Have You Been Ghosted?

Maintaining friendships as a Raregiver can be challenging and you may find that you don't have the energy or mental capacity to make plans; sometimes having to explain the ins and outs of your medically complex life just feels like too much. Maybe it's awkward for you to bring up your Rare child's disease because as soon as you do, the relational dynamics change. Perhaps you've actually been ghosted by people you thought were your friends? Maintaining friendships and communicating with friends who don’t have a Rare child can be challenging. It can be hard when friends talk about their child hitting certain milestones, like potty training while your Rare child who is now a young adult is still not potty trained. We had a rich conversation about how to navigate these kinds of situations.

What makes for a good friend?

A good friend is one who can embrace you and accept your life with its full range of unique experiences. They are someone who is able to understand that you may need to change plans at the last minute because an emergency has come up with your Rare child. Or maybe a good friend is someone who can fit into your life, roll with the ups and downs, and make you laugh. True friends are able to talk about the hard things and also chat about the inconsequentials. These are friends you can be at ease with, with whom you can tell it like it is and not need to sugarcoat it.

It can also be wonderful to have friends who are just your friends. They don't need to have children. They just need to get you, be able to sit with you when things are hard, or simply lay down on a blanket outdoors and be quiet together. This is the kind of friend with whom you feel safe, one with whom you can share anything, even though you don't have a ton of stuff in common.

All kinds of friends

The reality is that the goals you have when you have a Rare child are different than when you don't. Oftentimes you're just trying to get through a long weekend without an accident or a trip to the hospital and people who don't have a Rare child have different aspirations.

Friends are people who are able to navigate your Rare child's awkward behavior, like wanting to hug everyone, regardless of whether they really know them or not. You may be trying to teach your Rare child about the boundary of giving people personal space which is appropriate, especially if they are in a young adult body. True friends understand that you are working on boundaries with your child and support you. Respect is a foundational quality in a true friend.

Coming Up Next Week: This is ME! The Power of Being Seen and Heard

As a Rare caregiver, you are the leader of a team of people who support you and your Rare family. In this session, we will discuss what it takes to foster healthy relationships with the professionals and family members who are on your team. Communicating with others who love and care for your Rare child requires presence, acknowledgement and diplomacy rather than people pleasing or domination. Healthy communication happens when both parties feel seen and heard. Please bring your wisdom and your questions. This is certain to be a rich discussion where you will leave with practical tools to help you uplevel your communication abilities.

Please Join Us for the Women's Empowerment Circle every Tuesday at 10am PST.

You may not realize how much you need the Raregivers community until you find it.

Zoom Link: https://us02web.zoom.us/j/84782918881

We look forward to being with you soon.

𓆩♡𓆪 𓆩♡𓆪 𓆩♡𓆪