Having food, environmental, and drug allergies I have lived with one of the most misunderstood chronic diseases which everyone thinks they understand. I'm in the category that most allergists don't even see. Oh, in the larger practices - or in research settings - you get a few like me, but most people are dealing with run-of-the-mill hay fever or eczema. Anaphylaxis is usually from bug stings. Or the food allergies that are dangerous are all in the top 8. (Ok, if you are a real allergist or food allergy sufferer you are rolling your eyes because you know that ALL food allergy can turn deadly quite suddenly.)
You see, what makes me somewhat unique is that with my true IgE mediated food allergy, I truly never get time when it isn't in my mind. I live under the constant threat of death from a wrong turn - literally. I could walk into a place, and if I'm very unlucky, react so quickly to aerosolized food particles that I would be dead before I knew it. And too many people do not understand this simple fact.
Infertility, on the other hand, has a level of choice that, no matter how hard, allergy just doesn't. Now, I am in no way saying infertility has not devastated me in ways allergy could not. When I got the initial infertility diagnosis I was more than devastated, I fell into a deep situational depression from which I am not really certain I have recovered. That's why I started this (semi-)anonymous blog. To move through some of these emotions that I haven't got anyone to talk to about. There are a small percentage of women I have run into on the boards who deal with allergy - but I don't know any who have the same issues I have. (I wouldn't expect to find any.)
Now, in contrast, when I received my diagnosis of allergy at 20 - yes, it took that long - I felt like the world was lifted from my shoulders. I had answers for why I always felt awful. If I did not eat this list of things, did not take these drugs, and did remember to always have antihistamine in my system - Seldane-D to Claritin-D - I would feel good. I nearly flunked out of my freshman year in college due to being sick from allergy. I had terrible menstrual agony - not just pain, agony - due to allergy.
The allergy diagnosis did change a lot of things. I found out that I could no longer trust anyone until they were thoroughly vetted. Not doctors. Not nurses. Not family. Not friends. Not employers. Doctors would prescribe things that I am allergic to and claim it was not possible to be allergic to that. Friends no longer wanted to be with me because I could not go to certain restaurants (soy, rice, corn), go to the movies (popcorn), go shopping at certain times. Even work became a problem. I actually had to file an ADA complaint at one place of employment. Trust me, this is not a fun process. But if you can literally die, well, what option do you have?
Emotionally infertility kills. Literally allergy kills.
There are a plethora of studies showing how the depression around infertility is similar to that around cancer. Personally, I believe it is because infertility is a kind of death. I may tackle that issue in a later post - but it isn't imminent danger of death. There are other options in many cases to pass on your history - sometimes even a piece of your genetics.
There are also a plethora of studies done internationally showing that the majority of doctors - especially Emergency Room (ER) doctors do not treat anaphylaxis (aka, allergic shock) properly. A Harvard Allergist recently came out about this. There is only one recommended course of treatment that is only contraindicated in very specific circumstances. Intramuscular epinephrine followed with a course of steroids and H1 (benadryl) and H2 (pepcid) inhibitors. If the patient does not receive this treatment, even if the patient recovers in the ER, the patient can have a secondary even more dangerous reaction. And yet, most medical personnel do not take allergy seriously.
Now, those dealing with infertility know that short shrift is given to the signs of infertility in many women. Most of us had a gut feeling something was amiss before we could get a referral to an RE. Imagine trying to vet an RE who was also qualified to deal with the hyper allergic infertile patient? There won't be too many who understand the dangers involved.
Now, take a moment and think about dealing day-in and day-out with a disease that just plain acts weird but can kill at any moment. Even those with very real IgE allergy can get away with occasionally being exposed to the allergen with no significant reaction, then suddenly have a severe reaction. This makes some physicians dismiss all allergy. Immunologists have a theory known as "bucket theory" to deal with this - the more stressors, including allergens, the patient is dealing with, the more likely a severe reaction is to occur.
Infertility is socially isolating in one way - the need for people to talk about children. The co-worker who insists on talking about his child when you want to go to work to not have to think about that problem (infertility) is very real. Avoiding baby intensive events is another reason. Infertility's isolation is nothing compared to having a food allergy.
A study was done among all different kinds of chronic illnesses - food allergy was found to be the single most socially isolating disease there is. Everything in every society revolves around food. Everything does not revolve around children - even though it feels that way when dealing with infertility.
When my allergies got worse, I literally had people tell me they could not be my friend because I could not go out to eat with them. My social circle got much smaller - but they also, I feel, are of a much higher quality. The only relationship I lost due to infertility is my brother and his wife - but that was probably gone well before this. I will probably write an entry about that in the future. I really believe that relationship died due to food allergy as well.
I do not want to be defined by either allergy or infertility - but I am. I am the allergic girl. Everyone knows me as the person allergic to half the universe. There are people who think it is so funny to say stuff about popcorn popping or some other item since it is so alien to them. They don't really understand that, in reality, they are threatening my life. I know the people in question don't understand what they are saying.
These people have never seen me involuntarily recoil in horror when I so much as see popcorn - the first reaction that almost left me dead. These people do not understand the utter despair and fear I sometimes feel because so much of life is permeated by a food that will kill me. Imagine being afraid to go into a gas station because they pop popcorn. I must use the "pay at the pump" option because of the popcorn popping in most gas stations. And yet people think it is a joke.
And then there are the people who question whether I should reproduce at all - not because of infertility. Rather because of my hyperactive immune system. Modern society doesn't have parasite problems, instead they have allergy. It is the anti-parasite subsystem of our immune system that causes IgE allergy.
Oh, and then there are the faux infertiles. The people who claim they had problems because it took them all of 6 months to get pregnant. Imagine the faux allergics who claim to have an allergy to steal recipes - something someone really does - leaving those of us with real allergies in danger of being lied to. And every person in the allergy community has been lied to by a food, or drug manufacturer, or a restaurant about ingredients. Or about how food is prepared. Why? Because some people think it is trendy.
Just as the magazines give people who are "pretend" infertile more space than the really infertile, they give the faux allergic space with a one line disclaimer.
Allergy has prepared for me for dealing with infertility. Oh, there is more, but that is for a later post.
| Issue | Infertile | Allergic- especially food |
| Medical Community does not understand the disease well. | Yes, but getting better. | Yes, and getting worse. |
| Disease has clear, recognizable presentation. | Not immediately, and not ever for "unexplained." | Yes, but no one actually reads the symptom lists except for allergists and PCPs with patients like this. |
| Socially isolating? | Yes, it becomes too painful to be around kids before you heal, somewhat. | Yes, food allergy considered most socially isolating chronic illness due to the prevalence of food in all social activity. Friendships and other relationships invariably lost. |
| Medical Professionals "get" the disease. | More and more do. | Nope, unless you are lucky enough to find a really, really good doctor. |
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