If your child has an autoinflammatory condition, you probably find yourself putting their needs first and your own second, or even third or fourth behind family and work. Over the longer term, this can lead to "caregiver burnout" and even resentment. It is important to make time for yourself and to work towards striking the right life balance so that you, your child and other family members will all continue to thrive.
Juggling the demands of work and home life is hard enough, but when you are caring for a child with an autoinflammatory disease, it can be even harder. How can you find the right balance between work and family needs?
Start by acknowledging that you can’t do it alone. You need help in order to:
Next, use this six-step process to help you find a formula that works for you.
Step 1. Define your child’s caregiver needs
Step 2. Identify potential caregivers
Step 3. Make a resource inventory
Step 4. Negotiate workable roles
Step 5. Implement and adjust
Once you have begun using your sources of support and other resources, chances are you will also need to develop a back-up plan to use when someone is unavailable or your own schedule changes.
Step 6. Revisit your plan as needed
Following these steps can make all the difference between just coping and being on top of the situation. That’s why it makes sense to do your homework now, and to put some time and effort into finding the support you need.
Having a plan and the resources that go with it will go a long way toward helping you find a life balance that works for you.
When a child is diagnosed with a rare disease, one of the first things parents wonder is: Did I cause this? Is this somehow my fault?
Parents of children who have been diagnosed with rare conditions can feel guilty for a lot of different reasons. If the autoinflammatory disease is genetic, they can feel guilty for “passing on bad genes” to their child. Or they may blame their partner instead.
When it comes to things you can do to mess up your relationships, blaming the other person for something is at, or near, the top of the list. Here are four things to consider if you find yourself playing the blame game: