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Saturday, September 28, 2013

Are Adults With Food Allergies or People With Gluten Intolerance Disabled?


People ask me if I work and I say yes, all the time. I'm working on my blog, my writing, my artwork or my social networks for at least eight hours per day, usually ten.

I'll admit it. I still live at home. If you have multiple food allergies or health issues and are older than the social standard, you owe no one an apology for this. I'm going to tell you why.


People with extreme food sensitivities develop keen observation skills kind of like a telescope.
Every moment of every day, you are on high alert. Your senses are attuned and over the years your observation skills become so acute, others will see you as either a prime candidate for the CIA or an OCD support group.
You worry about what your next meal will be. You cannot eat in any food court or grab a bite from the deli across the street because everything is cross contaminated. You worry about what people are touching that might contain your allergen and you worry about every surface you have to touch. To do simple things like putting gas in your car, you might need to wear nitrile gloves because your hands are full of cuts and open scabs from itching them so badly the night before, you cried yourself to sleep. With all of your allergies, you might have noticed a contact allergic reaction to paper money due to your multiple environmental and food allergens or coin money because of the nickel content. Maybe you can't even breathe around it because you are that sensitive to the ink it is printed with. If you have a severe or anaphylactic reaction to foods, you have to worry about the air you breathe and what people are eating within a ten foot radius away from you and if it creates crumbs or dust particles that you can breathe in. I used to worry about this while riding the LIRR to work in the city; there were a few times I had to move to a different train car because someone was eating something peanut-based nearby. Or maybe you have a very valid fear of whether they might try to hug or kiss you after eating your allergen to simply say hello. This actually happened to me a few years ago.

One of my flirtatious coworkers saw me walking in from the parking lot and was holding a granola bar he was chomping on before he hugged and kissed me on the cheek. It just happened all too quickly for me to prevent it and I immediately felt my cheek getting itchy and I must have looked crazy as I'm sure my voice was cracking and trembling from nerves.

"Don't take this the wrong way, but are those peanuts?" I asked, pointing at the bar.

"Yeah, why?"

"I can die from them. I need to run inside and wash my face."

"Oh my god, Maya, I'm so sorry!" I could hear him profusely apologizing as I ran straight to the ladies room to hopefully wash off any trace of peanut that was on my cheek.


Another time, I was picking up my Epi-Pen and allergy medications at a nearby popular pharmacy. I'm the next in line and I happen to look up to see the girl who looked in her 20s (pharmacist?) handling medications and stapling possibly my package finishing up the last two inches of a Snickers bar. I kid you not.

The sweet older lady who was ringing up customers was on the phone, so I motioned to her and smiled to let her know I needed her attention asap. She hung up the phone and with a shaky, serious tone I said (rather calmly, might I add, given the severity of this situation) "That girl is eating a peanut butter Snickers bar and is putting together my medications. I have the peanut allergy."

With those five magic words, she swept up the bags, removed the contents and put them in new bags.

So when you contemplate giving someone an explanation to avoid judgement, that story to try to make them understand, that apology...remember the fact that statistically, only 1 per cent of the population has a severe soy allergy and only .5 per cent of us has a deadly peanut allergy. Ninety-nine per cent of the population can realistically adhere to social norms, we can't. Give yourself a break. The person asking you if you work has not walked even a mile in your shoes. That person is asking you a question that cannot relate to you and in turn, should have no relevance whatsoever to how you feel any given moment.

"So what do you do for money?"

I used to run from that question because there were just too many possible answers and its such a long story.

So now I simply say, "I write. I used to be a makeup-artist but now I'm allergic to most makeup," which is usually followed with, "Oh...that sucks!"

This doesn't go into the full story of how someone at the store I last worked at innocently used a Soy Cream by the company, Fresh (made of pure soy protein) on a client using a foundation brush to apply it. I then unknowingly used that foundation brush on one of my clients and had it in my brush belt all day. Throughout the day, my face and hands were itching so badly, I ran to the bathroom several times to wash them and apply whatever creams I hoped wouldn't make it worse. Within an hour or two, my lip was starting to swell and I was getting 'waves' of hives all over my arms and legs and had to tell my manager. While cleaning my brushes at the makeup station I looked down to see Fresh Face Cream then remembered that Soy product line in the back of the store. After some questioning, I found out one of the other managers had used the product on a client and I must have grabbed that brush at some point earlier that day. I setup an allergist appointment that day and had to go on a course of Prednisone for a week and hydroxyzine to get rid of the constant eczema reactions.

I used to love doing makeup, but I realized painting my art on canvas and freelance writing is much safer for me than working as a makeup artist or doing office work somewhere else.

For a few years I also worked as a promotional model doing wine and liquor tastings at various liquor stores and special events. I had to get out of that because schedules were set every week prior to the promotion. Allergic reactions from foods or the environment can happen at any time and there was no way to possibly back out of a promotion within 24 hours. Covering up the soy or environmental reactions that showed up on my face from time to time was a feat in itself; Vaseline and concealer were my best friends. I had to literally peel off one layer of skin around my lips before applying anything because the skin was flaking off so badly. Being self-conscious because of itchy peeling skin around my lips along with trying to appear awake while meeting new clients and promoting high-end wines on a cocktail of 25mg of hydroxyzine and a double-espresso from Starbucks was making me hate my life. I needed something freelance so that I could call out on a moment's notice since my health is so fragile.

I even tried my hand at working at the modeling agency's office for a few weeks. This was fine until they set me up to work in the head honcho's office with two other girls and I saw a halfway-emptied peanut butter jar sitting on the table next to me. As long as nobody opened it, I thought I would be okay, but now my mind raced with thoughts about the computer's keyboard I was typing on; was it contaminated? Forget concentrating on my work. That stupid jar kept inadvertently grabbing my attention like a black widow spider sitting by the side of my arm, threatening me and literally made me wonder how I ever ended up in these situations in the first place.

I had mandatory makeup trainings and certifications in Manhattan for several days where they served snacks throughout the programs. One day I went for a training for one particular high-end cosmetics line being sold in our store. During our fifteen minute break, I went to the bathroom only to come back to a room permeated with the smell of peanuts. My anxiety went through the roof and I went to the snack and coffee tables to see a large platter of a sticky-looking, spiced up pile of peanuts sitting there and my heart felt like it dropped to my stomach. I ran over to the girl next to me whom I had befriended during the program who had just sat down with her plate of my lethal conglomerate Kryptonite, "Can you do me a huge favor and let me know if those are peanuts?"

She looked at me a little funny and tasted and said, "Yes, I'm pretty sure they are."

I quickly explained my peanut allergy to her and she quickly threw it away and grabbed fruit instead, which I was thankful for. I know now I should have just notified my trainers and left the room for at least an hour, but I reasoned with myself that since the peanut snack looked shiny and sticky, the dust particles probably wouldn't affect me. Thousands of thoughts flooded my brain as the presentation restarted and the smell of peanuts practically suffocated me. In that moment, the speaker was invisible to me. All I could do in that moment was concentrate on my breathing and not for a zen-like yoga reason but to observe if I was having asthma from the peanuts..to see if my breathing was being affected. As the trainer kept talking, something kept telling me to leave but I was afraid of them thinking I was crazy and ruining the reputation of my store whom I was chosen to represent. I had just gone to the bathroom...if I left again, they might notice. They might think I don't want to be here...that I don't take their company seriously. They might think I'm crazy and not take my allergy seriously. With every thought I slumped lower in my chair as if doing that would make me disappear. Can they tell that I'm literally having a minor panic attack in this chair? My thought process paused on my hydroxyzine, praying it was in my bag. It wasn't. (I knew I had an Epi-Pen but since I had never used it before, the thought of having to was something I literally just tossed out of my mind. As some of you know, this fear has since changed due to more than one near-death experience.)

I frantically unzipped my smaller handbag to rummage through the makeup and clutter to find two Benadryl capsules inside a piece of pillcard. I took only one since I knew two would render me useless for the rest of the training and once again I didn't want to look extremely tired or drugged up.

I learned the hard way that I had to have my store manager email the powers that be about my severe allergy so that no peanuts or tree-nuts were served. Even when she did this, they served mini candies and chocolate bars, including peanut Snickers! Observation equals survival, because had I not seen one of the trainers putting them into baskets in the middle of each table, I would not have been able to let her know I have an extreme peanut allergy that will cause hives and asthma (and possibly worse) just from inhalation in a closed space.

Almost every job I've held has a food allergy tale of extreme anxiety, suffering and feeling completely alone. I've gone home numerous times for severe reactions from makeup or contact dermatitis to soy derivatives, nut derivatives, nickel, dimethicone, lanolin and many other silicone derivatives.

The depression and anxiety faced by those with severe food allergies, celiac disease or severe gluten intolerance is not normal and should not be treated as such. My personal opinion is that many people who are in similar boats and situations as me probably deal with similar mental anguish and pain. I have been using steroid creams and topical medications since I was a child and I am currently in my early 30s. In my teens, my family used to tell me to cut down my use of steroid creams because it will make me crazy. If my constantly itchy skin didn't do it first, I thought. There is a good chance that all the steroids I've been on throughout my life have worsened my anxiety, depression and symptoms of personality disorders such as Borderline Personality Disorder. I believe that my food and environmental sensitivities also make me emotionally sensitive. I'm not afraid to admit it anymore because once again, only I can know what I go through on a daily basis and I think anyone who traveled the roads I did would have faced similar issues.

So right now, I cannot survive without my family and I depend on them. I write and I create portrait art because it makes me happy. Of course I hope one day I will have financial independence...but until then, I work. So the answer to the title of this blog post? This is something only you can know and answer for yourself.  With my severe gluten intolerance and my severe allergies, contact dermatitis, eczema, depression, anxiety and all that I have to go through to survive and live comfortably, I consider myself so.
 
People can judge me all they want to. I've noticed many people will, no matter what you do. The truth of the matter is, if you are happy doing whatever you're doing, keep doing it. Living with chronic illness of any kind is not easy; you are not like them and they are not like you. Don't let anybody stop you or make you feel bad for getting the help you need while you try to do your best for yourself.

4 comments:

  1. You should check out "The Highly Sensitive Individual." Apparently people who are more sensitive are more likely to have food sensitivities and allergies. You come out of the womb with your immune system on alert. Fun, right? Thanks for posting this...it's something I needed to hear today.

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  2. Thanks for this post. My 3 year old has multiple food allergies, 17, with 5 anaphylactic and he is gluten intolerant. His eczema is awful, all day he a scratches. My heart breaks. I'm glad you are managing ok. It really is a 24 hour illness, but you just have to take it one day at a time. I'm bookmarking your site! Thanks again

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  3. Anonymous,

    I'll definitely have to check out that book! Upon reading excerpts from it on Amazon, yes...it sounds very much like me. I feel things so much so I can usually sense the emotions of those I'm speaking to. It is, as some have noted in the reviews for that book, a blessing and a curse. It definitely helps, though when it comes to seeing things most people are not aware of in my environment. It helps me to stay safe...thank you for reading and I'm glad you got something out of it. =)


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  4. Anonymous,

    I am so sorry he has to deal with that...it sounds so much like me when I was that age. My mom was completely alone because back then, it was such a rare thing that a doc she brought me to actually scratch tested me with peanuts when she had adamantly told him not to. She and you would have a lot to talk about.

    Thank you, it really is not easy...some days are better than others, but that's exactly right. One day at a time. I really hope he finds relief somehow...maybe through a University hospital where they do the peanut desensitizing? Thank you for reading and I will pray for him until then.

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