Are your friends Good friends?
What are the qualities of a good friend? What does it mean to be a friend to yourself? These are some of the questions we contemplated in our Rare Family Dynamics group this week.
Essential qualities
Some qualities of a good friend include being kind, curious, trustworthy, attentive listeners, showing up without an agenda, and not giving unsolicited advice.
As a Raregiver™, it's important that your friends check-in and ask you how you are. Friends make an effort. To maintain a friendship means you need to invest in the relationship.
To educate or not to educate?
Have you been under the impression that it was your job to train all of your friends and educate them about your daily life? In fact, it's not. And, maybe you’ve found that they just don't get it which can be very frustrating.
In rare circles, people do understand without you needing to explain yourself.
Join us. Find your community.
Be discerning
Be discerning about who you do and do not let into your life. Oftentimes people who do not have a Rare child compare your child to their neurotypical child. The saying, "compare and despair" applies here.
One member of our group today said she had a few friends who did not understand her life at all when they told her that their solution to "healing" her rare child was to "pray it away." She eventually told them she could no longer be friends with them, and that she found it offensive that they were in such denial of the fact that her child had a rare disease without a cure.
Painful platitudes
You may have friends or community members who try to be helpful by saying things like:
Everything happens for a reason
God has a plan
God will find a way
What happens inside when you hear this? Perhaps you find yourself shutting down, especially if a good friend says things like this to you. In our group today, there were several people who found that although they are deeply rooted in their faith, they did not feel welcome in their place of worship. Do not give up. You will find a community where you and your Rare family feel fully accepted.
Sometimes well-intentioned, loving people may miss the mark by quoting "religious platitudes" rather than looking into their hearts, seeing what's needed, and responding.
Listening & Validation
Perhaps what you really need when you're having a hard moment is acknowledgment and validation. It's likely that you simply need someone to listen and give you a hug.
A book for you
One of our members today mentioned the book, "When Bad Things Happen to Good People" by Harold S. Kushner. You may find it to be a helpful resource.
You belong
As a Raregiver™, you belong here. We gather from across the world to support each other. Your presence is a contribution.
Coming Up This Week: Team Play in Your Rare Family
Being in a rare family means you are on a team. You are in it together and share a common vision and goals. This includes relationships with your partner, children, healthcare professionals, friends, co-workers, etc. Together we will explore the elements of a great team. How can you be the best team player possible? What does it take to lead your team? In order to support your rare family, you need to have a healthy team. Please bring your experience leading your family. We will share our collective wisdom and support one another. Let’s cheer each other on!
Zoom Link: https://us02web.zoom.us/j/88974713173
We look forward to being with you,
Padma
