This month, I am working my way through the 30 Day Chronic Illness Challenge. It was something I found on Tumblr that was created by @cfs_zombie. There is a new writing prompt for each day that focuses on chronic illness. The challenge is to complete each of the 30 blog posts in 30 days. It can be writing, photos, or however else you choose to express yourself.
Day 2: How have these illnesses affected your life?
I think the best way to begin with this topic is to go into how my food allergies affected me when I was in school. As I mentioned in the Day One blog, I was not diagnosed with food allergies (or other allergies) until I was 17. Up until that point, I had absolutely no idea what was making me so sick all the time.
When I was in elementary school, I figured out that drinking an entire carton of milk at lunch would make my stomach hurt. This was in the late 1970’s – early 1980’s. None of the lunch ladies or “recess moms” had any idea what food allergies were. There were no awareness campaigns about allergies back then.
This meant the adults at school (and at home) believed that I was faking it when I got sick. They couldn’t comprehend what was making me ill, therefore (in their minds) I wasn’t actually sick at all. Looking back, I am astounded by how dangerous a situation I was in.
Back then, it was considered “wasteful” for kids to throw out an unfinished carton of milk at lunch. My best guess is this line of thinking popped up because the economy really, really, sucked. Inflation was high, gas prices were astronomical, and both food and gas were somewhat scarce. (I can remember waiting in gas lines).
As a result, the adults who were lunch room monitors chose to bully kids to finish all their food and milk. (This was not considered bullying at the time). Unsurprisingly, I would start experiencing painful cramps shortly after that and end up in the nurse’s office as soon as I could convince an adult to let me go there.
It was obvious that I was in a lot of pain, and that I was in and out of the bathroom very frequently. Today, many adults are aware of the symptoms of lactose intolerance. At the time, the school nurse believed that I was faking being sick so I could avoid being in the classroom while math instruction was taking place. She actually told this nonsense to my mom (who believed her despite the fact that one of my siblings had already been diagnosed with lactose intolerance).
By the time I was 8 or 9, I realized that the only way to avoid getting painfully sick at school was to not eat. By fifth grade, I was also skipping breakfast. I knew that I was getting sick after eating, but was unable to isolate what foods were problematic. By the time school was over I was exhausted, and famished. Avoiding all food, all day, was not an idea solution, but it was “working” for me at the time.
Things changed when I was 12 years old and in 7th grade. Like many other 12 year old girls, I got my first period that year. This, on it’s own, wasn’t something I was concerned about or felt was a traumatic experience. Looking back, I realize that menstruation had an extremely negative affect on my already precarious health.
I wasn’t eating much all day long, and was, somehow, getting by. At the time, I figured out that I needed to avoid dairy food. But, the rest was a gamble. Getting my period pushed me into borderline anemia. I started getting dizzy spells that year.
The typical blood loss that a healthy girl would have easily tolerated every month was not something my body could handle. It also wasn’t something I could quickly recover from and “go back to normal”. (Nothing about my health was “normal”).
By the time I got to high school, I was refusing to eat anything until after school was over and I was back at home. The school days were long, and I was involved in some after school activities (which made the day even longer). I don’t think I ever passed out at school, but I have done it after school. This freaked out some of my friends.
Whenever I finally got home, I would go directly to bed and sleep through until the next morning. This did not make me wake up refreshed. Instead, I was still exhausted (possibly more so because I didn’t always eat before I passed out for hours). I was absent from school at least two or three days every week.
I got through high school by taking a lot of caffeine pills. It was my misguided solution to solving the problem of being flat out exhausted all the time. I didn’t get cramps, digestive issues, or hives from the caffeine pills. They helped me to manage to stay awake in class. The soda that I drank all day long helped prevent my blood sugar from dropping low enough to make me pass out.
Every day, I would cough, sneeze, and wheeze. It dawned on me that most high school students didn’t need to constantly carry kleenex around with them. At the time, I think I figured I had a cold that just wouldn’t go away.
My untreated environmental allergies got so bad that it resulted in about a year or so of complete hearing loss. My parents believed I was faking it, that I could hear, but was intentionally ignoring them. I learned to read lips. (More details about what happened next, and how my hearing was restored, will be discussed in tomorrow’s blog post).
This gives you a pretty good idea of how my allergies, and borderline anemia, affected my childhood (and teenage years). I remember being constantly starving for most of elementary school, and entirely exhausted from middle school onward. I somehow managed to have a social life, but I figure it was very limited compared to that of healthy teens. Spending two or three school days a week absent, in the days before the internet existed, meant that I missed out on a lot.
As an adult (and post-diagnosis), things changed. I now had (some of) the tools I needed to help alleviate the symptoms of my borderline anemia and severe allergies. This was when I started reading the ingredients on food packages – all of them – before tossing something into the grocery cart. I started to advocate for myself in order to prevent having an allergic reaction to something.
This began on a “trial and error” basis. Today, at age 40, I feel like I have my allergies mostly figured out (including the ones that I only became aware of a few years ago). I’ve also learned to recognize when the anemia has returned and that it means I need to do something about it immediately.
I had allergy testing done at age 17, which revealed I was allergic to wheat, rye, and barley. Unfortunately, few doctors had heard of celiac disease, or gluten intolerance back then. I remember my doctor shrugging at that one, and giving me no advice at all about it. Looking back, this explains some of the exhaustion and digestive issues I’d had for most of my life.
I have to read the menu at every restaurant I am considering going to long before I set foot in the door. There are plenty of places that are too dangerous for me to dine at (thanks to my many food allergies). As an adult, I am no longer getting horrific cramps after lunch every day. This is the result of diligent effort and research. I will never be someone who can try out a new restaurant and order whatever sounds good.
There are stores that I cannot walk into (or work at) because they are filled with scents that set off my allergies. Pet stores make me wheeze. Grocery shopping makes me ill due to the floral department in the store. Going outside requires a certain amount of “recovery time” after I return home. I’ve had employers and co-workers get upset at me because I’d gotten sick at work.
Leaving my home requires a “battle plan” (and the need to carry a lot of medications). There have been many times that I have to cancel plans at the last minute because of exhaustion or an unexpectedly bad allergic reaction to something.
The symptoms of rheumatoid arthritis started popping up a few years ago. This doesn’t change my already limited life very much. I am annoyed by the pain in my joints and the way it slows me down sometimes. I am beyond the point where I can attempt to “fake being well” for people, though.
Today, I am very lucky that the people I choose to have in my life are very understanding about my chronic illnesses. They know that I am not faking being sick. It would have been nice if I been that lucky as a child. I cannot help but wonder how the years I went through, without any treatment, affected my overall health.
Image by Numb3r on Flickr.