Advocacy isn’t easy but ignorance is worse. Unfortunately there are many happy in their “fool’s paradise” who choose to perpetuate misconceptions that are more comfortable to them than the truth especially when related to health. Here is a bit from my personal media accounts after another particularly frustrating encounter of someone arguing the merits of “Pollyanna” thinking.

“Science can give wonderful things but I really wish people would stop clinging to it like their sole source of breath. By the time studies are published and get into circulation its 7 or more years before that information becomes general practice. Now consider rare diseases that have very little press and published articles. There is no large entity in the general medical community looking out for us, pushing for us, helping us.

Receiving quality care is not our average experience. Not all doctors are bad but most treat us badly out of ignorance because we aren’t in their textbook. This can lead to patients staying in dreamy denial after their doctor tells them there is nothing to be concerned with.

Would you let an auto mechanic take the place of the fire department when your house is on fire? No they are not qualified or have the tools to respond appropriately. That is what zebras fight, most doctors are not equip for us. Its up to patients to reach out, connect, and learn from each other as those living in the disease are more capable than most doctors we encounter.

Raising awareness of possible effects and complications aren’t scare tactics. Its a realistic portrayal of the possible gamut of issues a disease can cause. Its not every case but when your disease is unusual from the start you need to be aware of possible outcomes because I can assure you the majority of who you will seek medical care from won’t be competent in your disease.”

The person who inspired this believes in medicine and doctors as “God”. Infallible and always working in our best interest. Its very fortunate for them that they haven’t had complications to shatter that belief, its truly a luxury to be in that situation. But for those of us who are fighting for quality of life or our literal lives and are often dismissed, belittled, and perpetually misdiagnosed there is no safety in that assumption.

Some people think I am overly aggressive or loud in my advocacy. I say when you don’t have sheer number on your side you must be loud for others to even hear a whisper of your message. I’m not anti-medicine and though I believe in lifestyle and self reliance that isn’t always the practical solution. If I am in anaphylaxis I certainly want the peace of mind on the way to the ER that they have stocked Epinephrine. When I’ve had intestinal impactions or obstructions as humiliating and painful as it can be I am happy for the tubes, fluids, and drugs that keep me from perforating my digestive system and eventually dying of sepsis.

Medicine has its place and its successes but its chronically fails the chronically ill especially in its ignorance of rare disorders. Patients who insist on perpetuating lies of comfort harm both patients now and in the future. If you cant stand up for your own life and well being to a system that will try to stifle and deny you how will it ever improve for anyone? So in conclusion ill leave you with my personal advocacy anthem in Little Texas – Kick A Little enjoy!

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