Support – Importance of Finding That Connection with Others Who “Get It” : Living with "Rare"

 Living with "Rare"

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



Support – Importance of Finding That Connection with Others Who “Get It”

by RNE submissions on 10/06/18

By Joanna Mechlinski

 

No matter who you are or what your life is like, chances are you’ve longed to connect with someone who can understand you. Whether you’re passionate about a particular hobby or the parent of a certain-aged child, there is no feeling like the one you have with others who share your situation. Sure, your family and other friends may say they understand; and perhaps they really do. But the bond between two people undergoing similar circumstances is undeniably special. That’s why it’s so important for people with rare diseases – and their caregivers – to find support.

Even better, in today’s world you can find a group that suits your needs. If you prefer going out and meeting with people face to face, chances are, you can find that. If you prefer (or need) to stay home, or if there aren’t many members in your local area, you can find a group online. Now that the internet’s been in common use for a good 25 years, you can even have your pick of online groups – as with anything else in life, there are different variables that may make one group a better fit for a particular individual than another.

One important point to note: Take everything you read or hear in your support group with the proverbial grain of salt! While they can be a lifesaver, both emotionally and in terms of knowledge (you may learn about lesser known treatments or “hacks” through the experience of others) you should never take the things you learn as 100% without further research or speaking to your doctor.

So go out and connect with someone today!

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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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