If you are now a caregiver to someone with a rare disease such as porphyria, well take some deep breathes, learn, listen, gently respond, and take time for YOU.
If your not well how can you care for someone else?
If you do not know how to care for some with porphyria, can you ask them, where can I learn about your type, how does your type differ than others, do you suffer in pain, and what is the best way I can actively assist you?
These are things a good caregiver needs to know. So do your part to not complain as a patient, but what can help YOU!
Caregiver's check out: porphyriafoundation.org