I am a woman on a mission to help spread awareness about the effects invisible illnesses and diseases have on people and their families; and the importance of proper doctor care, treatment and record keeping—partly triggered after I was forced to fight over twelve years — and lost — one of the most difficult personal battles to win… Social Security Disability Insurance.
I was finally, officially diagnosed with Secondary Progressive Multiple Sclerosis and Systemic Lupus Erythema in 2011, Chronic Reactive Epstein-Barr & Ehlers-Danlos Syndrome in 2014 — and many other painful & debilitating conditions after searching well over a decade for answers — and only because I took charge of my own medical health as I was forced to graduate from the InterWeb University* and becoming a part-time Google Doctor.
It was a rough journey because I wasn’t really getting any real help when I first realized something was really wrong. I had been seeing doctors for years for my symptoms; but except for a couple of diagnoses that were considered “mild to moderate” on imaging reports, they didn’t explain the symptoms I was experiencing. Worse yet, the symptoms that I experienced were not being properly recorded by the medical group I was visiting at the time— an error on their part that has cost my family years of lost income because of complicating Disability guidelines.
Before I started advocating for myself, I heard many remarks from some doctors that were rather unbelievable, but sadly not uncommon for many patients to hear. Everything from I was “trying too hard” to get a diagnosis to being “too young” to experience the symptoms I had… and my favorite: I “need a psychiatrist more than I needed to see him”.
All I wanted were answers to my painful and disabling symptoms — I would never have been in their office otherwise. To be honest, I’ve had a slight fear of doctors ever since I was five years old. I was slapped by a dentist after he hit a nerve while drilling for a cavity. That was just the beginning of the experiences I received over the years by doctors that left a bad taste in my mouth (no pun intended).
The greatest advice one of my ex-doctor’s said to me was to look up “Fibromyalgia” online. He’d just half-assed diagnosed me with it (and he was unable to explain it to me himself — plus he said it was considered a “throw away diagnosis” because they didn’t really have any answers).
Being a self-proclaimed internet geek since the mid-90’s, I’m still baffled that I didn’t bother to look up my symptoms long before that (I guess I was trying to allow the doctors to do their job). When I looked up Fibromyalgia, I learned a lot about my doctor that day: He hadn’t been paying attention to my symptoms very well.
The more time passed, the more I was treated with disdain by this medical group. No matter how many painful, fatiguing and debilitating symptoms I experienced over the years–even after a bout of Meningitis in 2005 — it didn’t deter the doctors I thought I trusted, from treating me like I was a hypochondriac and psych case.
The one thing that I have learned since I have gotten sick, is that we all need to be aware of our relationship with our doctors by making sure that they are doing their best for our health. There are so many invisible illnesses and diseases out there taking over people’s lives with the snap of a finger and people are scared, in pain, and alone because they don’t know what’s happening to them — and they usually aren’t getting the answers they desperately need.
I have also realized that doctors call it a “Medical Practice” because they are practicing medicine — they are always learning, even after all those years of medical school. When I finally realized that, my views changed for the better. Today, I have more confidence how my health is being handled — especially with my relationships with doctors I encounter — because I refuse to be ignored. I have also taken on the challenge of making teaching moments whenever I get the chance—just to make sure their next patient gets the best doctor they can possibly be.
Please follow my blog (and my Facebook or Twitter accounts). Let’s work together to bridge the gap between doctors, patients, families & friends that creep up from all the confusion that a chronic illness brings… Everyone needs to understand what it’s like to be chronically ill if we are ever going to create change… Especially doctors and the Social Security Administration.
*InterWeb University — A fictitious medical college where people become well-versed with their many medical symptoms and diagnoses by searching for them online — usually on search engines like Google (hence the term “Google Doctor”). Don’t knock it, many people have managed to get officially diagnosed by researching carefully and thoroughly, and addressing a licensed medical doctor with their findings. 😉