I am a woman, wife and mother on a mission to help spread awareness about invisible illness and diseases and the importance of good doctor care/treatment/records… and the biggest red tape war in most every disabled person’s lives–Social Security Disability.
I was finally, officially diagnosed with Multiple Sclerosis (considered “off record” secondary progressive) and Systemic Lupus Erythema in 2011; and chronic reactive Epstein-Barr and Ehlers-Danlos Syndrome in 2014 after searching more than seventeen years for answers–and only because I took charge of my own medical health as I was forced to graduate “InterWeb University”* and become a “Google Doctor”.
It was a really rough road especially because I wasn’t really getting any help when I first realized something was really wrong with me. I had already been seeing doctors for years for my never ending symptoms; and except for a couple of diagnoses that were considered “mild to moderate” on imaging reports, nothing explained the symptoms that I was experiencing. The symptoms that I experienced since my disability, unfortunately, were also not fully and properly recorded by the medical group doctors I was seeing at the time–An error on their part that has been costing my family years of lost income because of complicated Disability guidelines.
Before I started advocating for my health to doctors, I heard a lot of phrases from them that were rather unbelievable to hear, but apparently not uncommon to too many patients. According to some I was “trying too hard” to get a diagnosis; or I was “too young” to be experiencing most of the symptoms I had. And my favorite–“I should be consulting a psychiatrist more than I need to see him”.
I just wanted answers to my many mounting and disabling symptoms–I would never have been in their offices otherwise… I have a sort of phobia of doctors since I was about five years old. I was slapped by a dentist after I reacted when he hit a nerve while drilling for a cavity. That was just the beginning of the experiences that I received over the years by quite a few doctors that left a bad taste in my mouth.
The best thing one of my ex-doctor’s told me to do was to look up the condition “Fibromyalgia” on the internet (he was unable to explain it to me himself). Being a self-proclaimed internet geek since the 90’s, I never understood why I didn’t look up my symptoms before (I assume I was trying to allow the doctors do their jobs). But when I looked up the one diagnosis that he gave me after almost two years I learned a lot about my doctors that day: They had no clue what was really wrong with me.
Although I realize now that I was actually ‘sick’ my entire life (a story I’ll go into another day), it wasn’t until my early thirties that I knew something was seriously wrong with me.
However, my doctors barely paid attention to my complaints. It was practically assumed I was just seeking attention–partly because of my age (and apparently my gender was also not on my side). As time went on, no matter how many painful, fatiguing and debilitating symptoms I continued to experience over the years–and even after a bad bout of Meningitis in 2005 that managed to put me into my current disability, it didn’t deter a few of my key doctors from treating me like I was some sort of a hypochondriac psych case.
The one thing that I have learned since I have gotten sick, is that we all need to become more 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 that are out there taking over people’s lives with the snap of a finger, and people are scared, in pain, alone; because they don’t know what’s happening to them, and they aren’t getting the answers they desperately need because most doctors aren’t always well versed in every disease. The biggest thing that I learned during my journey was that doctors don’t always have the answers because, quite frankly, there’s just too much to learn about the human body and its “mechanics”–and not enough time in medical school to learn it all.
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 life changed for the better. Today, I have more confidence with how my health is being handled–especially with my relationships with doctors I encounter–because I refused to take no for an answer. I have also taken on the challenge of teaching them (doctors) whenever I get the chance–just to make sure their next patient gets the best doctor they can be.
Please follow my blog (or my Facebook or Twitter accounts). Hopefully, together we can find a way to begin to bridge the gap between doctors, patients, families and friends that creep up from all the confusion that chronic illnesses bring… Healthy people need help understanding what it’s like to be chronically ill if we are ever going to create change… Especially doctors and the Social Security Administration.
*Web University – A fictitious medical college where people become well versed with their many medical symptoms and diagnoses by searching for them online–usually on Google. Don’t knock it though, many people have managed to get their symptoms officially diagnosed by researching them carefully and thoroughly, and addressing a licensed medical doctor with their findings.