Disabled adult children of pd parents

[Ilovedogs]

I am a disabled adult child, in my thirties, of two undiagnosed pd parents. I am wondering how other people cope with their care needs as a disabled person in adulthood. Specifically, how do you manage your feelings about asking for help, acknowledging your specific needs as a disabled person, and relying on others for your care? I'm not asking for advice, just for others' experiences with this.

My own experience is, I have had difficulty asking for help, struggle not to feel guilty for needing help, struggle to not take responsibility for my carers needs or find myself putting their needs first even when mine are utterly crippling without help, struggle to put my needs first, worry about losing my care if I ask for too much help or ask for help when carers are stressed, and worry I will be labelled difficult or selfish if I ask for things not normally delivered, eg if I ask for a few more hours care one week when I'm really in need meaning the carer needs to alter her schedule or put my needs above her own. Therapy has helped a great deal but sometimes it's still hard.

What made me think to write this is the current covid 19 situation. I've heard many disabled people's carers are going off work sick, or in some cases are not going to work due to their own decisions about their or family members' risk of getting the virus. A former carer of my own has told all of the people she cares for that she is not going round now until the epidemic is over. I really worry about this for people, but how does this feel if you've had a pd parent? Just the thought of it triggers the unpleasant memory of being neglected by my own parents in times of crisis.

My carer has expressed a desire to cut down her hours and change her days during the epidemic. I am autistic and change is one of the most disabling aspects of my disability. I nearly fainted and had a nervous system collapse when she told me. But the worst of it really is that I feel guilty and ashamed expressing my need for minimal change.

Before therapy I used to completely deny my needs, which at times are debilitating due to autism. Now I don't, but find myself feeling guilt and shame for this, I also feel desolate if accused of being selfish, needy, and demanding, difficult. This is how both my parents reacted to my needs.

Please please no advice, I'm just looking to see if anyone else out there has experienced anything similar. I'm sorry if you have too.

Thank you

[Starboard Song]

No advice.

Just

[looloo]

Hi ilovedogs 

I just quickly did a search for online support groups for adults with autism, and there are results you might want to check out.  I know change is very anxiety-producing, I'm sorry the current precautions are affecting you this way.  Maybe it couldn't hurt to see how an online community of folks probably going through something pretty similar to you could help.

[Wilderhearts]

Also no advice, but some validation and a bit of what I have learned about expressing needs as someone with multiple mental health diagnoses who was raised by an uNPDf.

It's incredibly common as people raised by parents with PDs to not feel entitled to having our needs met, and to not even feel entitled to our feelings.  I've read about "narcissistic family systems," which may (but do not necessarily) have a parent with NPD, but definitely prioritize the parents' wants/needs above the children's.  Growing up with an uNPDf, we were entitled to nothing, including our feelings if they inconvenienced our dad, in order for him to be entitled to everything.  It's a very hard belief system to shake.

Because of dad's entitlement, we weren't allowed to have boundaries or needs.  We were conditioned to mind-read, anticipate his emotional/ego needs, and fill them, or we'd get passive aggression or full-on rage.  There's no saying no or taking our own needs into consideration.  So no healthy, direct communication about needs that gives people permission to say no.  I've since learned that when we honestly express our needs, in a direct respectful way, with other people who have healthy boundaries and communication, they are totally free to decide for themselves to what extent they can help me meet my needs. 

When I say communicate in a direct and respectful way, for me that means saying things like "I'm getting burnt out trying to do 8 hours of work in 7, because I'm not approved for overtime.  Can we revisit the "absolutely no overtime" clause of my contract?" or "I'm really stressed about work right now and I'm not coping.  Can we talk?"  There's no sulking, passive aggression, hinting instead of asking, or other types of indirect communication that create an atmosphere of expectation without actually asking for what we want.  I feel that communicating this way gives people permission to be honest about their needs, consider your request as a request rather than an expectation, and still be true to their own boundaries. 

Expressing your needs honestly and respectfully isn't asking someone to prioritize your needs over theirs.  It's setting up a situation where people are having an honest and open conversation and hopefully find solutions that work for everyone. 

[Ilovedogs]

Thank you very much for all your replies. I can see to some degree I am feeling a need to walk on eggshells with my current carer as I know she puts my needs first and is hinting a lot about what she wants but is not always  saying directly. My uNPD used to do this and consequences of not taking his hints were extreme resentment and projection. I think I need to discuss with my therapist how to handle this.

Thank you!

[Wilderhearts]

That's a great "aha!" moment you had, recognizing that the dynamic with your carer reflects the dynamic with your uNPD'd father in some ways.  Feel free to keep us updated, and good luck!