About Mom’s Chronic Ride

cropped-cropped-momschronicridepurple21I am a woman that’s 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 care, treatment and record keeping by doctors offices. This was all partly triggered after I was forced to fight over twelve years — and lost — one of the most difficult battles to win… Social Security Disability Insurance. The other part is because of the discrimination that I have learned many women face when seeking medical treatment.

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 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, so if I was at a doctor’s office… there was a good reason.

The greatest advice one of my ex-doctor’s said to me was to look up “Fibromyalgia” online. He’d half-assed diagnosed me with it by then, and told me to look up the condition — which also showed me all the knowledgeable medical websites available that could help explain my symptoms (he was unable to explain the condition to me himself; he also said doctors considered Fibro a “throw away diagnosis”, so yeah).

When I got home and looked up Fibromyalgia, I learned a lot about my doctor that day… He wasn’t paying as much attention to my complaints as I thought. I went back to him with my research, and he agreed that “we needed to get to work”.

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.

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 their offices a “Medical Practice” because they are practicing medicine — they’re always learning, even after all those years of medical school. When I finally realized that, my views changed. 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 anymore (although, I admit I still encounter bad doctors once in a while).

Please follow my blog (I’m also on Facebook & Twitter). 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 school where people become well-versed with their many medical symptoms and diagnoses by searching for them online — usually on a search engine like Google (hence the term “Google Doctor”). Don’t knock it, many have managed to help get officially diagnosed by researching everything carefully and thoroughly, and addressing a licensed medical doctor with their findings. 😉

 

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