Saturday, November 3, 2007

Stop saying that

This has been bothering me for awhile now, but I could never quite articulate why. I think I can finally put it into words. Ever since it first became obvious that I was sick and getting sicker, I expressed deep dismay and frustration about it.

I get absolutely despondent because I want to be normal--I want to function among people without having to watch every word coming out of my mouth, or every blip in my mood, or any potential misinterpretation of the things happening around me. I hate it when I try to think but can't latch onto one thought, or when I feel so anxious I can barely stand to be outside of my house. More than anything, I hate it when my brain just stops processing everyday information and I can't work, write, speak, or read without tremendous, not-always-successful effort. Most people do not live with these issues, nor do they have to self-monitor so closely. They do not take six expensive medications every day. This is a very real and exhausting part of my daily life.

I have tried many times to explain to the people who know me just how frustrated and sad I can get because of the things my brain does or doesn't do on a regular basis. I always think that if they could understand how the disorder feels from my internal perspective, perhaps they'll see why I feel so overwhelmed with sadness and frustration. They'll see why I say I want a new brain. They'll see that I need support and empathy.

Instead, the answer I usually get is: "There's nothing wrong with you. You're fine. You do better than most people who don't even have a disorder. This doesn't affect you as much as you think it does."

And they have this insight based on...what? I suppose that part of the perception disconnect lays in the fact that I am, for lack of a better term, high functioning. I go to work, I accomplish a lot, I'm usually articulate, and I do a good job of masking my own reality. But it is still my reality. So...what? People don't believe me? I cringe every time I hear it. "There's nothing wrong with you. You're fine." Great. Have they forgotten so quickly what it was like before medication and therapy? Are they trying to make me feel my desperation and frustration are unjustified?

It doesn't make me feel better. Whenever someone says there's nothing wrong with me, I actually feel...
  • they are being dismissive and insensitive;
  • I have no credibility
  • this is meant to avoid any further discussion of my woes
  • they don't consider my disorder to be a legitimate health problem or even a problem at all
It's just so goddam condescending. I don't find this "reassurance" comforting at all and I wish everyone would stop saying it.

Perhaps I want something like this..."I'm really sorry you feel that way, May. It must be frustrating to feel those deficits. For what it's worth, you do such a good job of persevering and working past it, that really, nobody except you can even tell something's going on."

Dream on.


Spilling Ink said...

Yes, May, I think people are saying those things to you as a way of pointing to your good functioning. I understand this feeling dismissive and disbelieving, though. Sometimes my husband says similar things to me. The thing is, maybe people are trying to make us feel better, but they have no idea how difficult our lives are FOR US. Sometimes my shrink even does that, and coming from him - it can make me angry. I get his whole thing; trying to 'normalize' the situation, but there ain't jack-freakin'-shit normal about this. And I have to live in it. When he is finished talking to me, he goes back to his own world and doesn't have to concern himself with the confusion and terror that I have to slog through every day just to get by. Fine for him to say it's normal. Holy shit, I think I'm a little angry right now. This feels to me like I am coming to him for comfort and he is refusing to give it because I should pretend that this is normal instead of needing support. That reminds me of my mother. "Let's just pretend everything's okay." Bitch.

May Voirrey said...

I think your pdoc and my pdoc went to school together, and your mother and my mother read the same parenting book.

I agree--I mean I know in my heart that when people are casually offhand about the very thing that shapes my entire freakin' life they probably are trying, in their own way, to say I seem to be doing OK. the thing is, though, that nobody ever actually asks me if I'm doing OK. They just don't see how hard it is to act socially integrated when you really aren't because of everything that's going on your head. Grrrr.

I don't begrudge the pdoc his remarks. To him, everything is relative, and relativey speaking, I'm sure I'm nothing ompared to what he sees on his hospital rounds. I also know that in his case, that IS how he speaks when he's trying to be encouraging.

Have you considered a course of EMDR? It won't work for what I have, but it's been shown to work really well for repressed memories and trauma.

There should be some kind of sensitivity therapy for anyone who has to interact with people who are differently wired.

Spilling Ink said...

Here is the whole bizarre story behind EMDR for me. Hold on to your hat, cause this is a bit weird. I am SO incredibly untrusting and socially retarded, that I cannot actually go to see a therapist in person. I talk to him on the phone and he lives waaaay over there by you. This is the only way it feels safe for me to have a therapist. He can't 'do anything to me' this way, you see. I just can't deal with it in person. It's too much. It feels threatening and overwhelming. If I ever did manage to go see a therapist in person, it wouldn't do me one damn bit of good, because the only thing I would be able to do, is to show up, smile, act like nothing much is wrong and maybe talk about the weather and how cute my kids are and how hard it is to stay on top of the laundry. I suppose I would get a few sentences in about my dislike of anxiety, which I would, of course, minimize. I'm sure the shrink would offer up a few suggestions, which I would pretend had worked for me and then I would leave with my fake cure and go home and rot. My therapist suggested EMDR to me (he doesn't do it and he's too far away), but I just CAN'T. He said he might attend a workshop. I said I might come to see him. I'm not holding my breath, ya know? There is no way I could have something like EMDR with anyone except him. Even then, I've never laid eyes on the man, I've only seen his photograph (and I suspect it is old). I might run away, even from him, if I were confronted with his physical presence, I just can't know for sure and I can't always control these things. May, I can't even go to the doctor. I made the appointment and ended up screaming and crying, unable to sleep and wanting to down a bottle of pills. -- But I'm really not so bad off, you know. There's nothing wrong with me. Stop saying that, indeed.

Dinah said...

Hi May,
I'm a first-time visitor, seeking insight into Bipolar to help my son-in-law. I have to tell you that your blog is helping me get a sense of my son-in-law's pain. You may not realize it, but you are helping to fight the very thing that causes you so much pain by sharing what is going on inside your head.

Thank you.

May Voirrey said...

Welcome to my blog, Dinah! I'm happy to know that you find my ramblings productive and helpful. Mostly I feel like I'm spinning off tales in Cyberspace where they end up in a black hole.

If you go back, back to the older posts--start at the very beginning, you might find the kind of insider's perspective you're looking for.

Be kind to your son-in-law even when it's a challenge. He needs to know he's not alone and that your concern is sincere.

Come back again. I write almost every day, although many times just about life in general when my brain is full. Hence Brainucopia.