Support Groups for Spouses of those with PNE

[QuietQuestion]

Hi,

I sympathize with all of the posters on here. I am the wife of a man who has been recently diagnosed with PNE and have witnessed his suffering and pain over the past 5 years. It has broken my heart watching his journey and struggle finding answers to a condition that was long deemed "mental". I also sympathize with those who find that naming the condition does little to assuage the pain.

My question is, are there any support groups for the spouses of those suffering from PNE? If not, do you feel there would be interest/value in creating one?

Many times it can feel lonely and confusing as the spouse of a partner going through this, especially if there are no answers or effective treatments. The severe impact this condition has on a marriage is real, and I feel as if the medical community may not realize that PNE has real impact on the families of those afflicted. We hear, "Be understanding! You must understand the depths of this condition! His anger situation and is not directed towards you, so be patient!" , but do not hear, "How are you coping? How has your relationship fared? Are you doing anything to take of you while you support your spouse?"

The spouses who are coping with the sudden lack of intimacy, both physical and emotional, the emotional distancing from their spouses, the days where his/her frustration and anger are directed towards you and your kids leaving your feeling at fault/the trigger of her/his pain, and the days where you are reminded that the future "cannot be planned" - there is a large amount of loss without discussion about how to support the spouses who are trying to physically care for their wife/husband, taking care of the kids, and working to support the household.

If you are aware of spousal PNE support groups, please message me.

The more we can support those who are afflicted, along with supporting those who care for them, the better wrap-around support we can create to help those with PNE.

Thanks!

QK

[Violet M]

QK,

I'm sorry, I don't know of any spouse support groups. We had talked about creating one on this forum awhile back but decided against it because there was no way to make it for spouses only.

When I was in the worst of PNE my husband was very supportive and really, I don't know how I would have gotten through it without him but I know it was extremely stressful for him. It sounds like you are experiencing a tremendous amount of stress too.

Violet