As a family caregiver of a love one with a rare disease, you can feel overwhelmed and hardly know where to start. That’s not surprising. Caregivers in the rare disease community face some exceptional hurdles. Rare disease caregivers often face a higher burden of very intense caregiving activities. You may even have faced the special challenge of having to be the one to educate your medical providers and others about the rare disease itself. So you need information, education and tools that can help you manage the many daunting tasks you face!
Take Care of Yourself
You have heard this message time and time again: As a family caregiver, you must take care of your own health so you can be strong enough to take care of your loved one. But we know how hard it is for you to find the time. This is especially true of rare disease caregivers because caregiving for your loved one is often needed around the clock. Thankfully, there are tips and tools available to help you avoid burnout and maintain some sense of balance in your life!
Complex Emotions
As a caregiver for someone living with a rare disease, you are not alone. An estimated 350 million people worldwide suffer from rare diseases – including 30 million in the U.S. and another 30 million in Europe.
Maybe your own personal caregiving situation started slowly – when your wife was diagnosed with adult Pompe’s disease, for example. Or maybe it happened all of a sudden – when your child was born with Tay-Sachs or another rare disease. But however it began for you personally, there are millions of other rare disease caregivers just like you facing the same challenges you are!
Being a rare disease caregiver is not something you wanted. And nothing can really prepare you for the emotional rollercoaster that comes with being a caregiver. On many days, you will probably feel overwhelmed. Many family caregivers in your situation also experience feelings of anger, depression, and guilt.
Just know that all these feelings are normal. And know, too, that for many people caregiving can ultimately be one of the most rewarding experiences of their lives!