How Did You Get a Diagnosis?

This blog is part of the 30 Day Chronic Illness Challenge. I found out about it through Tumblr. It was something created by @cfs_zombie. Every day, for 30 days, there is a new writing prompt that focuses on a person’s chronic illnesses. The challenge part (at least for me) is to see if I can find enough energy to complete one blog, on a specific topic, every day for a month.

Day 3: How did you get a diagnosis?

My story about how I got my diagnosis is a bit strange. My parents were in complete denial about the fact that I was sick. They insisted that I did not have allergies and that I was faking my symptoms. I wrote about more of that in my blog for Day 2 of the 30 Day Chronic Illness Challenge.

As I pointed out in the previous blog, I was a child during the late 1970’s and early 1980’s. Nobody really knew or understood much about allergies back then. The internet, as we know it today, did not exist yet. This meant that my parents could not have Googled the word “allergies” in an effort to learn more about them.

You might assume that my parents were simply uneducated about allergies, and their lack of knowledge was what caused them to conclude I was faking being sick. Unfortunately, that simply isn’t the case.

One of my younger siblings had allergies that were even more severe than mine. By the time he was 3 (and I was 7) he had been in and out of the emergency room several times due to severe allergic reactions. My parents took him to see a doctor, who suggested an allergist. The result was my brother had allergy testing done.

He was prescribed antihistamines (and an Epi-Pen) and received allergy shots. My parents were given tons of instructions about what foods he should avoid, what different types of allergic reactions looked like, and what to do if my brother had another severe allergic reaction.

In other words, my parents had a vivid example of what a child who had severe allergies looked like, acted like, and felt like, right there at home. They were more educated about allergies than any adult I had come across at the time. I remember my mom teaching the school nurse how to use my brother’s Epi-Pen (and how to determine when he needed it).

So, why did my parents insist that I was faking being sick? It’s possible that they were overwhelmed by my brother’s chronic illnesses (he had other things going on beyond allergies) and could not mentally cope with the thought of having another child who also had chronic illness. At the time, my sister had some severe health issues too. (Those eventually cleared up on their own). Their way of dealing with it was to deny reality and insist that I was healthy.

That’s not the full story, though. Although my parents treated my siblings rather well, they were extremely neglectful and abusive towards me. (The details on that are stories for another time, perhaps). I believe that my parents decided that I wasn’t worth the money it would cost to have me seen by a doctor. They simply did not care to investigate what was making me so sick all the time.

When I was a freshman in high school, my untreated allergies had gotten so bad that I lost my hearing. I learned how to read lips, and to figure out what note I was singing in choir based on how it felt in my throat. I guess I learned how to cope with the situation as best I could.

Have you ever had a hearing test done at school? My school did that (as well as vision tests). I’m not sure how or why I was selected to receive a hearing test, but I was. I failed it miserably.

This made the school aware that I was in need of some sort of medical attention. They contacted my parents about my hearing loss. I suspect that the school must have insisted that my parents not only take me to an audiologist, but also provide the school with proof that I had been seen by one.

The audiologist did some hearing test of his own. The results were bad. He talked to my parents, while facing away from me, so I’ve no idea what he said to them. Whatever it was started the process of me finally getting health care.

The audiologist sent me to another doctor who removed the excessive wax build up that was in my ears. I believe the process/technique is called “irrigation”. The doctor used a device that blasts water into my ear canals. (It wasn’t painful at all).

My hearing improved – but only very slightly. The audiologist suggested that I have “tubes” placed in my ears.

Unfortunately, upon further examination, he discovered that my ears are malformed and it wouldn’t be possible to do that. Long story short, my sinuses can drain through my ear canal when my allergies are really bad. This probably led to the excessive wax build up.

The audiologist referred me to another doctor who could find out more about my health problems. I could tell that my parents were angry about being “forced” to take me to another doctor (who might find proof that I wasn’t faking being sick). The audiologist had already found proof that I wasn’t faking my hearing loss. (My parents had been insisting that I could hear just fine and was simply choosing to ignore them.)

The new doctor did something few adults ever had – he asked me questions about my health and actually listened to the answers I gave him. It was the first time I was able to describe all my symptoms – the digestive issues, the sneezing/wheezing/runny nose, the fatigue, the dizzy spells – everything I was aware of at the time.

The doctor took a blood sample and, from that, determined that I was getting dizzy spells due to borderline anemia. This was my first, official, diagnosis of a chronic illness. He suggested that I take an “iron pill” on days when I was feeling dizzy, and suggested that I should start eating more than once a day. (I’d been avoiding food all day at school in order to avoid getting sick).

From what I remember, the doctor suggested that my parents take me to an allergist. But, they chose not to. They now had, in their hand, all of the paperwork that the school required. My hearing had slightly improved, which was just enough to pass the next hearing test at school, and that was that.

As you might expect, my health deteriorated during my sophomore and junior year of high school. I still had severe, untreated, allergies. I lacked access to the “iron pills” the doctor told my parents to get for me. (They didn’t buy them – I didn’t have a job yet). I started getting extremely severe headaches that I suspected could be migraines. Between all that, and the constant fatigue I was still suffering with, I was missing a lot of school.

The school eventually noticed my frequent absences. Somebody at the school talked to my parents, again. Whatever was said resulted in my mom taking me to see another doctor. I was 17 years old, and the doctor talked directly to me about my health (bypassing my mother’s obstinateness entirely).

He concluded that I probably was experiencing migraine headaches. He gave me a list of foods that I should avoid – because they tended to trigger migraines. He then looked at my mom and pointed out that migraines are also caused by stress. I suspect he had some idea that I was being neglected and abused, but no proof as of yet.

This doctor referred me to an allergist. It wasn’t the allergist that my brother was seeing. All those years, my parents could have easily taken me to that allergist, but they chose not to do it. I suspect the school’s involvement with my health may have required my parents to prove that they had taken me to see doctors.

This was how, at 17 years of age, I finally got to see an allergist. Everyone at the allergist’s office talked directly to me about my health (avoiding my mother entirely). I was practically an adult by then, so maybe that is normal procedure?

I has blood testing done, and skin testing done, and the results proved (finally) that yes, I did have allergies. I had severe allergies, and loads of them. I spent about a year and a half going back to this allergist for allergy shots. I was given a list of foods that I shouldn’t eat. (However, since no one had heard of celiac disease at the time, the allergist didn’t tell me to avoid the wheat, rye, and barley that I was allergic to).

When it was time for me to leave for college, the allergist taught me how to administer my own allergy shots. It’s a bit of a “learning curve”. I was taught to keep the vial of allergy solution (for lack of a better term) refrigerated. I gave myself my own allergy shots through freshman year of college. Looking back, I realize just how dangerous that situation was. Send a college student, who is living in a dorm, off to school with several packages of syringes – what could possibly go wrong?

I stopped doing allergy shots by sophomore year of college. I felt like they weren’t as effective anymore, and my finances were bad (which prevented me from seeing an allergist near school or paying for the syringes). So much for that. But, I did continue to take the antihistamine that I had been prescribed.

The migraine headaches miraculously disappeared shortly after I stopped living with my parents. Seems it was due to stress after all.

My gluten allergy was diagnosed by my acupuncturist a few years ago (when I was in my late 30’s). Long story short, I stopped eating foods that had gluten in them for a while. Then, I ate a plate of whole wheat spaghetti, and the fatigue, digestive issues, and itchy skin immediately returned. That’s how I learned that I am gluten-intolerant.

I have not yet been diagnosed with rheumatoid arthritis. At the time I am writing this blog, it is the beginning of January 2014. I have health insurance coverage (Thanks, Obama!) but haven’t gotten the packet of information about all the things it covers just yet.

I suspect that 2014 will be the year I get some testing done and get diagnosed with rheumatoid arthritis. Oh, and my acupuncturist suspects I probably have chronic fatigue syndrome (based on her noticing that my adrenals are very low, all the time) so I should get that looked at, too.