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Taking care of yourself

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.

Balancing work and family time

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:

  • Meet the medical and emotional needs of your child
  • Be there for your other children
  • Stay engaged with your spouse
  • Maintain your own health and wellbeing
  • Manage the demands of work and career

Next, use this six-step process to help you find a formula that works for you.

Step 1. Define your child’s caregiver needs

  • Consider the different kinds of help your child will need in the short and long term.

Step 2. Identify potential caregivers

  • Consider possible candidates among your child’s teachers, family members, friends and babysitters.

Step 3. Make a resource inventory

  • Make a list of resources already at your disposal, such as:
    • Flex-time, telecommuting or other work arrangements
    • Benefits such as compassionate leave or health insurance that covers your child
  • Identify additional resources in your community, such as:
    • Health professionals, counselors, educators, support groups, parents of other children who are ill

Step 4. Negotiate workable roles

  • Discuss your needs with each of the sources of support you have identified in Steps 2 and 3, then negotiate the extent and type of help each is able and expected to provide.
  • Negotiate a flexible work arrangement with your employer, if needed.

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.

  • The key is to try to build some flexibility into your resources so that no one person or support service is absolutely essential.

Step 6. Revisit your plan as needed

  • Re-evaluate and adjust the plan you have in place as often needed, as your child’s health evolves, your work demands change, and so on.

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.

The blame game

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:

  • Pain
    Are you fighting or getting angry with each other for no apparent reason? Are you hiding a bigger issue that you are blaming each other for?
  • Awareness
    Be aware of when you’re blaming or accusing, even if you’re doing it in your head. And why. If you can catch yourself sooner, you can let it go and avoid starting a fight.
  • Take Responsibility
    This doesn’t mean you need to take responsibility for your child being sick;
    it means that you need to take responsibility for how you are handling it.
  • Communicate
    Tell your partner what’s been going on and how you feel about it. Consider speaking with a couples counselor. Having a third party to speak to can help to solidify your relationship and get you back on the same track. Once you’re both making an effort, you’re well on your way.

Tim’s Story

A story about a young boy with an autoinflammatory illness

Learn more
Tim's story

NPR/ACZ885/0008E