Caring for someone with a rare disease can be an around-the-clock commitment, leaving caregivers with little time to attend to their own needs. Forty percent (40%) of rare disease caregivers report having fair or poor emotional or mental health and thirty percent (30%) report having fair or poor physical health.1
However, a caregiver’s well-being is critical for their sake and that of the person they care for. Although caregivers likely realize how important it is to take care of themselves, it may not always feel like something they can do.
Fifty eight percent (58%) of caregivers find it difficult to take care
Did you know most rare caregivers reported spending 40+ hours a week caring?1 That’s a full-time job! Here are a few tips for all the rare caregivers out there.
- Connect with other caregivers. Talking to other people who share similar experiences can be a powerful way to cope with stress and anxiety.
- Prepare and educate others to care for your child to help you get the breather you need.
- Find a stress-reducing activity you like and try to make time for it or incorporate it into your routine; exercising, meditating, going for a walk, making art – whatever works best for you.
- Do what you can to stay well, even if it’s just one small activity a day until it becomes a habit – eat a balanced meal, go to bed early to get enough sleep, or take a few deep calming breaths in a quiet place.
- Get annual medical check-ups for yourself. It can be easy to focus on your loved one’s medical appointments, but make sure that your calendar also includes visits with your own healthcare team.
Remember, it’s important to take some time for yourself because it can be an important way to de-stress, ultimately helping ensure you recharge your energy and focus.