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Hello,
I have a teenage son who has agoraphobia. I'm trying to help him the best I can and I thought I'd ask for first-hand experience. What kind of things do you wish people, particularly family members, understood? What kind of things do you wish they'd do? Or what kind of things are helpful/ not helpful? Can be anything.
Thanks
I know it's an old post, but I got irritated by this recently so...
It surprises me how many people don't understand the phrase "I'm not going anywhere right now." Agoraphobia completely keeps me at home. I have panic attacks over driving AND over being driven. They say "Oh, I'll just drive you." No, that's not good enough. It's not me behind the wheel that's the problem. It's the idea of going away from my safe zone, but they still keep pushing me to ride with them no matter what I say. Or they say "We'll just blindfold you." Um, no. I understand every agoraphobic is different, but people seem to make their own assumptions no matter what I say. I wish they would take a moment to understand what agoraphobia means to me. I'm not yet to the point where I can joke about it, so the blindfold thing isn't really funny.
The biggest thing I want friends and family to understand is that I need people. It gets extremely lonely being home all the time, but at the same time, having people over can make me very anxious. So, yes, I want you to visit me. But depending on how I'm doing that day, it may be difficult for me if you stay long. Please don't take offense to that. I don't really WANT you to leave. I just need you to. Or else I need you to be patient while I ride out the anxiety. You may have to control much of the conversation.
Saying "Just don't worry about it" when I'm worried about something minor is empty, often annoying, words. I understand you want to help and don't know how, so you say whatever comes to mind. But logically, I know not to worry about it. I'm already trying to talk myself down from the worry, but it's not something I can snap out of in a millisecond just because you told me to.
Finally, I need patience and open communication. I don't want people behaving like they're walking on egg shells. Don't keep me out of the loop of what's going on because you think I'm fragile. Sometimes, it's nice to know other people have problems, and hearing about them can get me out of my own head. But I also don't need extra stress. I feel guilty already, as if I'm a burden because I need others do go out and do so much for me that I used to do myself. Try to be patient and demonstrate that you love me, even if you're frustrated.
That's what I need to tell family.