Ask For Help

Are you willing to ask for help? If not, can you give yourself permission to do so? What is in the way of asking for help? These were some of the questions that we discussed in our Rare Family Dynamics group this week.

As a Raregiver™, you may think that you are supposed to be a superhero who can do everything on their own. You need help.

The shoulds

There is no shame in asking for help. However, you may find yourself thinking, "I should be able to…” You are human and you can only do what you can do. Take time to acknowledge yourself.

Limiting beliefs

Beliefs can get in the way of asking for help. Things like, "All moms can do this, why can't I?”

Maybe you have the idea that you need to offer a babysitter a lot of money. One of our participants described that when her son was young, they offered the babysitter double the going rate, and they still couldn't get anyone to return a second time. This can be discouraging when it occurs repeatedly.

Get organized

As a Raregiver™, it's useful to have a plan and make a list of the things you need help with. You need to delegate and relinquish control. Take the time to consider whom you are asking to do what. Get the right person to help you with the right job.

Compare and despair

A superhero fantasy can really get in the way. You may have thoughts like, “Other moms can go for a jog” or “Other moms can drop their child at a birthday party and run errands without worrying. Why can't I?” Thoughts like these can cast you into a pit of despair. 

Your needs count

It can be helpful to recognize that you have a need. As your rare child or children’s disease progresses, you will need more help. The changes that happen will indicate the need.

Ask for support. There is a powerful phrase I love to use when asking for help which is,

Would you be willing to…? Using this phrase gives the person you're asking a choice.

A gift

Remember that asking for help can be a gift to someone else. It gives them a chance to serve and even feel a sense of purpose. For example, if someone offers to set up a meal train for you when you're spending lots of time at the hospital, leaving you very little time to cook, accept their generosity. Receive what people are offering.

A suggested practice

Look at your life, make a list, see what you need, and ask for help. It does take practice and perhaps there will be things for you to feel. Feel it all and ask anyway.💜

Coming up this week: Sustainable Self-Care -- Remembering Yourself

As a Raregiver™, it can be easy to lose yourself in caring for your child or children. You may experience a radical shift in your perspective on life and your identity as other than the mother of a child with a rare disease may disappear. When this happens, self-care often falls away or drops to the bottom of your impossibly long to-do list. 

Priorities shift and you dive headlong into learning everything about your child’s Rare disease as well as managing their care each day. Please join us for a conversation with other Rare caregivers who are discovering ways to care for themselves and their Rare families. Bring an open heart and trust that you have wisdom to share.

Join Us

You belong here. Come as you are. Your presence is a contribution.

Zoom Link: Click Here

We look forward to being with you,

Padma