What It's Like to Be 'Allergic to Life'
As a diagnosed adult autist, I tend to live a private life. As such, I have chosen not to share this story before, but recent events have made it seem that it would be a good idea for me to do so.
You see, I have another condition as well — one that while rare, is not unheard of and is actually becoming more and more common in our current culture. It was in fact covered by Discover magazine and in quite a few medical journals.
For me, the beginnings were mundane enough.
One day, I just could no longer put cheese on my burgers.
Cheese made me feel awful. Sweaty, hot, nervous, and itchy.
Sometimes it made my breath short and my throat itchy.
So I just quit asking for cheese on anything.
I missed it, sure, but the cost was not worth it.
But it got worse.
One day, I had to omit the bun as well as the cheese, and then not too long after the burger as well.
And then the french fries.
And the drinks.
And then the side salads.
And then suddenly I was just no longer eating at all.
I don’t mean I went on a diet.
I mean I quit eating food. All food. Any food.
And that’s how it began.
Somehow, it just never occurred to me at first to go see a doctor.
I kept thinking that one day, I’d just get hungry.
That I’d just get over it.
Actually, I spent three weeks without food.
I lost 56 pounds, and I almost died.
The weird part of this adventure was that no general practice doctor seemed able to help me. I did not receive any treatment until I passed out – at 96 pounds – due to heart arrhythmia caused by a severe potassium deficiency, and woke up in an ER. Not that I did not eventually go and see doctors. I did. Bunches of them. They all just shook their heads and looked at me funny. They said my symptoms matched no known disease. I heard a lot of “Just eat something.” I got a lot of psychological referrals. And no one would admit me to a hospital or clear me for an IV. I was drinking plenty of water. I was urinating regularly. That I had wholly quit pooping did not seem to bother anyone.
Until, finally, one doctor suggested allergy tests but said he could not get them until three months later…
Now after a year and a half of testing – with more testing to come, I know I have idiopathic anaphylaxis, as well as multiple chemical sensitivity syndrome and environmental illness. I am still being tested for hormonal changes, mastocytosis, and mast cell activation disorder.
In English? I am basically allergic to 150+ foods and most manmade chemicals. I go through EpiPens the way teens go through fads. And given the $600 price tag of these life-saving devices, this is no joke. That means money worries are now a real and present part of my disease, especially as I am uninsured. I borrow a lot of money and still have trouble buying food and medications. The food costs are a big deal, as I have 15 foods I can eat and they have to be organic and I have to make them from scratch. After, I clean the kitchen and microwave. I can’t eat processed or pre-prepared foods at all as they frequently contain things that could kill me.
I also can’t wear rayon, drink from plastic bottles – and all I can drink is water. Even now. My house is full of bamboo, real wood (unpainted), steel and glass. I have my own glass plate, bowl, and mug. I have one surgical steel knife, fork and spoon. I can’t go to movies, restaurants, bars, or coffee shops. I can’t go anywhere where people may be eating or drinking, smoking, vaping, or wearing large amounts of makeup, lotion, or cologne. I read labels carefully, I go to farmer’s market’s, I keep track of food labeling laws (which totally suck in the U.S. I’ve eaten fraudulent food several times and ended up in the ER.) I can only eaten certain brands and thus have to mail-order my food or drive 50 miles to a specialty shop. My food budget is probably the size of your car or house payments. Healthy food is not cheap.
I can’t shake your hand or touch you. I can’t even touch my partner unless he has had a long shower with no soap or shampoo.
And don’t ask me how expensive it is to change over from everyday items to allergy-safe ones. Also, “hypoallergenic” means “low allergy,” not “allergy-free.” I am allergic to many hypoallergenic products.
I’ve learned to cook from scratch, and I’ve learned a fair amount of basic furniture building – unfinished wood products actually tend to cost more then finished ones for whatever reason.
Any new item I buy – food, shirts, chairs – is a role of the dice, heads I can use it, tails, I wake up in an ER, or maybe don’t wake up at all. That said, let’s get down to details.
Here is my average day. I get up and peel back my 100% cotton blankets. I put on my 100% cotton clothes. I start with cotton briefs and then my long pants. (I can’t wear shorts because I cannot risk airborne pollutants such as smoke, pesticide or other air irritants touching my skin, as that can start a reaction.)
Next I put on a cotton-lined undershirt, cotton or linen shirt and socks. I put on cotton boat shoes or my leather boots. I can’t wear sandals or flip flops as I might step in something or brush a grass patch or lawn that has been recently sprayed with pesticide or fertilizers. I strap on my med alert bracelet and my latest two EpiPens.
I sit down at my glass and metal computer desk on my leather chair – first wiping the surfaces with a clean microfiber cloth.
I check my various social media, my mail and my calendar. Today I have reminders for visits to Great Smokies Medical Center (allergist) and MUSC-Charleston (neurologist).
I also have reminders to go by Trader Joe’s to buy a few things and to mail-order more of my safe food ingredients. I am lucky to live in a place with whole food, organic, and farmer’s market options, but I still have to mail-order some items to get them 100% pure. (Why do Americans insist on adding sugar to peas? And basically everything else?)
I go in the kitchen and dampen a sponge and wipe everything down.
I live with two other guys, neither of whom have allergies. I wash my hands for three minutes under hot water, scrubbing the fingers, palms, and under the nails the way my doctor taught me to.
Today’s meal? Salmon, peas, and white rice. (I am allergic to brown, oddly enough.) I put 100% pure organic coconut oil in my cast iron skillet and warm it up. To this, I add one organic Chilean salmon plank (I am allergic to sockeye) and turn it up to six. I put white rice and coconut oil in a stainless steel pot of purified water to boil. (Our city’s tap is chloraminated – no, that is not a misspelling, it means they add chlorine and ammonia to the water to kill germs and parasites. I learned that after being rushed to the ER after having a glass of water). I do the same with the peas.
I cook the food and then wake up my partner. I am not allowed to eat alone in case of accidental contamination. My allergies are that bad. I need to have someone nearby who can use my EpiPens in case I react too quickly to do so myself. (Which happens.) We eat in the living room. I sit in my special chair. No covering, easy-to-clean vinyl and put out my special coffee table, unstained wood.
My partner and I eat and talk, and since I was lucky again today, the meal is uneventful. When we finish, I take my dishes to my designated sink and wash them with a cotton washcloth and hot water and then dry them and put them in my special cabinet. I put away my table after wiping it down and go to the bathroom to water brush my teeth with coconut oil and salt and then rinse with hot water. I can’t use toothpaste or fluoride or mouthwash so I brush a lot. Then I go check my digital chore list.
I have several chores today. I have to clean out and defrost my special mini-fridge. I need to do laundry. Since I can only wear my clothes for one day, I have to do a lot of laundry. I wash it in hot water twice and then dry it. I need to water the garden. I can do this if I wear my gloves. I need to check the air quality. If someone is barbecuing or having a trash fire, I’ll need to wear my mask as well. I like being outside. I usually do not need a mask. I have no natural allergies except to flowers – we have none – or foods. So I can hike, swim in a lake, garden, or go to the park without a mask. Usually. I need to walk the cat. She is harness-trained and it’s her only out door time. If the temperature is above 80, I put on my water belt. I can’t wear shorts, tanks, flip-flop, etc. I’ll be dripping sweat before we are done. I need to stay hydrated.
I do my outdoor chores and come in to take a shower. I can’t wear bug spray, suntan lotion, or deodorant, so it’s a given that I stink. I’ve quit going out on really hot days because people stare at me and tell me how bad I smell. You’d stare as well. Long pants, long sleeve shirt, socks, shoes, usually a hat and it’s 90+ during the summers since I live in the south. After my shower, I sit around in my boxers reading my Kindle. I had to give away a 25 year collection of books because I was allergic to them – mold, dust, inked covers, acid treated pages, and so on. I have a few books again now as my allergies have slowly begun to fade where paper is concerned, but most of my collection is still almost entirely on my computer or Kindle. I’ll write for an hour or two on a good day. On bad ones I surf the internet or watch a movie. I’ll email or chat with my online friends and apologize again to the flesh and blood ones.
(No, I can’t come to your wedding, the hospital, to meet your kid or puppy, to have coffee, to see your play. Yes, I am still sick. No, it is not personal.)
A pop-up reminder tells me I have to see my psychiatrist tomorrow. I need to cook extra food and put it in my special cooler in the fridge for tomorrow. I’ll need my mask, gloves, and extra clean clothes. I’ll need to set my alarm for an early shower and shave (hot water, sharp razor -surgical steel). I’ll carry a knapsack with extra clothes as well as the food in case of spills or other exposures.
I don’t want to go. It means risking my partner’s car, her office, and then sitting in the car while my partner eats on the way home. It means bathroom hunting and avoiding people who bath in their cologne or use 11-scented products in the shower. I hate going out. We live in a chemically enhanced culture, and despite the health risks, good luck getting people to give up the makeup or the deodorant or the hair gels. Or in getting people to not eat everywhere. One of the first things I noticed getting out of the hospital was that Americans do eat or drink almost all the time. Walk through the park on a sunny day and count the coffees, sodas, popcorns, ice creams, snack bars, nut mixes, or what have you. Drive down Main Street, anywhere, and watch the coffee drinkers on the stoops or out window shopping. Note the people at outdoor tables with their drinks and food. Even in grocery stores or public shops, carts come with coffee holders and free samples abound. And all of these people are also touching everything. My life is a continual minefield of little traps. Who touched this last? How can I open this door without touching the handle? Can I pee in here or did someone spray an air freshener? Was this food cooked on a safe grill? Did he just touch my food? Is there anything on this chair? Did anyone repaint recently? Will she come to my house wearing make up? Will the repairman use WD-40 even though he was told he absolutely could not do that? I can’t sit on a park bench or touch a shop door handle or shopping cart with any assurance of safety. I am continually washing my hands. I even carry spare water for this purpose.
And do I get weird looks? Man, do I ever.
And angry and disdainful ones as well.
I am eternally explaining about my allergies, and people are still offended. They take it personally. They just don’t get it. And yes, I have to go to therapy. I do have mild post-traumatic stress disorder (PTSD) and anxiety issues. I do struggle with depression. I wake up every morning knowing I could die that day because I was careless or because someone else did not actually care that there are people like me in the world. And when you add my autism to the mix, meltdowns are common, and my life partner has to be prepared to help me deal with them as they come, which adds a layer of extra stress to his life.
But I digress, back to my evening routines. I usually wrap up my evening chores by around 8 and then do 15 minutes of exercise with my steel weights (un-oiled) to try to lose a bit of the weight I gained now that I don’t go to sword fighting, jujitsu, go to the gym, or any other fitness space. (I can’t risk being indoors in those spaces or worse having other people touch me.) Then I shower again before bed. (I shower a lot.) Tomorrow this cycle will repeat, and if I am lucky, I won’t need the EpiPens.
And that is my life. Every second of every minute of every hour of every day of every week, month and year is spent being careful, watching and washing my hands, apologizing to people lucky enough to be healthy and alternately wishing I was healthy or wishing I was dead. So now you know.
So when you see me and the many other people like me out in the world, how about being a bit nicer, eh? Not all conditions are visible; many are not (autism, allergies, diabetes, deafness, etc., etc.), and it would not hurt you to realize that and offer us a little patience and consideration.
Thank you for reading this, and bon fortune.
Image via Thinkstock.