine". Human nature is to see it as dramatic attention-seeking and mentally roll their eyes.

More effective would be a matter-of-fact, "I have a condition that makes me very sensitive to fragrances. I would appreciate it if everyone would make an effort not to wear them to church, so that I can come without getting a migraine and respiratory problems."

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I don't know if the original poster is here anymore, but I was googling this topic today and found this forum and joined so I could respond.

You are correct, Eowyn--

I have never asked anyone to be fragrance free (or chemical free) for me--

but then I have never believed in pushing my beliefs on others, even though I served a mission and did it 'kindly' for 18 months--LOL!

The fact is that until a human being has an experience him/herself, he/she cannot usually understand others' situations--

People poison themselves with many things (contraband substances, as per the Word of Wisdom, junk food, etc.)--

and sometimes people poison others, but no human being will change until he/she has a desire to change. It is really ineffective to try to help others to change their habits. Few people have had success trying to get loved ones to stop smoking, drinking, using drugs, eating unhealthily, etc.--

The Spirit often helps--

When a person is hurt by what others do, it becomes much more tricky--

very complicated . . .

I stay away, but I still miss the fellowship of other members--

I kind of lump it into the 'perplexing mortality issues' category and try to move on with my life, but it's not easy to do--

trials aren't easy--

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This condition can be alleviated by education. But, like Eowyn said, it is harder for people to take you seriously if you tell a perfume wearer (as I am myself) that you are poisoning your own body. Uh, no, I'm not... make sense?

But MCS is a very REAL condition just as real as my son's crazy reaction to cats when he has 2 pet dogs, a couple pet rats, and 4 parakeets. People usually loook at him like - you're the kid with all these pets and you can't enter a house that has been vacant for over a year because you are allergic to the cat that lived there over a year ago?

So, it would help those with MCS to be kind and gentle to us ignorant folks and strive for education. Here's a good link:

Mormonism-Unveiled: Fact Vs. Fancy: When Perfume Becomes Poison: Multiple Chemical Sensitivity (MCS) And LDS Church Meetings

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Using the word 'perfume' is a problem for those of us with MCS. Chemicals make me terribly ill, but, believe it or not, some 'scents' (when they are natural and not personally allergenic) don't bother everyone with MCS.

"Perfume" used to mean botanical oils and fragrances, but it ceased to mean that when the chemical industry convinced perfumers that they needed to put 'stabilizers' and 'preservatives' and 'carriers' in their products.

There are still some completely 'natural' products out there. Some of them have natural compounds in them that make some very sensitive people ill, but others of them are not very offensive to anyone.

"Real" perfumes are not the culprit.

So, yes, generally speaking, chemicals are poisoning humanity, and LDS, who have scriptures which warn of 'pollutions' in the last days might consider the connection.

I repeat, I have NEVER, ever, ever asked anyone not to wear anything. But my leaving a room, even as I make an attempt to keep all expressions from my face or behave in an apologetic manner . . . has offended people--

THAT is hard thing to get around--

My condition offends people, even if I don't open my mouth--

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Also, I have never asked a priesthood leader to intervene for me (my husband is active, but I am referring to bishops/stake presidents)--

I have, when asked, tried to help leaders to see that sometimes those of us with MCS are treated like lepers--

I can remember, before I had MCS, hearing a group of LDS sisters whom I believed to be very kind people, discussing a woman who rarely came to church anymore, even though she had been known for her faithfulness . . . and her husband was in a stake leadership position, and all of her children attended and she had a child on a mission--

"she says she can't handle perfumes, but I wonder"--

several sisters in the group 'sniffed' or 'snorted' in disbelief, and the sister was relegated to the category of 'crank', because she had left choir practice a month or so before and when asked was told, "I have a terrible headache"--

She, too, was trying to be kind, and the response was that there was something 'wrong' with her that went beyond any physical illness.

I did not want to be discussed in that way, and at the time I determined that, though MCS would never happen to me, if it did I would be private about it.

Did I escape judgement? No--

I am a leper.

I am invisible. I am ignored. A few times when I have gone to church and sat in the back or in a place 'away' and smiled at anyone who came near . . . I was told that my problem was 'psychological'--

once by a medical doctor in the ward and once by a chemist, both members of the bishopric--

I have come to see why people with MCS who do NOT want to offend the 'normal' among *us* . . . just disappear--

let 'people' think *us* inactive, though we spend our Sunday mornings reading our scriptures and crying and praying--

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this is only one very tiny example of what *I* mean when I say that chemicals are 'poisoning' everyone--

HORMONE IMBALANCE CAUSED BY XENOESTROGENS KNOWN AS ENVIRONMENTAL ESTROGENS, CHEMICAL ESTROGENS, OR SYNTHETIC ESTROGENS ACT LIKE YOUR OWN ESTROGEN

This isn't everything; this isn't even a thorough explanation.

But chemicals are wrecking havoc with human beings--

If *your* perfume is a simple scent, without additives, then you probably are not poisoning yourself, and there's a very good chance that even some people with MCS could use that 'perfume'--

but there aren't very many 'pure' perfumes left, and they tend to be expensive. What some people think of as 'perfume' is actually perceived by many with MCS as a 'stink'--

because those of us with MCS tend to sense the chemicals that are in the 'scent'--and the scent that those without MCS do sense is simply not available to those with MCS--

Recently I heard someone at my door, and I was needing to go outside for some other reason, so I met the 'solicitor' in my front yard and said, "may I help you?"--

The person was selling something and was a little aggressive. I backed away, because I had a strong 'warning' of chemicals--

She kept following me, and I laughed and said, "I have MCS, and something you are using is causing a reaction in me"--

She was very offended (this was my front yard, near my front door) and said, "I am not WEARING ANYTHING!"--

and left.

What does a person do?

I am sorry to anyone who thinks I am being patronizing, who thinks that I believe that anyone who doesn't understand is 'ignorant'. I am merely making a valid point that until something (anything) touches *us* we don't generally understand it well.

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I started with Fibromyalgia and in the 23 years since I have developed several other issues. Among them is a strong negative response to a lot of chemicals. I don't have MCS but I have sensitivities.

What I've found is that most people just don't know what to do, how to act, what to say, or how to approach a person who has an illness they don't understand. So instead of doing the wrong thing they do nothing. Doing nothing isn't always the right thing but its safer than doing more harm when there is no understanding about what the right thing to do or say is.

I understand deeply the feelings of loneliness. I understand the feelings that people don't understand. They don't.

In your posts here there is a strong assumption that everyone thinks you're crazy. Unless they have stated in those words to your face or your family then its just your opinion and feeling or assumption about how they feel/think. Just as we are often misunderstood when our health issues interfere, so can we misunderstand other peoples' reactions.

I have found it helpful to not assume someone is offended or thinks I'm nuts because I have to miss meetings or have to walk out of a class, or not participate in choir. I learned the hard way that someone wasn't thinking or feeling the way I felt she was towards me. It really humbled me and helped me to understand that we're all here having a human experience.

What helped is talking about my challenges. Its taken a long time but now even some of the sisters who I felt were judging me and being unkind are the ones calling and asking advice on doctors and similar issues which are developing in their lives.

Educating ourselves and those around us is the key. You have done well with yourself. Maybe its time to help educate the people around you? Maybe start with the Bishop? At least have the sacrament brought to your home.

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I take the sacrament in the parking lot; my husband brings it to me. There aren't any 'safe' younger men who could help my active, priesthood-holding husband give me the sacrament--

the parking lot works for me; people will say they are 'chemical free' when they are not--and come into the home, and that is not happy.

I'm sorry I gave anyone the idea that I think everyone thinks I am crazy. Perhaps a very few strong-minded and opinionated people who have stated that (one to my face, a bishopric member who is a chemist and another to my husband, a medical doctor, and several people who have, literally, argued with me about MCS when I haven't even approached them or had anything to do with them, people who 'heard' I had it and came running to point out how 'wrong' I was)--

I perhaps am a bit too sensitive. I would rather err on the side of caution and not expose myself. Most people with MCS or any kind of sensitivity (I have other health issues as well) . . . also have other challenges in their lives and aren't any more 'perfect' at dealing with their challenges as people who do not have this condition.

However, I have never heard of anyone with cancer being questioned about the reality of their disease, and often in our ward people with cancer are prayed for over the pulpit. I've never asked for prayers, though I was seriously ill (non-cancer) last year, so very ill that there were times when I wasn't sure I was going to make it. Our members with cancer don't always ask for prayers, but there does seem to be more compassion.

So, I probably am defensive, but I certainly go out of my way not to be offensive. As I said, people with MCS also can have: children with problems, financial issues, etc.--

*We* are trying to survive like everyone else and could use understanding and compassion, not cross-examination, of which I have received enough.

I don't know what I have said that implies I haven't told my priesthood leaders anything. When I was very ill my husband went to our bishop and asked for help with the sacrament. Even though my husband is our ward's HPGL . . . our stake president said that another priesthood holder had to come to our home. I found out from many others with MCS that this was not required; it was also not required for our bishop to ask our stake president, but in my case that was what happened. I did feel a bit like a victim, but nobody in our ward knows I feel that way.

When we are 'hit', we tend to try to protect ourselves from further 'hitting'--

in our case a former bishop gave permission for my husband to bring the sacrament to our car (which is safe for me); I sit in the parking lot in all kinds of weather and wait; then I go home--

it works for me, better than having someone stinky come into our home and saying, "I'm not wearing anything"--

*sigh*

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grandmaofthree.

I do understand having an illness no one can see and no one believes is real. I've been living it for 23 years. Not even my RN mother believed me.

I do understand the spiritual pain you're experiencing. I hope that you can find a place of peace in your heart. Our Savior is there for us all. It took me a long time but I'm truly grateful for the health issues I face every day. Even when they make that day very difficult. The adversity in my life has brought me closer to my Savior.

Your will be in my prayers,

applepansy

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Thank you. I'm sorry about your mother. I have had a lot of peace, to be honest. There are times, however, when I feel the need to reach out, and there are times when I sorrow. Yesterday was one of them. I saw DeborahC's post when I googled and thought I would come on here to talk about MCS--

I'm sorry about your fibro. I have a mild case of it myself; some with MCS do. Mine is mild, thank heavens--

I understand your last sentence completely--

:)

prayers returned; :)

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bless your heart, thank you--

:)

I will check it out. I have tried one 'foolproof for MCS' mask, but I couldn't get enough oxygen through it, and I passed out. I tried wearing it several times and finally gave up--

My lungs have sustained some damage through the years, so I assumed this was it--

For years I did use a regular 'painting' mask, and it helped a little, and then I got to where I couldn't get enough air. So I tried the more $$ one for MCS, but it didn't work either.

My daughters both have allergies to pollen and dust; those are a trial, too, aren't they?

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bless your heart, thank you--

:)

I will check it out. I have tried one 'foolproof for MCS' mask, but I couldn't get enough oxygen through it, and I passed out. I tried wearing it several times and finally gave up--

My lungs have sustained some damage through the years, so I assumed this was it--

For years I did use a regular 'painting' mask, and it helped a little, and then I got to where I couldn't get enough air. So I tried the more $$ one for MCS, but it didn't work either.

My daughters both have allergies to pollen and dust; those are a trial, too, aren't they?

Oh yes, it is bad. My son has multiple allergies - both food and environment. He is allergic to wheat even! It is quite a challenge to find tasty bread without wheat...

I was reading up on that mask and it seems that if you start to have a hard time getting air in, you'll need to change the filter. So, it might just be that your sensitivity is so acute that you'll need to change the filter more often like twice a day or something. Hmm... that might make it an expensive endeavor. But, if you just want to use the mask for when going to Church or certain important places, then it might not be too bad.

My son says... "they're ugly!"... and I'm thinking, uhm, we're only worried about the allergies dear, not the fashion statement. LOL!

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  • 1 month later...
Guest Omarion
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I have a condition that makes me very sensitive to fragrances. I would appreciate it if everyone would make an effort not to wear them to church, so that I can come without getting a migraine and respiratory problems....

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  • 4 weeks later...

If I had not gone through a period of 10 years or so of being highly chemically sensitive I'm sure I would not have been nearly as understanding to this issue. I don't know what triggered my sensitivities, but I think it was over exposure to industrial grade chlorine at a dairy farm where we lived and worked that used excessive amounts of chlorine to clean not only the equipment, but also the cow's udders (which was actually not suppose to be done anymore at all) but with having our bare hands in highly chlorinated water each day, as well as breathing in the fumes, I'm sure that didn't help. My husband never became ill, but I became very ill from that time.

I assume another factor was that so much use of industrial grade chlorine also contaminated the well water on the farm which we drank. I had never had problems with chlorine before this, but after moving to that dairy, I began to be unable to tolerate chlorine. Could no longer use bleach in my laundry without becoming terribly ill, with just one load of laundry using one cup of bleach being enough to result in fumes that spread through the house making it seem very much as if the whole house was being fumigated with it. I could not go swimming at the indoor municipal swimming pool without becoming severely ill for days either. So much for white whites and swimming for healthful exercise.

What I did not, know, however, was that this sensitivity ended up extending far beyond what I thought at the time. All I knew at first was that I could no longer use bleach in my laundry or swim in a chlorinated pool, because I felt very much like I was being gassed and poisoned whenever I was exposed to chlorine products, especially in closed areas.

After leaving that dairy and moving on to another, I still had trouble with illness and just being generally unwell for quite some time, but not becoming severely ill nearly so often, and not enough to associate it to anything when I did, and since that dairy used no chlorine, I didn't think it much farther beyond that at first. Periodically, though, I would become extremely ill and the only way I could describe how I felt with the dreadful symptoms I'd be overcome with, was to say it felt as if I was being poisoned. Little did I know...

It took me two years after that to realize what was making me so ill when I'd be overcome. I finally took note that each time I became ill it would be when visiting homes of family or friends. They all lived in different areas and miles apart so I asked myself what they all had in common? Finally it dawned on me that the only thing they all had in common was a municipal water source with chlorinated water.

At that point I began carrying my own water wherever I went (uncontaminated well water) especially when I'd go anywhere I might have to drink city water, and that's when I stopped getting sick like I had been. I was astounded to realize I could not even drink chlorinated water, at all. I grew up drinking it. But, I had become so sensitive that even a small juice glass of water could result in my feeling deathly ill for days.

After I began taking my own water wherever I went I was seldom ill like that anymore, but being so tied to the dairy 7 days a week I was not out in public often either. Plus, due to our isolation I was not attending church at the time either, as with the milking schedule, and being quite far from the nearest branch, I don't know if the small amount of sacramental water would have caused me problems too. At any rate, even then I did not realize the extent of my sensitivities.

Over time, though, after we moved to another dairy where we were much closer to town and I was out in public more I began to realize how hypersensitive I was. Thankfully I discovered that the small amount of sacramental water caused me no problems. But, for example, walking into the garden section of a store with fertilizer products, herbicides, pesticides, etc., would trigger instant headaches, along with nausea, a terrible taste in my mouth and a strong overall feeling of illness that would often continue for hours or sometimes even days after leaving the store, though I'd only walked through and not touched such products. Walking down the cleaning product isles or in sections with various types of solvents would give me the same symptoms, though the terrible fumy taste in my mouth would differ, depending on the type of products I was near.

My mother-in-law sold a well known beauty product line and one of their most popular perfumes, which was also her favorite, was one of the most dreadful at making me very ill, triggering instant headaches, terrible taste of metal in my mouth, severe nausea, rapid pulse, sweating, and feeling as if I was being poisoned. I could walk into her house long after she'd gotten ready and left for work, but I would know, instantly, which perfume she used that morning, as I could smell it as if it was still being sprayed and would become very ill almost immediately even though she'd been gone for hours before I'd arrive. Fortunately she no longer sells that product line and doesn't use that perfume any longer, as even if I no longer became ill from it, I would not want to have to smell it at all. Other perfumes also caused me problems, though that was the worst, but fortunately I never got sick at church.

I had to avoid so much for so long though, (but it did relieve me of my oven cleaning duties which my husband took over :) ) but happily I no longer have much trouble when I have to use or be around chemicals, though I'm still careful and use few. My chlorine sensitivity has finally been overcome to such an extent that I can once again use bleach in my laundry, though I do it very infrequently. I also, once again, live where I have city water, but no longer become ill from drinking it. I also found a few years ago that I was even able to go to the local indoor swimming pool without becoming sick, though I still did not like the smell and I only did that a few times.

The worst thing, though, aside from becoming so very ill itself when my sensitivities were so severe, was the way some people simply did not have patience or compassion about something they did not understand. This was in the '80s & '90s and the attitude was quite often rude and insulting, with some even scoffing, considering me nothing more than a neurotic hypochondriac because I would become ill so easily without any reason they could see or comprehend. This, too, even though I was never outspoken or critical about their use of chemicals and rarely made complaint at all beyond maybe saying I couldn't use a certain cleaning product they might like or want me to use, or mentioning I wasn't feeling well when using something I discovered caused me a problem.

Now I could even use colognes and light perfumes, if I so desired, but because I am so aware of the severity of reactions some can have, I choose not to use them. I am able to use scented soaps, deodorants, lotions, shampoos, detergents and other such products again, but if I had a choice, I would not use them, even though I can now tolerate them and can even enjoy some of the scents now without a problem. But, because I don't have the financial means to be as choosy as I would like, I mostly have to buy what I can afford, so I do very much hope that any of the scented products I may use do not unduly trouble others with such sensitivities, as I know how unmerciful becoming so ill like that can be.

Edited by Forget-Me-Not
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  • 7 months later...
Guest DeborahC

Please forgive me while I vent.

I get the feeling that I annoy you, moderators, and I apologize.

I've felt that from the beginning here.

It is not my intent to annoy anybody.

I see a lot of support going to people with various problems on this board. People with issues anywhere from from masturbation to cheating spouses seem to be treated kindly. I thought it would be ok to talk about my problem. The response was not one that was helpful, honestly. Instead, it felt like I was at the bottom of a chicken pecking order.

Ouch!

I came across this old post doing a search on MCS and LDS Church, and realized I hadn't yet read the responses.

To those who have posted who also have MCS, I hear you and I empathize greatly.

The loneliness in a church that is so community oriented can be quite damaging to the soul.

I understand what it feels like to be left out...

I know how you feel to have to wait in the parking lot to have Sacrament brought to you.

I know what's it like to be standing outside the glass looking into the happy community.

It's a very sad and lonely place.

An update from me: I'm now living with my elderly mother while I wait for my Disability Case to finally go to court in February. After a several-year wait, I'm hopeful, since the judge has agreed to a telephone hearing, which means he at least believes this condition is real.

When I first arrived at this ward, I got up on F&T Sunday and told people of my condition. I asked them if on Sunday morning, as they reached for the perfume or cologne, they would ask themselves which was more important... that they wear scent, or that I and others with this condition are able to attend their meetings without getting sick.

The result was a wonderful outpouring of support!

Not only did many people come up to me and promise they would not longer wear perfume to church but the Bishopric has made special efforts to put me in the overflow area with the doors cracked so I can hear, to give me a calling I can do from home, and to put announcements in the RS bulletin that people please come to meetings fragrance free.

I had several people come up to me and thank me, saying I had said what they wanted to say for years, but were afraid. Two told me of members who no longer try attending. The reactions are just too severe to make it worth it. One day in church can equal the next 3 or 4 in bed, you have to ask yourself if it's worth trying.

Why are people afraid?

Because of responses like the one I got in this forum.

People are threatened when you indicate that something they are doing might be harmful to you.

It's funny, I'm not sure why... ?

Not wearing scent is such a simple thing to ask...

MCS is very real.

I have several very real medical diagnoses; along with a specialist, and an attorney who has the condition himself.

Those of you who do not understand the condition but are willing to listen might find the letter I wrote to my family of interest:

Dear Family,

As most of you know, about seven years ago I was diagnosed with Multiple Chemical Sensitivities (MCS). Over a period of time, I've learned that certain chemicals and scents trigger my overactive immune system, making me very ill. The things that make me very sick include Febreze, perfumes, colognes, scented candles, plug-in and other room fresheners, scented laundry detergent, scented fabric softeners, lotions, sunscreens, make-up, hairspray; basically any scented product. Perfumes used to made out of flowers; now they are made out of chemicals. And because of childhood exposure to farm chemicals added to exposure to chemo on the oncology floor where I worked for years, my body has reached overload and will tolerate no more exposure.

When I sense a reaction coming on, or when I know I'm being exposed to a toxin, I have about 3 minutes to leave the area or I will become very ill. This is why I leave so quickly. What follows is a series of symptoms including the following:

First comes fear because I have learned what's ahead if I can't get out of the area fast enough.

Then comes a nagging headache, which after about 2 hours becomes a full-blown migraine.

My face gets flushed and my cheeks turn very red.

My joints swell up and stiffen, and every movement is painful.

My neck and back joints get hot and painful to the touch. .

The heat is not imagined; it can be measured with a thermometer.

The heat is inflammation my body produces in my joints, believing it to be attacked by an outside "something." That something is the perfume or scented product!

Next comes the brain fog.

I have to ask people the same question 2, 3, sometimes 4 times.

Sometimes I can't remember my own children's birth dates.

With the migraine comes light and noise sensitivity.

Every sound grates on me.

Light is painful – lights in the house must be turned off – curtains must be closed.

These symptoms last anywhere from 2 hours to 4 days.

To try to explain to you how MCS works… Imagine you are walking down a mountain trail and as you walk around a corner, there is a huge rattlesnake in across the path. You JUMP back and scream. Suddenly, a bodily reaction is triggered, called the "fight or flight" response. This response is hard-wired into our brains and represents a genetic wisdom designed to protect us from bodily harm. This response actually corresponds to an area of our brain called the hypothalamus, which—when stimulated—initiates a sequence of nerve cell firing and chemical release that prepares our body for running or fighting.

When our fight or flight response is activated, sequences of nerve cell firing occur and chemicals like adrenaline, noradrenaline and cortisol are released into our bloodstream. These patterns of nerve cell firing and chemical release cause our body to undergo a series of very dramatic changes. Our respiratory rate increases. Blood is shunted away from our digestive tract and directed into our muscles and limbs, which require extra energy and fuel for running and fighting. Our pupils dilate. Our awareness intensifies. Our sight sharpens. Our impulses quicken. Our perception of pain diminishes. Our immune system mobilizes with increased activation. We become prepared—physically and psychologically—for fight or flight. We scan and search our environment, "looking for the enemy."

When our fight or flight system is activated, we tend to perceive everything in our environment as a possible threat to our survival. By its very nature, the fight or flight system bypasses our rational mind—where our more well thought out beliefs exist—and moves us into "attack" mode. This state of alert causes us to perceive almost everything in our world as a possible threat to our survival. Like airport security during a terrorist threat, we are on the look out for every possible danger. We may overreact to the slightest comment. Our fear is exaggerated. Our thinking is distorted. We see everything through the filter of possible danger. We narrow our focus to those things that can harm us. Fear becomes the lens through which we see the world.

Now, back to our walk… after you jump, you realize that the rattlesnake is not a rattlesnake at all, but a stick across the trail.

It doesn’t matter.

It doesn’t matter that it is not dangerous.

The chemical reaction has happened.

And now your body has to fight to work off the chemical flood. In my case, my immune system is over-reactive, and once the reaction begins, it begins a “storm” that literally takes days to run through.

What this means is that a full-blown reaction will take anywhere from 2 hours to 4 days for me to get through. I am sometimes in bed with a migraine for days because of a 10-minute exposure to the wrong substance.

As you can see, this has been emotionally and socially disastrous. It’s just not worth it to be in the same room with someone who is perfumed.

I have had to limit my exposure to people to those who do not wear fragrance at all in my presence, which means I cannot work in a common profession any longer. It also means no church, no parties, no dances, no functions unless they are outdoors.

In frank language, it sucks.

So there it is…

I really don't expect you to go too far out of your way to accommodate my disability. I realize the world is not going to change. However, I'd really appreciate it if when you come to my house, you would try to remember what I've told you about my MCS, and not wear perfume if possible.

And for those who say, “I’ve just got on a little,” or “I put it on this morning,” that is the same as saying to someone with a peanut allergy, “There’s just one peanut in that salad.” My tolerance level is zero. The molecules fill the room by osmosis and one molecule up my nose sets off the storm.

I have a Disability case pending in court – it’s taken several years and hopefully I will have a settlement by the end of January. Then, I’ll be able to afford my own scent-free apartment or house.

In the meantime, if you come here, or if I’m at your home, and I have to leave quickly, please just forgive me and understand it's because I'm having an adverse reaction to something. I really would hate for you to think I'm being rude, because I do love you all and enjoy your company.

Thank you for listening and for understanding,

Debbie

You mention in your post, Pam, that my responses were inappropriate.

I understand.

Our responses often ARE inappropriate when we are in the middle of a reaction.

The brain is operating on that "fight or flight" mode

and all we know is that something is killing us and nobody seems to care.

Note the part about change of personality.

The changes in the brain can be seen on scans,

it's not made up.

I'm sitting at home now, having had to leave church before RS because my face is bright red and burning, my lungs hurt, my eyes are running, my nose is running, I"m light sensitive and I feel a migraine coming on. I tried going into the Mother's Room to listen to Sacrament, but there was a Febreze plug-in permeating the room. I tossed it in the garbage. I told the Bishop and he agreed, it should not be in there.

For those who say, "Wear a mask," I did.

I also often wear gloves, because those with scented lotions on their hands want to shake mine.

I realize they don't understand.

I feel sad as well as angry.

I thought to myself as I often do, getting into my car, "I will never go back to church!" as I left, but I realize that is not the answer. I have flushed out my nose with a neti pot and put on my pajamas, and am now waiting for the brick to fall while I read Lesson One in the D&C manual.

This is my life.

It would be better for me and the others on this thread if people didn't slather on scent.

It's a choice people make.

Perfume/cologne or a brother or sister being able to attend their meetings.

It all boils down to that.

It seems like such a simple request.

I wonder what Christ would do?

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I've discovered that I have a problem with some scents that have a musk base. My throat starts closing up and I can't breathe. I haven't always had this it's just in the last few months. I had to tell someone at work who was sitting next to me to please quit using it.

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Guest DeborahC
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I get the feeling that my post annoys you, moderators, and I apologize.

I've felt that from the beginning here.

Please know, it is not my intent to annoy anybody.

I see a lot of support going to people with various problems on this board. People with issues anywhere from masturbation to cheating spouses seem to be treated kindly. I thought it would be ok to talk about my problem. The response from the mod was not one that was helpful, honestly. Instead, it felt like I was at the bottom of a chicken pecking order.

Ouch!

I came across this old post doing a search on MCS and LDS Church, and realized I hadn't yet read the responses.

To those who have posted who also have MCS, I hear you and I empathize greatly.

The deep feelings of loneliness in a church that is so community oriented can be quite damaging to the soul.

I understand what it feels like to be left out...

I know how you feel to have to wait in the parking lot to have Sacrament brought to you.

I know what it's like for people to look at you like you're a lunatic, like something you have is contagious when you wear a mask to protect yourself from their perfumes.

I know what's it like to be standing outside the glass looking into the happy community, all smiles and laughs, while you, alone, wonder why you can't be in there with the rest of them?

I know what it feels like to WANT to attend your meetings, to have a calling, to be a part of the group, but to be locked out.

It's a very sad and lonely place.

You are in my prayers, as I hope I will be in yours. I know our Heavenly Father loves us and wants us to feel a part of His family. This problem has to do with human failings, not His.

An update from me: I'm now living with my elderly mother while I wait for my Disability Case to finally go to court in February. After a several-year wait, I'm hopeful, since the judge has agreed to a telephone hearing, which means he at least believes this condition is real.

When I first arrived at this ward, I got up on F&T Sunday and told people of my condition. I asked them if on Sunday morning, as they reached for the perfume or cologne, they would ask themselves which was more important... that they wear scent, or that I and others with this condition are able to attend their meetings without getting sick.

The result was a wonderful outpouring of support!

Not only did many people come up to me and promise they would not longer wear perfume to church but the Bishopric has made special efforts to put me in the overflow area with the doors cracked so I can hear, to give me a calling I can do from home, and to put announcements in the RS bulletin that people please come to meetings fragrance free.

I had several people come up to me and thank me, saying I had said what they wanted to say for years, but were afraid. Two told me of members who no longer try attending. The reactions are just too severe to make it worth it. One day in church can equal the next 3 or 4 in bed, you have to ask yourself if it's worth trying.

Why are people afraid?

Because of responses like the one I got in this forum.

People are threatened when you indicate that something they are doing might be harmful to you.

It's funny, I'm not sure why... ?

Not wearing scent is such a simple thing to ask...

MCS is very real.

I have several very real medical diagnoses; along with a very real specialist, and a very real attorney who has the condition himself. I have met people from all walks of life with this condition, and we all have the same story and feelings of defeat.

Those of you who do not understand the condition but are willing to listen might find the letter I wrote to my family enlightening.

It's long, so I will post it next.

You mention in your post, Pam, that my responses were inappropriate.

I understand and you are absolutely correct.

Our responses often ARE inappropriate when we are in the middle of a reaction.

The brain is operating on that "fight or flight" mode

and all we know is that something is killing us and nobody seems to care.

We react.

We yell.

We scream.

We fight

Because if we don't, we will die, and we really believe that down deep in our brains.

Note the part about change of personality.

The changes in the brain can be seen on scans,

it's not made up.

So, frankly, I'm mentally disabled when I'm in the middle of a reaction.

Can you possibly look at my postings in that light, with a kinder heart?

With all the support I've received at my Ward, I'm sitting at home now, having had to leave church before RS because my face is bright red and burning, my lungs hurt, my eyes are running, my nose is running, I"m light sensitive and I feel a migraine coming on. I tried going into the Mother's Room to listen to Sacrament, but there was a Febreze plug-in permeating the room. I tossed it in the garbage. I told the Bishop and he agreed, it should not be in there.

For those who say, "Wear a mask," I did.

I also often wear gloves, because those with scented lotions on their hands want to shake mine.

I realize they don't understand.

I feel sad as well as angry.

I thought to myself as I often do, getting into my car, "I will never go back to church!" as I left, but I realize that is not the answer. I have flushed out my nose with a neti pot and put on my pajamas, and am now waiting for the brick to fall while I read Lesson One in the D&C manual.

This is my life.

It would be better for me and the others on this thread if people didn't slather on scent.

It's a choice people make and it looks like this:

Wear perfume/cologne

Vs.

a brother or sister being able to attend their meetings.

It all boils down to that.

It seems like such a simple request.

I wonder what Christ would do?:confused:

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