The Invisible Cost Of Caring For A Child With A Health Condition

By Marie Holmes
Sep 19, 2022, 02:24 PM EDT

A recent HuffPost article, The Invisible Cost Of Caring For A Child With A Health Condition, discusses what our PANS community knows all too well, that parents often suffer from depression and PTSD. If you are a caregiver in the PANS PANDAS community, please join the ASPIRE Facebook Group, which is open to caregivers and adult patients.

In summation, while resources are focused on the child, it is important to support caregivers.  But knowing it is important is not the same as being able to make that happen. Often parents put their child’s needs before theirs or if they try to practice even a small amount of self-care, mustering the energy to do so is often not found. Also, caregiving is ultimately isolating as friends with without children without health issues simply can’t or don’t want to put themselves in their stressed-out friend’s shoes and provide support. So, caregivers often find support from parents in the same shoes. Also, there is a high rate of PTSD in the caregiver population. The study’s findings show that parents experience trauma alongside and sometimes on behalf of their children in an effort to shield them from many of the stressors that go hand in hand with many disorders.





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