The process of managing multiple life threatening allergies starts off with a progression of stages that are very similar to the stages of grief if you will:
Denial - Parents are in total shock, especially if they have never been exposed to allergies or anaphylaxis previously. They don't believe this is happening to their child. They may seek a second opinion for fear that the doctor is inexperienced or made a mistake. Some will even continue to feed their child products containing the allergen in the hopes that it will "cure" the allergy.
Anger - After the initial shock wears off, parents start looking for someone to blame. Upset by everything and everyone, they start looking into their family history to deflect blame (e.g. this didn't come from MY side of the family). They do not understand why this happened to their child and sometimes feel envy towards parents with non allergic kids. That coupled with their frustration that there is no cure for allergies often creates resentment towards parents who are not familiar with the world of allergies. In many cases, parents direct the anger towards each other especially if one is still angry while the other has accepted the chain of events.
Bargaining - The parents of the allergic child start to doubt the severity of the allergy. They hope that their child can have a little bit of the allergen without reacting to it; that if they can at least have the allergen in something small that this will be okay. For some parents, eliminating the allergens and keeping reactions at bay means that their child does not have special needs and is "normal", and can pursue activities enjoyed by other children as well.
Depression - Reality begins to sink in and parents realize that their child is special, especially if there were a few close calls. They withdraw and disconnect from others for fear that they might expose their child to the allergen. Some may even cut off ties with family and friends who do not understand the nature of allergies. They realize that they cannot do the things that other non allergic families do, such as going out to restaurants, to the movies, or play dates. They inadvertently isolate their child fearing for his/her safety, particularly if friends and family are not making an effort to create a safe environment for the child. If support within the local community is limited or nonexistent, this feeling of demoralization is compounded.
Acceptance - Parents will eventually accept the dramatic change in lifestyle. Many will actively manage and deal with everyday situations through prior preparation and education. Some will become advocates for the rights of those with allergies and will dedicate all their time towards the spread of awareness and information about allergies. Others may choose to remain secluded after gathering the necessary information and take the us versus them approach.
I'm aware that there are a large number of people involved in the allergy community who would like all allergy sufferers to believe that the world is a great place and that life, although altered, is still pretty much the same. They would have you believe that support is on every corner and that you're not alone. Perhaps that is true for some, but I would much rather have someone give me all the facts, good and bad, as opposed to only some of the facts. When you first stumble unto a support group, there is this sense of belonging and euphoria, if you will. It's almost like a drug high; it feels good while it lasts but then you come crashing afterward when you discover that all is not well. I think newly diagnosed (and seasoned) families may be interested in a different point of view. This article does not include "good news" - you can get that anywhere. There are plenty of people, web sites, books, and other venues that focus on nothing but the positives in the world of allergies. The food allergy battle may very well be a victorious one (someday), but this piece is about what takes place in the trenches. This is about one family's experience but try to think of it as part of the big picture. This is what I see when I take off those pink tinted glasses, and stop viewing the world through a field of roses:
- No one cares more about your child than you. Your child's survival depends on you, the parent, not the doctor, not the babysitter, not family, not school, and not friends. You will meet people in personal and professional capacities who will come across as sincere but really their underlying motivation will often stem from self preservation and their fear of causing harm to your child. They are afraid of the liability and so refuse to be responsible for your child. That means daycare, babysitters, as well as family and friends. Do not be surprised if even your closest family members refuse to babysit your child or show no interest in easing your hardship. Ultimately, it is their best interest that they're looking after, not your child's.
- Support is not available on every corner, not in this province. Perhaps larger provinces may have support for those living with anaphylaxis, but in small provinces things are quite different. At first, you will be inclined to move to a different country, where laws are more accommodating to those living with allergies and where education and awareness is more prevalent. Then you will come to the realization that this is not going to work for various reasons. Allergy organizations have their own agendas and work on things according to their convenience and set of priorities which may not match yours.
- Get in the habit of hoping for the best and preparing for the worst. Most people are selfish, ignorant and suffer from tunnel vision. They have no desire to educate themselves on matters that do not have a direct impact on their life, even if their actions negatively affect others. Our actions are inherently self serving, even those that relate to our offspring such as protecting and providing for our children. Its purpose is to ensure the survival of our species, and to increase our share of the genetic "market" as it were. From a logical point of view, it makes total sense yet seems oddly disturbing. This is a philosophical discussion that perhaps belongs to another time. Nonetheless, what it boils down to is that for every one person who genuinely cares, you are likely to find 99 other people who just don't give a s**t.
- Get accustomed to being ignored and let it roll off your back. Generally, people will not respond to your emails and will not return your calls (even within the allergy community). It's part of the process. You are unimportant and a nuisance to them and not someone they want to deal with. Expect ignorance and callousness. I've had daycare staff yell at me when I called to inquire about whether they take in kids with allergies. These are people I have not met or spoken to before, but as soon as they hear of severe food allergies they loudly bark at me "NOT INTERESTED!" and hang up. It's not personal; it's a liability issue to them.
- Get with the program. Your child has special needs just like any other kid with a special need. If there is funding for special needs children, your child will be at the low end of the totem pole. If there are any special circumstances or accommodations for people with disabilities or special needs your child will not qualify because allergies are not seen as a disability. Even with government and institutional programs, your child will not be accommodated due to allergies. Take the CRA's decision to grant Gluten allergic individuals the ability to claim their gluten free foods under medical expenses. A child who is diagnosed with Celiac Disease can claim that expense, because according to the CRA, gluten free foods are hard to find and expensive and that creates undue hardship for the family. Yet, a child with a life threatening allergy to wheat and barley for example, cannot claim that expense, even though they buy the same gluten free food, and in fact if they were to consume those gluten foods they would suffer anaphylaxis.
- Do not be surprised when parents of non allergic children take it upon themselves to educate you on proper parenting skills and what constitutes neglect. I've met many parents along the way who believe that I should be staying at home with my child and was even told flat out by one parent that I "should not let my daughter out of the house because of her allergies." Most parents will judge you, and some of them will be parents of allergic kids. Some parents expect you to quit your job and stay at home with your allergic child yet somehow still manage to magically make money. Those are the same people that send their child to school sick because they could not afford to take a day off work.
- It's going to be shocking at first but get used to the fact that within the allergy community there is a multi-tiered system for allergies. It's not deliberate (though some might argue otherwise) but it's definitely present. Often children with only peanut allergies get preferential treatment. If an issue about peanut allergy arises, allergy organizations will gather and rally for support and advocacy. Any other allergy is parked on the sidelines. Many parents of peanut allergic children will tell you that peanut butter is especially hard to clean because it clings to everything and that is why banning it is a necessity. I beg to differ. Try wiping margarine off a surface without thoroughly soaping it. To a child with a severe milk allergy, dairy margarine is as poisonous as it gets. Yet parents, even ones with peanut allergic children, will be the first in line to protest if you even hint at banning milk products, and in that they have the backing of allergy organizations.
- You will be exposed to all sorts of theories and ideas out there. There will always be one excuse after another for the reason why one allergy is treated different than another. You will commonly hear that peanut allergic families for example, have been fighting the allergy battle for a lot longer than other allergies and that is why they got what they have today, that this somehow justifies the type of preferential treatment they get. And you will keep hearing that, even though your child is also allergic to peanuts, yet they speak to you like an outsider, like your allergies don't fall under the same category. Most people are often just confused and misunderstand your intentions: that ALL allergy sufferers be treated equally.
- As frustrating and offensive as it sounds, expect to be asked for photos. Get in the habit of taking pictures of every reaction and documenting in detail what you think led to the reaction and what medication was administered. Doctors will not trust your judgment or assessment of the situation. You don't have a medical degree and so they are inclined to believe that when it comes to allergies, you are either paranoid, exaggerating, or misunderstand the facts. Often, they do not see the reaction when it happens. They believe that you believe what you say is true but they will require proof to make an accurate assessment. That being said, do not take these people for granted. They work long and hard to make life better for you and your child. They see a lot of patients and because allergies are on the rise it's no surprise that they are diagnosing new patients every day. They may not be able to give you the time of day, but they often work very hard behind the scenes to advance the allergy cause.
- Expect to hear nasty and unkind remarks about your child and their condition. You will be told that your child is a genetic anomaly that was never meant to develop into a human being, that survival of the fittest ensures our species remains strong by weeding out the weak and that by catering and protecting children with allergies we are allowing genetic defects to run rampant within our species thereby weakening it and diluting the strong genetic code. Do not let it bother you. Those people change their mind as soon as they get sick.
- Do not be surprised if your child is labeled. I've seen (and heard) a number of people refer to my child in terms other than her name. I've heard a teacher call her "heat rash girl", and several friends and babysitters have referred to her as "allergy girl". Those are just a few of the things that have been said to her face. Do not let it bother you especially in front of your child. You don't want her to in any way perceive that she is a burden, because she is not.
- You will meet at least one or two allergy parents who will see the silver lining in everything. They will be the ones who will be able to put a positive spin on even the most terrible of events. They will encourage you to learn from your mistakes and will try to find something positive in the negative. They can have very valuable advice and they are often very nice people, but be aware, they have been doing this longer than you and have acquired a bit of a thick skin. It's not that they don't care or aren't listening. On the contrary, they most likely understand exactly what you are going through because they have been there too, but this is their way of coping with the bad stuff.
- Do not underestimate the power of the world wide web. I have gotten more information and support from internet sites such as Allergic Living's forum for example, as opposed to local support groups and official allergy organizations. You can reach a much wider group of people who have been exposed to many things in the allergy community and there is a wealth of information on allergy forums and other allergy sites. Pay special attention to blogs by other allergy parents. You will learn from their experiences (or mistakes) and generally speaking have no qualms providing information as they don't have liability issues beyond the disclaimer on their blog or web site.
- Last but not least, understand that change does not happen at an exponential rate and that in most cases, for things to really improve, something dramatic has to happen. Unless a number of people in high public office have children with severe food allergies, laws and policies will not be easily implemented because no one in office cares enough to push for any change. In this province, a child will most likely have to die of anaphylaxis before any real action is taken to prevent it, especially for children with multiple food allergies. You just have to make sure that it's not your child.
With the above in mind, I am not going to tell you that everything will be okay, but I ask you not to give up. Things get better because you learn to adapt quicker. Allergy parents are a special breed. We are strong, resilient and creative. Keep your chin up and refer to this whenever you have doubts.