Caring for the Caregiver : Living with "Rare"

 Living with "Rare"

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



Caring for the Caregiver

by RNE submissions on 01/07/18

By Joanna Mechlinski

January 2018

When a loved one lives with a rare disease, it's easy to get caught up in his or her needs. After all, a person living with a serious disease or disorder may require countless hours for doctor's or hospital visits, medication or treatments, and assistance with day-to-day tasks from household chores to personal hygiene. The caregiver may also become involved with advocacy for the patient's needs or recognition of the disease itself, be it among policymakers or insurance companies. Your family member or friend's needs may become all-encompassing, both physically and mentally. That's why, with the start of a new year, it's important for caregivers to resolve to focus on themselves, too.

According to the National Alliance for Caregiving, some 30 million Americans live with a rare disease or condition. Many receive unpaid care from family or friends – often as many as 20 hours per week, in addition to their outside jobs. These caregivers are tasked with not only the person's physical needs but also emotional, as there may be difficulty with finances, in obtaining medication or adequate medical care. For some, their disease's symptoms may be unpredictable and the longterm outcome may be uncertain.

The Caregiver Action Network stresses the importance of accepting help from others. In giving yourself time away, you will maintain your physical and emotional wellbeing, so that you will ultimately be better able to care for your loved one. Don't be afraid to reach out to others, even for a few hours or a specific task. Seeking respite is not a sign of weakness! In addition, CAN emphasizes networking with other caregivers. Not only is it a chance to vent and share ideas with others who have similar challenges, it's important to remember that there are many others just like you.

To connect with others and find more tips on caregiving, you can Google disease-specific organizations or check out sites like National Organization for Rare Disorders (NORD) at rarediseases.org, Caregiver Action Network (CAN) at rarecaregivers.org or caregiveraction.org

Comments (0)


Leave a comment


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.  

Learn, relate to and enjoy stories from our bloggers who all have been touched by rare and complex diseases personally and professionally!!
Please scroll to find all the fabulous contributions!