Having a child diagnosed with a rare disease or chronic illness is life changing. Discussions about potty
training, the soccer schedule, prom or ACT testing no longer hold the same interest or relevance.
You feel anxious, lost and alone. Doctor appointments, medical tests and tedious phone calls with
the insurance company consume your time, not to mention the changes that may be necessary to deal
with the rare disease. I’m so sorry your family is embarked on this journey but I’m here to tell you that
you are not alone. Over time, you will adapt and this will become your ‘new normal’.
Welcome to the world of chronic illness
The club nobody wants to join.
A group of incredibly kind, supportive people
who understand your life.
People who will help you,
who will laugh and cry with you <3
So how do you find other people and connect with other families facing similar challenges? Here are three
ways to help you on your journey to find the support system for you and your family when facing chronic illness.
3 Ways to Find Support
Ask your doctor
Hospitals and clinics offer a variety of support groups. These can range from pain management groups
to disease specific groups. Local support groups are created and run by other parents or families
dealing with similar challenges. If you are unable to find local support through an organized group,
you can give your name and contact information to your doctor to offer to have others in similar
situation contact you.
Patient Advocacy Groups
Most diseases have at least one non-profit organizations specific to that disease. Organizations’
missions can be to further awareness, provide disease specific information to patients (testing and
treatments), educate the medical field, raise money for research and/or advocate for recognition and
treatment options. Together these organizations provide a wealth of information and support that is
accessible to you whether it be on-line through their website or in person, at local support groups or
a patient education conference.
Social Media and Online Options
Social media has been a blessing for families facing rare diseases. A quick search on Facebook will turn
up a variety of groups for each disease. There are groups for parents, teens, single parents and even
combinations of diseases. Non-profit patient advocacy groups often have a facebook group page. It is
easy to join a group to try it out and see if it is the right choice for you. Unfortunately, it is important
to be careful about what personal or medical information that you share online.
As noted by MitoAction.org, “Child protection teams now routinely turn to social media, online support
groups or family blogs for evidence against family members in Medical Child Abuse cases”.
See Guidance for Social media and online interactions for more recommendations on safely sharing
on social media and other online interactions.
Prior to Facebook, Yahoo groups provided support and information. Unlike facebook, the discussions
were held in a forum where information was preserved making it possible to search previous topics.
Unfortunately, there are not as many active groups since the facebook groups have become more popular.
Here at Healing Hugs Haven, our community is focused on helping families living with chronic illness.
It is a place to learn about and share resources.
You will find links to current research, plus support and help for living with chronic illness.
Click here to learn more about our Healing Hugs Haven community.
Reaching out to others makes your load lighter
and your journey less lonely!
Please share your favorite ways to connect with other families in the comments below!
With healing hugs,