Anyone with MCS, or family/friends/caregivers of someone with MCS...
Do you need a book that spells out exactly the sorts of steps people need to take in order to safely (or safely-ish) be in your presence?
I ask because for me it was one of the most isolating factors of this illness, affecting everything from social life to medical options to caregiving solutions. When I was most severe my mom and I tried to communicate all the things people needed to avoid before seeing me, to little avail. So many people would insist they weren't wearing "any of that stuff" even as it was closing my airways, and so obvious my mom could smell it too. Or they would be like "just for you, I didn't wear perfume today!" and a simple hug to them required extensive decontamination protocols afterwards.
It had me thinking that I was too severe, that I was asking too much of people.
But now that's changed.
I've been working at a place that successfully caters to quite ill MCS sufferers, but also allows non-sensitive folks to stay there as well, provided they follow the strict rules about fragrances and toxic products. Regular folks often have a bit of difficulty adapting, and so things need to be spelled out to them, e.g. they must begin avoiding fragrances 2 weeks in advance of staying there.
If someone begins using a problematic product, we recognize it right away, identify the offending product, and bag it up, with a note that the guest unfortunately may (EDIT: I meant may NOT!) use it until after they leave.
If someone's clothes were dry cleaned, they are bagged up and left in the garage to take with them when they go. Sometimes guests have to buy or borrow clothes, because they're too contaminated to even risk washing them in our washer!
What surprised me is it actually works.
Guests I had to always wear my gas mask around, were suddenly okay to be around. Because they were educated on what they had to do. Many come assuming they are fragrance-free, and leave with a much better understanding of what that actually means.
And it's got me thinking - what if this knowledge was out there? Like, if MCS sufferers could refer someone to a short book that spelled it all out, rather than attempting to explain everything from scratch?
Before I attempt such a feat, I want to make sure I'm not the only one who would read it. What do you think? Would this be useful to you? If not, what would be more helpful?
(If anyone is uncomfortable replying publically, please feel free to PM me, or if you'd rather do email I can share that by PM too. )
Do you need a book that spells out exactly the sorts of steps people need to take in order to safely (or safely-ish) be in your presence?
I ask because for me it was one of the most isolating factors of this illness, affecting everything from social life to medical options to caregiving solutions. When I was most severe my mom and I tried to communicate all the things people needed to avoid before seeing me, to little avail. So many people would insist they weren't wearing "any of that stuff" even as it was closing my airways, and so obvious my mom could smell it too. Or they would be like "just for you, I didn't wear perfume today!" and a simple hug to them required extensive decontamination protocols afterwards.
It had me thinking that I was too severe, that I was asking too much of people.
But now that's changed.
I've been working at a place that successfully caters to quite ill MCS sufferers, but also allows non-sensitive folks to stay there as well, provided they follow the strict rules about fragrances and toxic products. Regular folks often have a bit of difficulty adapting, and so things need to be spelled out to them, e.g. they must begin avoiding fragrances 2 weeks in advance of staying there.
If someone begins using a problematic product, we recognize it right away, identify the offending product, and bag it up, with a note that the guest unfortunately may (EDIT: I meant may NOT!) use it until after they leave.
If someone's clothes were dry cleaned, they are bagged up and left in the garage to take with them when they go. Sometimes guests have to buy or borrow clothes, because they're too contaminated to even risk washing them in our washer!
What surprised me is it actually works.
Guests I had to always wear my gas mask around, were suddenly okay to be around. Because they were educated on what they had to do. Many come assuming they are fragrance-free, and leave with a much better understanding of what that actually means.
And it's got me thinking - what if this knowledge was out there? Like, if MCS sufferers could refer someone to a short book that spelled it all out, rather than attempting to explain everything from scratch?
Before I attempt such a feat, I want to make sure I'm not the only one who would read it. What do you think? Would this be useful to you? If not, what would be more helpful?
(If anyone is uncomfortable replying publically, please feel free to PM me, or if you'd rather do email I can share that by PM too. )
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