I recently spoke with a patient who stated that his marriage was under a great deal of strain – which is highly understandable as the significant others of patients are the caregivers and are often in the line of fire, so to speak.
This was not the first time a wife or husband had confided this to me. Helplessness can cause patients and/or their caregivers great despair – to which wanting to run away is an understandable reaction.
Patients experience pain, embarrassment, and uncertainty when afflicted with P/P or other rare diseases.
The caregivers can empathize, the caregivers cannot truly feel what the patients are experiencing.
Everyone who is a caregiver tries his or her best to be supportive. Every patient who is undergoing this challenge is bound to be depressed and scared at times. Every family member may feel helpless most of the time.
This is the time to reach out and ask for guidance. Finding support groups is easier these days due to social media. Pemphigus Vulgaris is only one of 7,000 rare diseases that exist today and there are sources of information for each one of them. Search the Internet and contact local support groups. Check out the link given here for caregivers (It’s one of the very best!).
http://www.caregiveraction.org/