Coexistence

The list of offensive things people say to patients with chronic illness is seemingly endless. Even after all this time, it still amazes me what people feel entitled to say about my health. It also still amazes me how much it can hurt.

My diseases permeate and affect every single part of my body and my life. That’s not because I’m “obsessed” or “caught up in it” or “looking for an excuse.” It’s because my body makes too many defective mast cells, defective collagen, antibodies to my thyroid, nuclei of my cells and joints, not enough cortisol, and a cardiovascular system that is pathologically incapable of maintaining stable blood pressure and heart rate. I work hard to live around the hindrance of multiple rare diseases, and I do, to a certain extent. But that’s not the same as “moving on” or “getting past it.” It’s like eventually learning to live with a roommate that leaves their hair in the drain, is always late with rent and sometimes poisons your food.

I am actively engaged in a power struggle with my body pretty much constantly. I take medication about every thirty minutes while I’m awake and continuously overnight. I plan every part of my day, including when I have to go to the bathroom. I identify triggers I may encounter and try to minimize exposure.

One of the most important ways I reduce exposure to triggers is by communicating them to the people around me. In situations where people know me and/or I am reliant upon them to care for me, I try to educate as much as possible. Otherwise, I just give my elevator speech: “I have a rare blood disorder that causes me to have severe allergic reactions to things I’m actually not allergic to. I have hundreds of these false allergies.” Sometimes I do it to avoid confusion, sometimes because I don’t feel like talking about my health and sometimes because I know that what I say won’t change their behavior.

I rarely eat in restaurants and when I do, it is because I have talked to the chef (usually ahead of time) and identified a safe meal for me. Even when I have done this, there can be misunderstandings that require my food to be sent back and made again. Even outside of restaurants, I prefer not to eat food that wasn’t prepared by me or someone I trust. There is too much risk.

People often don’t understand how easy it is to unintentionally contaminate my food. They sometimes think the amount of an ingredient is too small to elicit a reaction and therefore not worth the trouble to make it without. And then there is the biggest risk of all: the people who want to “test” me and see if I’m “really allergic.” They think it’s too much of a strain to just accept that if I say I need something prepared a certain way that it is necessary.

Or worse, they believe we can be sickened in the way we say, but feel absolved of social responsibility.  That society should not have to change to protect the few and neither should they.

When I am trying to explain the sort of things people like me experience regularly, I ask them to first think about pregnancy. Pregnant women observe a number of restrictions to keep themselves and their babies safe, such as avoidance of certain foods and medications, regular medical care, and avoidance of particular physical activities.

You know what I almost never hear people say to pregnant women?

“Why do you keep talking about being pregnant? Can’t you focus on something else?”

“It’s not healthy to talk about being pregnant all the time.”

“It’s probably not that dangerous, you should just try it.”

“I have never heard of that, I know lots of pregnant women and they say doing [triggering thing] is fine.”

“You’re not pregnant, you don’t even look pregnant.”

“You should give up your seat to that person, you don’t look like you need it to me.”

“Have you ever tried just not being pregnant?”

“Pregnancy is a mindset.”

“If I [make it without triggering ingredient], I’m going to have to cook your meal separately. Is it really worth it?”

“It’s only a little alcohol.”

“Why do you go to the doctor all the time?”

“Why would you go to the hospital for a tiny thing like that?”

“Well, it’s obviously your fault that you’re having pregnancy complications because you did [unrelated thing].”

“Your pregnancy is too much of a pain in the ass of us.”

“You can’t expect us to change things just to make it safe for you.”

“You would probably feel a lot better if you would just lose some weight.”

“You don’t need to listen what your doctor says, they are shills for Big Pharma. My cousin took [current popular panacea] and they did way better on it.”

So why is it okay to say things like this to people like me who are sick? If you replace “pregnant/pregnancy” with “chronically ill/chronic illness,” every single one of these things has been said to me many times over.

I’m a pretty brassy woman. It is not easy to embarrass me or make me uncomfortable. Except in this way. Requiring the assistance of people I don’t know well and don’t trust is inherently disarming and leaves me vulnerable. When I have to tell someone that I can’t eat that/go there/commit time to something worthwhile, I have to steel myself. I need to be safe but I also need to feel like I’m not a burden and an outsider.

I don’t ask most people to help keep me safe from every trigger I have, I just ask them to keep me safe from the worst ones. Once you start listing things, people either assume you are being dramatic or lying; or they realize you aren’t, but just don’t care. They might care that you’re sick but not enough to alter their routine in small ways.

We are not inventing our triggers to make your life more difficult. We are not pretending to be sick to get “special treatment” and are not just being “picky.” We are not sick because we don’t want to get better. We are struggling to make it through every day without triggering a reaction that could hospitalize or kill us.

Last night, my mastsister Addie was exposed to something that many people refuse to believe can actually trigger anaphylaxis.  She was not even in the same room as the trigger.  She need two doses of epinephrine, multiple doses of IV Benadryl, IV SoluMedrol and fluids.  She was sick for hours and is recovering today.

Addie asks people to help keep her safe

Please take our triggers seriously.  Please take our disease seriously.  People die from anaphylaxis every year.  In some cases, it could have been avoided if their allergies were taken seriously.

We are not telling you that the world needs to accommodate us in every way. We are asking you to help us live in it.

Fragrance allergy

Public understanding of allergy pathology is often inaccurate and can create dangerous misunderstandings. The most common is that you must ingest a protein in order to have an anaphylactic reaction. Another is that inhalation or skin contact cannot cause severe reactions.

Both of these are inaccurate, especially, but not only, for people with mast cell disease. People without mast cell disease have severe reactions to IV contrast without having allergy antibodies to the protein (Singh, 2008). Inhalation can cause anaphylaxis. There are even cases of patients who can tolerate ingestion of a food but not inhalation, such as seen in Baker’s asthma, the second highest cause of occupational asthma in the UK (Ramirez, 2009). While ingestion of protein is the most common mechanism for severe allergic reactions, it is certainly not the only one.

Fragrance allergy is a growing problem worldwide. Fragrance is now one of the top five allergens in North American and European countries and can cause skin, eye and respiratory problems (Jansson, 2001). At least 100 chemicals commonly used in fragrances can cause contact allergies when applied to skin, even passively (Johansen, 2003). European Commission’s Scientific Committee on Cosmetic Products and Non-Food Products’ 1999 list of allergenic substances contained 24 chemicals and 2 botanical preparations, all used as scents (European Parliament and Council Directive 2003/15/EC, 2003).

Though the exact mechanism is not clear, perfume is known to cause asthma and other respiratory problems (Elberling J, 2009). A Dutch study found that isoeugenol, a common component of fragrances, can cause increased proliferation of cells in respiratory tract lymph nodes when inhaled (Ezendam J, 2007). However, more research is needed in this area.

A significant portion of the population also reports adverse reactions to scented products in general, even when worn by others. Products like scent lotions, perfumes, soaps and air fresheners are all cited as problematic. A 2009 paper reported on the results of two surveys of over 1000 people. 30.5% of the general population found scented products on other people to be irritating. 19% reported health effects from air fresheners, and 10.9% reported the venting of scented laundry products as causing symptoms. Percentages were higher among asthma patients and those with chemical sensitivity (Caress SM, 2009).

Symptoms reported from exposure to fragrances on others includes: headaches, chest tightness, wheezing, diarrhea, vomiting, mucosal irritation, reduced pulmonary function, asthma, asthmatic exacerbation, rhinitis, irritation of the airway, nose and mouth, and dermatitis (Caress SM, 2009).

Many of you are aware of the recent dispute over whether or not essential oils can be dangerous. They can. Even in the absence of known chemical triggers, the oils themselves can be triggering to many. As an example, clove oil, which has a large eugenol component, has been tied to severe allergic reactions (A.O. Nwaopara, 2008). Oils of citrus fruits are known to liberate histamine and make it more available to cause mast cell symptoms (Novak, 2007). Furthermore, while the reaction profile of each mast cell patient is unique, the hallmark of mast cell disease is anaphylactic reactions to seemingly harmless substances. Mast cell patients are increasingly being viewed as “canaries in the coal mine” for their ability to detect minute quantities of offensive components. While mastocytosis is rare, affecting about 0.3-13/100000 patients, some level of mast cell activation syndrome (MCAS) is thought to affect a much larger percentage of the population, in the neighborhood of 5% (Molderings, 2014).

Fragrances, from essential oil or otherwise, can cause contact allergies, headaches and respiratory symptoms. In mast cell patients, scents can cause severe full body reactions that are potentially life threatening or fatal.

Sorry not sorry – Why I’m calling out singer Natalie Grant

Saturday afternoon, a masto friend reached out to me.  She was upset about a Facebook post by a prominent Christian singer, Natalie Grant.  Ms. Grant posted the following to her Facebook wall on Saturday:
“Such a sweet time in Minneapolis at Women of Faith.  But now it’s on to LAX to continue filming the next episode of It Takes a Church.  And why yes, that is a battery operated essential oil diffuser that I’m using in my airplane seat.  Rocking the thieves oil and keeping the germs away.  And it’s helping the plane to smell much better #sorrynotsorry”
I groaned when I read it.  I actually groaned out loud.  I opened the thread to find mast cell patients commenting that oil diffusers can be dangerous for people like us, that they could trigger anaphylaxis. Grant’s fans argued that these people were just looking for something to complain about, that oils could never harm anyone, that you have to ingest a protein to have anaphylaxis.  The general spirit of their responses was that mast cell patients were just being oversensitive. 
That’s exactly right – but not the way that they mean.  Our bodies experience severe reactions to pretty much anything – and those reactions aren’t in our heads.  The fact that so many people commented that it was impossible for an oil diffuser to present a real health risk to others represents a serious danger to people like myself.  That is why the mast cell community found this so upsetting.
So let’s discuss why this is dangerous for people with mast cell disease.
Mast cell diseases are a group of disorders in which your body either makes too many mast cells, mast cells do not function correctly, or both.  Mast cells are the cells that are responsible for allergic reactions.  For normal people to have an allergic reaction, their body has to make a molecule called IgE that remembers it is allergic to something.  So people with peanut allergies have peanut IgE, and when they eat peanuts, the peanut IgE tells the mast cells to have an allergic reaction. 
People with mast cell disease pretty much skip this step entirely.  We have severe allergic reactions to things we are not actually allergic to.  This includes lots of foods, materials, environmental factors and others.  For some people with mast cell disease, these reactions include unpleasant symptoms that can be managed at home, like nausea/vomiting, skin reactions, headaches.  But some of us have severe, life threatening anaphylactic reactions based upon even very casual exposure to these substances.  These reactions require use of epinephrine (Epipens), IV antihistamines and steroids, and monitoring at the hospital to ensure that we survive.  People with severe mast cell disease can have several of these episodes in a year.  (I had three in 48 hours in May.)
To be clear: anaphylaxis can be fatal.  Mast cell patients are more likely to experience anaphylaxis and more likely to have severe reactions.  Our best protection is to avoid triggers and medicate appropriately, but this isn’t always possible.  Due to the rare and unusual nature of our diseases, there are few specialists worldwide so the vast majority of patients must fly to see them.  Hiding at home all the time with a mask on is both not practical and not an acceptable way to live. 
Every day, people with mast cell disease seek to minimize the damage to their bodies by avoiding triggers as much as possible.  In enclosed indoor spaces, this can be particularly difficult.  Once triggered, the only option is to medicate and end exposure to the trigger.  When flying, this is obviously impossible. 
While mast cell diseases are rare, fragrance sensitivities and asthma are not.  The CDC has stated that some risks of exposure to scents include asthma attacks, allergic reactions, headaches, migraines, sore throats, coughing, eye irritation, and other medical symptoms.  Asthma attacks can be triggered by fragrances in 72% of asthma patients.  Patients with multiple chemical sensitivity often have severe symptoms similar to those mast cell patients experience.  The fact that workplaces are gradually transitioning to be fragrance free environments is indicative of scent exposures negatively impacting the quality of life for many people. 
In an age of increasing allergies and allergic-type reactions, I find that people like me are often at odds with people who feel their personal liberties should not be curtailed.  Many people see this stand against the use of a personal diffuser as an attempt to impose the will of a suffering minority onto the population at large.  They are entitled to feel however they feel.  But as a mast cell patient, this is about allowing us to move as safely through the world as possible.  Is it worth feeling “infringed upon” to not use an oil diffuser in an airplane when it could kill someone?  Literally kill them?
Natalie Grant put up a follow up to the original post the next day.  While it initially looked promising, I was very disappointed.  It includes such gems as, “I am not here to argue about whether pure Young Living essential oils specifically, can harm those with this disease.” And, “I have a niece that is so allergic to peanuts, she can be in the front row of a plane and the person in the back row can open a bag of peanuts and she can go in to anaphylaxis.  However, EVERY TIME she flies, she has to inform the airline and flight attendents of her life-threatening condition.  May I make a suggestion to those who are suffering: be vigilant with airline employees.  DO not allow the plan to take off until the passengers have been informed there is someone on board who has a specific life threatening disease, so please do not use perfumes, lotions, oils, etc while on board the plane today.  No one will be a better advocate than YOU.”
This statement sums up exactly how much Natalie Grant is missing the point.  If I stood up in front of a plane and told people not to use anything scented, they would snicker and still use them because nobody believes we can actually die from a reaction to a scent.  When mast cell patients spoke up to point out that her use of an oil diffuser could be dangerous to us, we were mocked and shouted down.  We are advocating for ourselves.  The problem is that Natalie Grant, and her fans, just aren’t listening. 
And mast cell disease being dismissed publicly by someone with her sphere of influence?  Well, I’d venture my world is even a little bit more dangerous now than it was before Saturday.  So I’m calling her out.  #sorrynotsorry
A succinct presentation that sums up scent related health issues for the general public (along with list of references for above statistics) can be found here: http://www.slideshare.net/J_A_Miller/fragrance-sensitivity-awareness