Never Underestimate the Power of Your Voice!! : Living with "Rare"

 Living with "Rare"

A blog devoted to navigating and analyzing life with 
Rare and Complex Disorders.



Never Underestimate the Power of Your Voice!!

by RNE submissions on 10/05/17

By Joanna Mechlinski

Unless you've been living under the proverbial rock, you'll have noticed there's a lot in the news about healthcare lately. Politicians argue daily about this or that plan; the average citizens simply worry about their needs being met. What happens if you have a serious condition and can't get the doctors or medications you need to survive? Living with chronic illness is scary enough without adding monetary fears to the mix.

Unfortunately, a lot of healthcare cuts are made without looking at real people. Someone at the top is tasked with saving money; he or she then looks at the big picture. Chances are, they have never had to struggle with serious illness, either personally or with a loved one. Thus it's much easier to look at things theoretically – at how they “should” be. Yet as we all know, things rarely work out the way we think they might. Life is simply full of too many obstacles and variables. Medications that “should” work for a particular illness sometimes do not; other times, unexpected secondary complications may develop. An insurance company guideline that sounds good on paper may not make as much sense in practice.

For this reason, it's crucial that we all share our stories. We need to put faces to rare diseases. We need to show the world just what a real person has to go through – not just the symptoms of the disease itself, but also with bureaucracy in the fight for basic existence. It’s just not right.

If calling or writing letters to politicians sounds too daunting, there’s still a lot you can do. Social media is a wonderful tool for spreading awareness – you can join existing campaigns, or start your own. Even posting pictures or facts with the appropriate hashtags can be a huge help. We’ve seen proof via viral campaigns like the ice bucket challenge, raising awareness for ALS, that social media can truly have an impact.

What’s the point? you may wonder. What do the Powers That Be really care about one little person…if my voice even makes it to them?

There’s a great quote by the Japanese writer Ryunosuke Satoro: “Individually we are one drop. Together we are an ocean.” There is really no other way to put it. Each of us may feel insignificant in the fight against something so enormous as healthcare reform; but put all our voices together and we’re a force to be reckoned with.

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A lifelong Connecticut resident, Joanna Mechlinski is a former newspaper reporter who now works in education. She was diagnosed with lupus, fibromyalgia and polymyositis in her early twenties. In addition to helping spread rare and chronic illness awareness, Joanna is also passionate about animal advocacy, reading, writing, and road trips.

 Mary-Frances Garber is a licensed genetic counselor, providing supportive counseling for families in search of a diagnosis, a listening ear for those receiving a new diagnosis and decision-making counseling for individuals or couples facing choices regarding having another child . She also is available for bereavement counseling. Patients are seen in a private office setting in Needham, Massachusetts.
Listening, Reflecting, HealingSupportive Genetic Counseling 
Find more info here.
Meet our blog writers!
Jenna Anne
  I write to you as a wife and mother of 4 children. Three daughters and a medically complex son. I live in New England and have a love of fiber arts, music, and most importantly advocating for my children. My background is in Early Childhood Education and Music Education, I have no medical background aside from what I have had to learn on this medical journey. My writing is not statistic based, it’s not guidelines or resources but rather I bring a perspective from the human experience. Often in this world of medical complexity we focus specifically on the patient and the diagnosis and treatments, my writings offer the community a different perspective on how the day to day events are affected by medical interventions. The impact it has on siblings and family. The perseverance it takes to keep a wholesome family continuously adapting and thriving amidst all the challenges of medical complexity. My writings are often raw and unapologetic and speak to the human experience behind the policy, coding and diagnostics of modern medicine.  

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