How to deal with my severe phone phobia

[Aspigander]

Here's an excerpt from a post I posted in Peg's thread about Allie's speech therapy:

You know, it reminds me of when I was at the training center I've talked about. With my phone issues. The occupational therapist got the idea that I could use a TTY like what deaf folks use. There are even relay services online so you don't need special equipment. This was, for what it's worth (probably nothing), about a year prior to my Asperger's diagnosis. And while the rehab counselor/case manager at the center (eventually) allowed them to teach me how to use it, most of the folks working with me on my phone issues really seemed to frown upon it. The OT, one or two other staff, and a deaf-blind student with a 'take no guff from the naysayers' attitude all taught me how to use TTY and an internet relay service. But I had so much anxiety, I'm one that does take guff from the naysayers because I'm always so afraid to defy authority (perceived or otherwise). It worked okay, it got me the information I needed when I used it. But you know what? Most there were so bound and determined to drill into me that the VERY MOST important thing was that I'm actually talking, with my own voice and my own mouth, onto the phone, and chastised when my anxiety would cause me to hang up...I think it inadvertently just made my whole phone issues worse. It's been drilled into me that while I know how to use the relay thing, I really *shouldn't* even if it gets me the needed information, because I can hear just fine and it was intended for those who can't. And as for trying to work on desensitizing myself to using the phone, the severe anxiety keeps me from even getting started because it's been drilled into me that if I'm anxious, I'd darn well better not hang up no matter what, and if I do I'd better call back immediately, and with that kind of anxiety, if hanging up isn't okay, I might as well not even start, you know? I'm not saying it would be a bad thing for me to use the phone, but my goodness the emphasis put on that being top priority over getting needed information (and of course being chastised if I fail to get the needed information), well, I think it just made my phone anxieties a thousand times worse.

One of the things I learned at the training center (somewhat on the sneak), is to use a TTY, or, there are services online where you go through a relay operator without any special equipment (just computer/internet). These types of services were originally used for the deaf/hard of hearing, then started to be used by the speech disabled. Because of all my oral issues I was born with I definitely qualify, or definitely used to qualify, for being speech disabled. But I did have speech therapy at the training center, learned to articulate more clearly (what they determined was happening was, because of the cleft palate I had (and still have a bit of even after several repairs), when I was little and first learning to speak, I couldn't regulate air pressure up in my mouth where we speak, but I could back in my throat so was trying to speak from my throat), and pretty much everybody seems to understand what I'm saying, so I don't know that I qualify for speech disabled anymore.

What hinders me is the SEVERE and paralyzing anxiety when it comes to using the phone. As much anxiety as I have when, say, my mental blueprint collapses, I would have to say one of the worst things for my anxiety, if not the worst thing for my anxiety is the prospect of using the phone. Even calling my vet's office, which I've gotten semi-okay with, sometimes I won't know what details are relevant and what details aren't so I've been known to confuse the receptionist there once or twice, so that's another problem with phone use. I'm not sure if it's strictly because of my not being good at filtering out irrelevant details with asperger's, or if it's the phone anxiety. I'm guessing it's the former compounded by the latter. I guess when I got semi-okay with the vet's office, my need to get help for the cat that had problems at the time superseded my anxiety just enough that I was able to do it. That's really the only 'unsafe' (logically I know it is safe) place I seem to be able to muster the gumption to call, and even then I really prefer if my mom does it because there is still some anxiety there.

When I said that the phone is one of the worst things for my anxiety (ranking up there with leaving my apartment, the phone anxiety may even rank a bit higher, and that's saying something!), I'm remembering the episode I'd mentioned here where my mom tried to call MSU neurology, I was right there listening, I could tell from her side of the conversation that they were wanting to talk to me (because of HIPPA), at least to have my consent to talk to her. Well, I bolted, started hyperventilating, and doing so to the point of wheezing/gasping for air. I'm not asthmatic but I'm sure it seemed from the outside like I must be! It was loud enough that the person at MSU neuro heard and accepted it as 'consent' (my therapist had said it was fortunate she was understanding and didn't still try to make me come to the phone. I mean, that sure would have been the end of that phone call because at that point there was just no way). I get very anxious about things, and sometimes do hyperventilate, but it is rare that I am to the point of gasping for air because of the anxiety. I think my phone anxiety has actually gotten worse, because even at the training center, when compelled to make phone calls, not hang up no matter what, and call right back if I did hang up, I wasn't to the point of wheezing. I'm guessing the trauma from the ordeal probably just compounded my problem. Yeah, I can speak more clearly, but the anxiety gets so bad I can't seem to even get started.

And I know it gets irritating for my mom to depend on her for my phone calling needs. So I'd like to do something about it.

Peg's post last night (to which I replied to with the above quote) got me thinking. I had asked if there were plans to get Allie speaking, and she said while she'd love that, they need to get her communicating however possible. It got me to thinking of my phone issues. So we go back to the relay system that is used by the deaf (which I'm not) and the speech disabled (not sure I qualify anymore). That might be a good way for me to use the phone...I can just type what I have to say, kind of like I'm typing this post. While the OT and a couple others at the center encouraged this, the general consensus seemed to be that the most important thing was to get me speaking on the phone regardless of the anxiety, and by the way, do not under any circumstances panic and hang up (my mom has said this as well), because that's just rude. And if I did panic and hang up, I was urged to call back immediately (only compounding my anxiety). So it seems the general consensus was that I should use the phone, on my own, no matter what.

If I did start using some kind of relay service, I do have a couple concerns. Well I probably wouldn't use it for my vet's office, they might think that was strange. I'd be reluctant to use it there or my ophthalmologist's office (which my mom calls when need be), because those places both know I can hear and might find it strange. And, just in general, I'm afraid anyone I call in that manner will assume that I am deaf. Also, I'm worried that if, in the course of a conversation, the relay operator finds out I'm not deaf/possibly not speech disabled, they may end the call and/or I might possibly get into legal problems.

Perhaps those concerns can be worked around somehow.

Anybody have any ideas on what I should do?

[peglem]

I think you should just use it. The technology was invented to improve the communication and lives of people who have trouble communicating by phone. The fact that the logical group to market to is the hearing and speech impaired does not negate your need for the technology. As far as people thinking its strange...so what, they probably already think its strange fopr your mother to call for you anyway. And think of the possibilities...not just for making doctor's appointments, but in getting food delivered to your apartment- although some food delivery places have online ordering, I think it has a real possibility for making your life much easier, and making you feel more confident in dealing with the outside world. I can't see how it would make a difference whether people think you're deaf when you use it or not.

[Aspigander]

The fact that the logical group to market to is the hearing and speech impaired does not negate your need for the technology.

So you don't think it would be illegal for me to use it?

And what should I do when faced with someone who thinks that the most important thing is that I use the phone normally?

[peglem]

So you don't think it would be illegal for me to use it?

And what should I do when faced with someone who thinks that the most important thing is that I use the phone normally?

Do you think there is a law prohibiting the hearing people using this device? I seriously doubt that. That would be seriously crazy.

You most likely will not have to deal with people who think you need to use the phone normally. And even if you do, just say you're working on it and using this until you master the other, which is not exactly untrue. They have no right to judge the extent of your disability or the solutions you employ anyway, so tell them something rude if you'd like. Its really none of their business and you don't have to tell them anything. Why should they object or care that you've found a way to do something for yourself that you used to have to depend on others for?

[Aspigander]

Do you think there is a law prohibiting the hearing people using this device? I seriously doubt that. That would be seriously crazy.


Well, it would be. But I do kind of wonder, since it was created for the deaf/speech impaired, not for the phone anxious. Of course, I suppose it could be argued that my severe anxiety was contributed to by a speech impairment.

You most likely will not have to deal with people who think you need to use the phone normally. And even if you do, just say you're working on it and using this until you master the other, which is not exactly untrue. They have no right to judge the extent of your disability or the solutions you employ anyway, so tell them something rude if you'd like. Its really none of their business and you don't have to tell them anything. Why should they object or care that you've found a way to do something for yourself that you used to have to depend on others for?

Well, I'm kind of thinking if I get in a situation where someone in authority tells me I should use the phone normally. Like when I was at the training center, while some encouraged it, a lot of staff seemed to frown upon it because I *should* use the phone normally, especially since with speech therapy I *can* speak clearly. So I'm mainly talking about if I ever get in a situation again where someone in authority tells me that I can hear and speak clearly, and as far as my phone anxiety I should just "get over it" and use the phone normally.

[peglem]

Well, it would be. But I do kind of wonder, since it was created for the deaf/speech impaired, not for the phone anxious. Of course, I suppose it could be argued that my severe anxiety was contributed to by a speech impairment.



Well, I'm kind of thinking if I get in a situation where someone in authority tells me I should use the phone normally. Like when I was at the training center, while some encouraged it, a lot of staff seemed to frown upon it because I *should* use the phone normally, especially since with speech therapy I *can* speak clearly. So I'm mainly talking about if I ever get in a situation again where someone in authority tells me that I can hear and speak clearly, and as far as my phone anxiety I should just "get over it" and use the phone normally.

Oh, just do what you need to do to help yourself and don't let worries of extremely unlikely scenarios impede you. Here's what you do if you run into these "authorities": You recognize that they have no authority over you now and you proudly announce that this device is the best thing that ever happened to you! In fact, lay your worries aside and the first thing you do with the device is dial them up and let them know they were wrong all along and they wasted your time trying to teach you to use the phone!

But, anyway, I just don't see how you're going to accidently encounter these people while you're using TTY anyway. Wouldn't you have to call them in order for them to know?

[Aspigander]

Oh, just do what you need to do to help yourself and don't let worries of extremely unlikely scenarios impede you.

LOL I guess you're right. Of course, I am the queen of worrying about extremely unlikely scenarios.

I guess I'm not so worried about accidentally running into these folks with the device. I'm worried about (again, unlikely) winding up in a similar rehab situation (that was not my first time at the training center, while I was in HS I went there for a bit over the summer for a couple years, though this time was the most aggravating), where I do have figures of authority telling me what I can/should and cannot/should not do. Not likely, buuuut...

I guess next time I have a call that needs made, I should try one of the several IP relay (meaning on the internet) services and see how it goes. Or should I call random places to get comfortable instead of waiting for something important?

[peglem]

Do they need to have equipment to receive your call, or does it work for whomever you call? If you can practice on people you know, it might make you more comfortable overall.

[Aspigander]

No one needs special equipment. The deaf/speech impaired/whatever caller can have a TTY, and from what I understand that used to be the only choice, but now all the caller needs is computer and internet and all the callee needs is a phone. When at the training center, the one student there who used TTY and IP relay had me give her my cell number, and she called me with IP relay to show me how it works. Rather interesting, because I was standing like two feet away from her while we had our 'phone conversation'.

I guess I could see if my parents would be okay being my IP relay guinea pigs. They're really the only people I know. Of course, they are also my 'safe' people to call normally.

[peglem]

No one needs special equipment. The deaf/speech impaired/whatever caller can have a TTY, and from what I understand that used to be the only choice, but now all the caller needs is computer and internet and all the callee needs is a phone. When at the training center, the one student there who used TTY and IP relay had me give her my cell number, and she called me with IP relay to show me how it works. Rather interesting, because I was standing like two feet away from her while we had our 'phone conversation'.

I guess I could see if my parents would be okay being my IP relay guinea pigs. They're really the only people I know. Of course, they are also my 'safe' people to call normally.

That sounds perfect! After that you have to order chinese food delivery!

[Aspigander]

Well, I do love chinese food.

But then there is the problem of having to answer my door to a stranger.

[peglem]

Well, I do love chinese food.

But then there is the problem of having to answer my door to a stranger.

Just wide enough to fit the food and money through!

[Aspigander]

Well, that is true.

Okay, I did some poking around, and I can see a potential problem. I guess not something that's a huge issue for a few months, but something that will become a problem I think.

Right now, you can use an IP relay service without any kind of registration. However it seems that the FCC has mandated, effect Nov. 12th, that anyone using IP relay must register with a relay service provider in order to be able to use IP relay. It seems to be a free registration. This in itself is not the problem.

I decided even though the mandate doesn't start until November, If I'm going to use IP relay I'd get the registration thing over and done with. Well, I never got through the whole process. You have to check a box that certifies that you are eligible to use IP relay due to being deaf, hard of hearing, or speech disabled. So it does seem that you legally have to be one of the three. The only one that would possibly work in my case is speech disabled, though as I've said I'm pretty clear in speech now, and not sure that I would still qualify for being speech disabled.

So it does appear that, at least effective 11-12-09, you do legally have to have a hearing or speech impairment to be allowed to use IP relay.

Drat! That might wind up being a problem!

[roadracer]

aspiG, you can us IP-relay here
http://www.ip-relay.com/index.php
go to services at the top, then click on quick connect/call now, then get ready to type, as it connects as soon as you click on it!
you dont have to worry about what type of disability you have, you dont have to tell them what disability you have, and you dont have to say anything about it or anything, and no one will ask you, as THAT is against the law for them to do that, so yes you can use it.
But WARNING WARNING, this is the only problem you will might run into, and this is a big one for me, is that you have to know how to have a conversation with it, you have to know how to do it. It is the same as TTY, like for instance you have to use abreviations and stuff and do it a certain way. I have not learned it all, but for instance you have to use stuff like you have to type GA after you are done with your message to tell the other person to 'go ahead'. SK means stop keying, GA to SK means go ahead im finished. Here is a example conversation
Some sample opening and closing messages are:
Hello, Access Board, this is Jane Smith, may I help u? GA
Dept. of Justice, Ms. Smith here. May I help u? GA
Good AM, this is Ms. Smith at the Dept. of Agriculture. GA
Thank u for calling, bye to SK or GA
Have a good day. GA to SK
http://www.dlrp.org/html/publications/508telecomm/tty.html
http://www.azrelay.org/tdd_etiquette.cfm

[Aspigander]

you dont have to worry about what type of disability you have, you dont have to tell them what disability you have, and you dont have to say anything about it or anything, and no one will ask you, as THAT is against the law for them to do that, so yes you can use it.

On that website you linked to, did you see this on the lefthand side?

The FCC has mandated effective November 12 that all users of relay services must have their own 10 digit number on file with at least one provider.

You must have your own, 10 digit number in order to continue to place calls after November 12.

Please click here to get your number.

When I go through poking around that process (because if I use it I'd have to by Nov. 12th anyway), I see a checkbox that says (I'm going to bold what concerns me):

Terms
By clicking this checkbox I confirm that:

* I have read both the Address Advisory and the E911 Advisories and understand that I am solely responsible for ensuring the correct, complete and current address is provided to Go America.
* I live in the United States.
* I am 18 years old or older.
* I certify that I have verifiable hearing or speech disability necessitating the use of text relay services.


I know I technically don't have to worry about that until November, but I'd hate to get comfortable with it just to have to stop using it because of the federal mandate.

[peglem]

Don't you think your psychologist would verify your need, due to anxiety disorder? But, also, I'll bet they don't even check. Is it the company requiring that or the feds? The company might want the info to market products to you. If nothing else, you could probably email the service and explain your situation. I'll bet they'd know what to do, and I bet they'd have no problem with allowing it. Find a way, lauren, find a way.

[Aspigander]

Don't you think your psychologist would verify your need, due to anxiety disorder?

Well, probably, if that's a legal way to do it. But it says hearing or speech disability, not anxiety disorder.

Any company I've checked the registration process on (I've checked three), there has been a similar check box. So I'm assuming they're asking for that check box to be checked on directive from the feds.

I wonder though, if I could just check the darn box. After all, while the speech issue didn't in itself cause me to have an anxiety disorder, I'm sure it contributed quite a bit to it.

I should ask people that know me, parents, psych, things like that, if they can tell I have a speech disability. I know that since the therapy two years ago, I'm not asked to repeat almost everything I say ten darn times before the person gets it.

[peglem]

If it was me, I'd just check the box and get on with my life, but if I was you, I'd probably email them (there is a "contact us" option) and explain the situation so I wouldn't end up with anxiety over it.

[roadracer]

I know your having a hard time with that one message that says you must have hearing or speech disability, but,
YOU DONT HAVE TO PROVE OR PROVIDE OR TALK ABOUT OR EVEN LET THEM KNOW YOU HAVE A DISABILITY, THEY WILL NOT ASK, THEY WILL NOT PROSECUTE YOU OR THROW YOU IN JAIL. YOU ARE NOT BREAKING ANY LAW, THEY TAKE YOUR WORD FOR IT!!!!!!!!!!

Don't you think your psychologist would verify your need, due to anxiety disorder? But, also, I'll bet they don't even check. Is it the company requiring that or the feds? The company might want the info to market products to you. If nothing else, you could probably email the service and explain your situation. I'll bet they'd know what to do, and I bet they'd have no problem with allowing it. Find a way, lauren, find a way.

You dont need to verify anything, you dont need to provide any sort of paper or anything, it is against the law for them to ask you what your disability is or to make you provide proof.
OKAY, so now that we got that out of the way, no need to worry about that now :)

Okay, about the number, inorder to use the service right now you dont have to set anything up, you just click were I told you and it pops up and your ready to enter phone numbers and to start talking. But you need to know how to use it if you dont already, like I said with the abreviations and everything.
But if your worried about the number, you can get one right now, by clicking the 'click here to get a number' and you will have a number in like a couple minutes
http://www.ip-relay.com/register.php
If you want me to I will get myself a number so I can let you know what the process of getting a number is like? but I think all you need to do is type in your name, address, etc, nothing complicated

[Aspigander]

THEY TAKE YOUR WORD FOR IT!!!!!!!!!!


Hmm, why would they have the check box, if it's just an honor system? And, wouldn't it be at least somewhat dishonest to check the box that says I have one of the listed disabilities, if I can physically speak clearly enough to be understood on the phone, even if they don't ask for proof?

You dont need to verify anything, you dont need to provide any sort of paper or anything, it is against the law for them to ask you what your disability is or to make you provide proof.

Well, that makes me wonder why they have the check box...

If you want me to I will get myself a number so I can let you know what the process of getting a number is like? but I think all you need to do is type in your name, address, etc, nothing complicated

No need to go through that -- I don't have an inherent problem with registering. It's just the check box that has me nervous.

ETA: RR, Peg, I'm not causing either of you to pull your hair out or have a stroke, am I?

[Aspigander]

Edited to scrap this post. I'm adding it to my last post.

[roadracer]

you know, I bet when your going shopping and you have 11 items, and the '10 items or less' lane was empty, and the rest of the other lane went around the store, I bet you would wait in that lane for hours, because you had 11 items, and the 10 item lane is only for 10 or less...
Most people would just go threw the 10 item lane because 11 items is close enough to 10.
I know most people on the spectrum are pretty rigid with sticking to the rules, and would act like it is commiting murder bending the rules for certain things, when NT's have a different way of looking at the rules.
If the rules had to be that rigid with the dx you must have to use the service, well then they would require you to prove your disability to them, but no, they dont require that, and only require that you honestly need the service, meaning that the 'rule' is somewhat flexable.
Now think about it, they arent going to say "this service is only for people with hearing or speech disorders, and also people with anxiety disorders that affect there ability to use the phone, and people with autism that have trouble using the phone, including people with physical disabilities that cant use normal phone, and ______" whatever other disabilities. They couldnt posibly write that up to include every specific disorder in existance that would cause problems with the phone. No they simply put down what they have there inorder to keep people who dont have a disability from using the service, but in all reality anyone could use it disability or not, they just want the people who are not disabled to have a little respect for the people who need the service, that is what that means.

[Aspigander]

you know, I bet when your going shopping and you have 11 items, and the '10 items or less' lane was empty, and the rest of the other lane went around the store, I bet you would wait in that lane for hours, because you had 11 items, and the 10 item lane is only for 10 or less...


LOL, I've seen my NT mom do that, actually. She would count items, and go: "Oops, can't use the express lane -- too many items."

I know most people on the spectrum are pretty rigid with sticking to the rules, and would act like it is commiting murder bending the rules for certain things, when NT's have a different way of looking at the rules.

I never really have understood the way NT's look at rules. You'd wonder why they have rules in that case, since NT's don't follow them and think it is 'okay'.

Now think about it, they arent going to say "this service is only for people with hearing or speech disorders, and also people with anxiety disorders that affect there ability to use the phone, and people with autism that have trouble using the phone, including people with physical disabilities that cant use normal phone, and ______" whatever other disabilities. They couldnt posibly write that up to include every specific disorder in existance that would cause problems with the phone.

Oh, of course. I get that. But wouldn't you think it would make more sense to say: "Any disability that affects your ability to use the phone"? That way, they don't have to type up every single disability that might affect phone use, yet still lets people know that they can use it even if their hearing or speech doesn't affect phone use, as long as they have a disability that does.

[roadracer]

okay then, dont use it then, dont use any type of phone system then, and just kick back and wait for them to change the wording :p or else the relay police might come nockin at your door :p
I really am not sure what else to tell you, other then there are people like you and me who use that service every single day and never gave that message much thought. It is not like your commiting a crime here

[Aspigander]

I really am not sure what else to tell you, other then there are people like you and me who use that service every single day and never gave that message much thought.

Hmm, well, perhaps I shouldn't give it much thought, either.

[peglem]

Lauren, there is such a thing as following the spirit or intention of the law. You know how you can't possibly make a blueprint for every possible thing that may happen? Well, nts know that, but instead of stressing about it, we know that its okay to make exceptions when necessary, as long as you aren't being abusive. You need the service. Its there for people who need it and you are not going to abuse it with prank phone calls and stuff, so just use it with a clear conscience.

[Aspigander]

I've been wanting to post this for a week and a half, but couldn't because I've been at the boat. I should go to bed, but I NEED to post this. You guys are going to love the irony here, I'm sure. lol

Just before I left, I googled around for a forum that would know about IP relay services and stuff. Not that I don't trust you guys, I do, but I figured if I could find a forum where people use it and know a lot about it, that would be a great place to ask if my use of it would be okay. Not surprisingly, a forum I found was for deaf folks. I was reluctant at first, but figured I want to make suuuure my use of relay was okay, so I'd better ask, even though I'm not deaf. Well I was typing up this post (first paragraph apologizing for being a hearing person posting on a deaf forum, and that I hoped I wasn't stepping on any toes), when my dad came and asked if I was ready to go, as he was. I had it in my blueprint that I may not get to finish the post, so it wasn't a huge problem and I just resolved to post when I returned home.

Well on the drive there, the irony hit me. Here I am, so afraid of 'breaking' a 'rule' about using the service, that I'm going to 'break' another 'rule' (hearing person posting on a deaf forum) to see if the original 'rule' would be okay to 'break'.

I came to the conclusion that I might just as well break the original rule. So I'll probably try it out at some point. Darn it Peg, you've really got me wanting Chinese food! lol

[roadracer]

that I'm going to 'break' another 'rule' (hearing person posting on a deaf forum)

well thats not a rule, just like you dont have to be autistic to post here or on any autism forum. If you have something relivent to the forum then I would say go ahead and post it. There is a good chance that lots of the people there are not deaf themself, but have a child who is deaf, or might work with deaf people or whatever. You dont need to be autistic to post on a autism forum, so it makes sense that you dont need to be deaf to post on a deaf forum.
Also, before you post on there or anything, I have some information for you about this, I will pm you about it

[Aspigander]

well thats not a rule, just like you dont have to be autistic to post here or on any autism forum. If you have something relivent to the forum then I would say go ahead and post it. There is a good chance that lots of the people there are not deaf themself, but have a child who is deaf, or might work with deaf people or whatever. You dont need to be autistic to post on a autism forum, so it makes sense that you dont need to be deaf to post on a deaf forum.


LOL, well, that makes sense. I'm guessing probably about half of the things I think are 'rules' to be 'obeyed', probably aren't.

Also, before you post on there or anything, I have some information for you about this, I will pm you about it

Not trying to sound rude or impatient, as I realize you may not have had a chance yet, but since it's been a little while I figured I'd see if you might need a reminder?

[roadracer]

Not trying to sound rude or impatient, as I realize you may not have had a chance yet, but since it's been a little while I figured I'd see if you might need a reminder?
OMG, I am SOOOOOOOOOOO sorry, I forgot to send you the message, I am sending now!

[Aspigander]

No need to apologize, it's okay. :)

Read it, I'll likely reply to it tomorrow (argh, make that later on today, I'm being a night owl here, as usual lol).