What I Discovered When Researching My Own Symptoms

It began when, in my mid 20s, I went to a clinic because I was informed that a sexual partner had gonorrhea. I tested positive and was administered an antibiotic injection and given a prescription. While the doctor was giving me the injection, he said, “That must have been one great party.” Taken aback, I responded, “What?”

“Well, there was a girl in here just before you who lives in your neighborhood who has it too. And, there has been an increase in positive tests this week.”

“Just because I have this at the same time as someone else who lives in my neighborhood is being treated for it does not mean I was being promiscuous at a party!”

I was appalled that a doctor would think this way in the first place: but, actually to say it out loud to a patient?!

In my early 30s, I went to the doctor for chest pain radiating through to my back. He said, “You have pleurisy.” I told him, “I don’t have pleurisy. I know what pleurisy is. My ex-husband used to get it often. This is different.” He refused to run any tests and sent me home with an antibiotic prescription. Later, when I ended up in the emergency department, where they actually ran some tests, it was discovered that I had gallbladder disease.

In my mid 30s, I was having some strange visual symptoms which seemed like hallucinations. They scared me so badly that I checked myself in for inpatient psychiatry. The doctor decided I had major depression and treated me accordingly. I under went horrible side effects of all of the medications he tried to fix the problem—a page-long list of psychiatric medications of every class—old, new, and in between, even experimental. None of these resolved the problem and I was talked into 12 treatments of electro-convulsive therapy. While the treatment did stop the visual disturbance, it created a new set of mental health issues and literally destroyed my family. Years later, after more misdiagnoses, I would come to find out that I actually have borderline personality disorder (BPD) and schizotypal personality disorders, for which the treatment modalities are much different than the psychiatric treatment torture I endured.

Then, in my mid 50s, I had gotten stuck by a needle as I was picking up trash around a dumpster at the apartment complex I was living in. Frantic, I called my daughter who told me, “You need to go to the ER and get PEP.” I asked, “What’s PEP?”

“Post exposure prophylaxis. They can give it to you to prevent you from coming down with HIV when there is a high risk of having been exposed.”

I went to the ER and was denied PEP by the doctor who said, “PEP is only administered in a hospital setting. HIV transmission is only possible from large bore needles and the one you were stuck by is small bore.” I argued with her because, on the bus ride to the ER, I had been reading the online literature regarding PEP on the CDC website. The information stated that transmission of HIV has even been documented as coming from a blood glucose monitor lancet when a diabetic man’s young daughter was accidentally stuck by it. The doctor, then, tried to dissuade me by telling me I don’t want the side effects. I asked her what the side effects were, even though I already knew from reading the documentation on the CDC website. She replied, “Horrendous, explosive diarrhea.” I said, “I have undergone the prep for two colonoscopies in my life. I am not averse to some explosive diarrhea if it’s going to prevent HIV.”

Her response? “I’M the MD and I’m not prescribing it!”

I am 60 years old now and, fortunately, I have, so far, escaped from testing positive for HIV.

The most recent incident where a doctor has treated me like a hypochondriac was when, after years of trying to figure out through research what the root cause of the chronic cough and thick sticky mucus I have had as far back as 12 years old, I told my primary care doctor that I think I might have some sort of cystic fibrosis going on. I told her my symptoms and the fact that my sister and her son genetically tested positive for the cystic fibrosis mutation and are carriers, that the geneticist who found my daughter and two of her daughters tested positive for the pancreatitis mutation said he thinks it came from my side of the family because I have had an acute pancreatic attack which was not alcohol related and so had my mother, and I know that pancreatitis and cystic fibrosis are related. That’s why most of the pediatric pancreatitis patients seen in hospitals are also cystic fibrosis patients.

The doctor became irate and said, “You don’t have cystic fibrosis. If you did, you’d be dead by now because people with cystic fibrosis don’t live as long as long as you have.”

Two years later, it has been discovered by a sputum culture that I have a psuedomonas aeruginosa colonization in my lungs and the pulmonary specialist has ordered a sweat chloride test to determine if I have a mild or moderate form of adult cystic fibrosis.

Doctors are not gods! They are not infallible. And, sometimes their arrogance precludes them from deriving the correct diagnosis from the facts that are staring them in the face because they don’t take the time to research a concern that an intelligent patient, who does their diligent research for their own health, might have. Also, under this country’s health maintenance organization structure, doctors just simply have no time to research whether a client’s questions and concerns may have validity because they have back to back appointments with patients every 15 minutes throughout every day, and they must spend a good deal of their day involved in the process of insurance documentation. In addition, the continuing medical education requirements, for doctors to maintain their license to practice, in most states in this country is only 20 hours per year!

The bottom line is this: take the risk of being labeled a hypo- or cyberchondriac or as someone with Munchhausen syndrome. This is your quality of life we’re talking about. Do your research and ask questions. There are many reputable websites on which to do your research, including the official website for Centers for Disease Control, National Institutes of Health and Mayo Clinic, among many others. Research several websites for the latest medical journals and scientific studies as opposed to just one. Gather the data from many sources, including sources with conflicting information, to formulate the best questions to ask your doctors. As Dr John Bergman has said, “Your quality of life depends upon the quality of your questions.”