Helplessness, Vulnerability, Disability

Something odd just happened to me.

I have anxiety around the phone. From talking to other people I know, it seems like this isn’t rare. Mine’s gotten worse recently, like a lot of my other anxieties. I *can* make phone calls, and there are kids of phone calls that are easier for me to make than others. For instance, anything spontaneous is easier than anything that I know in advance I have to do. I can call person A to be social for ten minutes, but it’ll take me hours to work up to checking in with person B to confirm that they’re coming to an event, and even when my anxiety problems weren’t bad, it would take me days to work up to calling someone I didn’t know to interview them cold for an article. Once I’m on the phone, I feel fine. I’m charming, I’m funny, I’m articulate. I *like* talking to people, even people I don’t know. The anxiety is around the act of calling itself. I don’t know why. It parallels the anxiety I’ve had in the past year or so around leaving the house. I like being around people and crowds once I’m out, but the act of leaving — and the act of calling — are a barrier for me. Sometimes it’s a barrier like a membrane that I can push through with just a little bit of teeth-gritting and concentration, and sometimes is a big solid wall. There are people I have no or little anxiety around calling, but also places and people I have increased anxiety around calling – for instance, the doctor.

After my medical problems this summer, I’ve had a lot of problems with anxiety and the doctor’s office. My blood pressure goes up to really scary levels when I go in. I have anxiety attacks. My heart rate accelerates so that when I’m resting it’s as high as it should be when I’m doing arobic exercise. All my terror over possibly having multiple sclerosis, I’ve mapped onto the medical facilities themselves.

This anxiety has gotten better in some ways — if I go in to see a familiar doctor, for instance, my blood pressure won’t skyrocket — but it’s still present.

Anyway, one of the byproducts of this is that I don’t call the medical office. My [male] spouse does. If we leave it to me to call, then I will find ways to avoid it or to forget, or I will have insomnia before I have to call (and my mood problems tend to be complicated by lack of sleep), or I just won’t call. And then I miss appointments. No one wants me to miss appointments.

This is one of the things we do in the distribution of labor in our marriage. If I were talking from a feminist standpoint, which I generally do, I would say that my spouse compensates for me in certain ways and I compensate for him in others. If I have anxiety around the doctor’s office, then he calls. If I suck at maintenance tasks because my head is always on global stuff, then he focuses on maintenance tasks like grocery shopping and getting us to appointments. If he can’t do time management for big projects or know how to do the emotional work of maintaining the network of our family and friends, then I do that. And so on.

If I were to talk about this from a disability rights perspective, which I generally don’t, I would say that my social anxiety causes me certain problems which I anticipate and compensate for by asking my spouse to be my caretaker in certain capacities. (I don’t know if I’m using the right terminology here… when I say a disability rights perspective, I mean placing my status as someone with anxiety problems in the foreground.)

Unfortunately, due to a cock up a couple weeks ago, despite the fact that I had my spouse calling, I *did* miss an appointment. We fucked up our records — mea culpa, except for both of us. I really don’t want to miss a second appointment despite the fact that I hate going in.

OK, now we get into fiddly stuff. Because I missed an appt, I’ve had my spouse call in to get a full list of all the times I’m booked to go in. In addition to all the real appointments, they gave us one time when I am actually, in fact, *not* booked to go in. Why? I don’t know. I assume someone just misread or misspoke. Anyway, we noted it down as a time when I had to go in — and that time was tihs morning. I was surprised that I had this appointment time because I didn’t know what it was for, but we assumed it was real.

Yesterday, I had the privilege of contracting strep throat, so we had to make an emergency appointment. We went in, I stopped at the desk to register for the appt, and asked her to confirm that I was coming in today as well. “I don’t see anything,” she said. “We have nothing in the books until January.” I said thanks –and because it had been odd that I’d had the appointment in the first place when I didn’t know what it was for, I started assuming that it had just been an error that anyone had told me about it in the first place.

Still, I wanted confirmation that I didn’t have an appointment and that the woman at the desk hadn’t been misreading my chart, so I asked my spouse to call this morning and make sure that I didn’t have an appointment. He learned that in fact there’s nothing for today, and that was that.

Only it wasn’t. After that, the scheduling people called back and asked to speak to me. A woman let me know on the phone that they usually released information to spouses about appointments, but they were no longer willing to release information to *my* spouse because of the kinds of questions he’d been asking, and I’d have to call myself. I explained why he’d been asking that question, the whole story about the phantom appointment — and she repeated her request that I only call about my appointments myself. “Okay?” she said. I, still strep-throated and half-asleep, said, “Um…” and tried to figure out how to say “No, that’s not okay.” Before I could figure out what to say, she said, “Thank you,” and hung up.

I was very upset. Foremost — stupidly — was embarrassment. Embarrassment that we’d missed the appointment a couple weeks ago, embarrassment that we had this phantom appointment which I knew would look strange and irresponsible to the scheduling people, embarrassment that I was bothering them, embarrassment at being called. Secondly, I knew that their request would cause us problems around my anxiety, and that the likely result was that I would end up missing appointments and missing care.

I don’t want to miss appointments or care. I don’t want my relatively uncomplicated problems to become major ones. I don’t want my phobia of the medical system to negatively affect my health.

I called back and spoke to the woman’s coworker, and explained my problems with anxiety. I explained why I needed my spouse to be able to call. I explained that it was okay with me that he did. I asked her to note in my file that he could call for me. She was friendly, and helpful, and she placed the note in my file, and she talked to me as if I was a reasonable, intelligent, responsible person, which I appreciate.

I know why the schedulers were upset and concerned. They were worried I had a stalker. As a feminist, I approve. I approve of the fact they were paying enough attention to be worried. I approve of the fact that they decided to act on that concern rather than remaining passive. I approve of the fact that they tried to find a way to solve the problem. I greatly appreciate that both were well-intentioned and friendly and helpful and good people.

However, I don’t think the way that they tried to act on their fear was the best way that they could have done so. There are several issues for me here:

1) Once they’d spoken to me about the problem, they knew that the person who had been calling was — as claimed — my spouse. They knew I knew what was going on, and approved. The issue then became not one of protecting me from a stalker, since there clearly wasn’t one and everything that was happening was going on with my understanding and approval. When they found tihs out — which did not seem to surprise them — they did not adjust their plan accordingly. The idea of a possible stalker became more important than the actuality of no stalker.

2) When speaking to someone who is clearly uncomfortable, saying “thank you” and hanging up is a great conflict-avoidance strategy. I heartily approve of this strategy for many occasions. However, in this case, it was a problem because of what I was unable to articulate to them off the cuff. If I had not called back, I would not have been able to tell them why it was a problem. If my anxiety were worse, I would have been unable to call back (this situation got covered under my nonphobia of spontaneous phone calls).

3) They didn’t consider disability when they called. It was off their radar.

There could have been other strategies for dealing with this situation. For instance, the only way that the schedulers ever know that someone is who they claim is that the person provides their student ID number. If I didn’t have an identifiably female name, and my spouse an identifiably male voice, then they would never know he wasn’t me. If they were concerned about protecting my privacy, we could have set up a password for my spouse to confirm his identity, or set up another layer of privacy to make sure that he was someone authorized. They have the ability to mark in my file — they could mark a couple alternate questions that would assuage their fears.

And of course talking to me itself was something that they could have used to assuage their fears. If they had approached the situation with open questions, I might have been able to explain what was going on — and possibly propose alternatives. Now, these women work in a college health center, an environment whch is very aware of sexual violence, and one in which many of the patients — by virtue of being young — aren’t totally able to act as mature adults. Further, this is a situation in which the schedulers are experts and I am not. They have to deal with medical appointments every day. I understand why they approached me with a decision and a plan, and if circumstances had been slightly different, it would have been a good idea. Unfortunately, they didn’t really consider that I was an expert on my own life — instead, they operated based on their assumptions about my life (that I was able to call, for instance). Again, I understand why this happened and know it was well-intentioned, but it misfired in this case.

I am grateful to have read some writing on disability rights in the past couple years. Knowing something about how the medical system creates problems for people who need caretakers to act on their behalf allowed me to contextualize what was going on. It allowed me to see what was happening as a systemic problem instead of an individual one. Having read about the social creation of disability allowed me to think about my problem not as just a failing in myself, but to consider all the ways in which the system is set up to accomodate “normal” abilities and lacks, and to punish deviance from that norm, even when compensating for that deviance is relatively easy.

If I hadn’t had a sense of these critiques, I would have focused on my personal shame at being unable to handle these situations without my spouse’s help. I would have castigated myself for being weak, and tried to force myself to act as if I didn’t have the anxiety. I know what the result would have been — I did not go to a single medical appointment last year. I never even got as far as booking one, despite how severe my depression became. Having access to the consciousness raising of systemic critique of ablism allowed me to look at a system instead of my personal problems.

My problems are mild, but they do interfere with my life. They’d interfere more if I was unable to use the solutions that I’ve set up for myself to cirumvent my problems. I don’t really consider myself part of the disabled community — I don’t think I have a right to, when there are people like Kay with much more severe problems. I feel about it sort of like I feel about cliaming an LGBT identity — I’m bisexual because I am sexually attracted to women, but my few relationships (only three) have all been with men. I don’t want to be disrespectful to people who have to deal with real problems of oppression. At the same time, disowning a disabled identity is clearly an ego-defensive manuever; I don’t want to think of my problems as being real problems. I don’t want to admit that I am not “normal,” or abled, or able to do everything that I expect of myself.

When I got off the phone with the woman, I started crying. I’m still feverish from strep, and was tired, and I’m sure part of my upset was just being weakened. But I was still astonished at the force of my reaction. I didn’t know why I was so upset. Now I’m starting to realize — it was the shame of having problems, and the fear of having been for a moment helpess and vulnerable before someone else.

Commenters, I’m vulnerable here. I ask you to respect that.

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19 Responses to Helplessness, Vulnerability, Disability

  1. 1
    Nan says:

    Strep can be really nasty. Hope it clears up soon.

  2. 2
    Plaid says:

    First of all, *snug* from a random stranger. That’s hard.

    You’re right, disability isn’t on a receptionist’s radar when it comes to spouses (or anyone else) calling for appointments. However, I don’t know if phone anxiety is a disability, or is even classified as such by mental health professionals.

    I’m speaking from a similar phone position. When it comes to personal calls, the phone and I do not get along. I’m generally fine once I’m on the phone, but making the call can include some major inner drama. (You could say that, as long as *I’m* the reason the call is being made, I am very unhappy using the phone.)

    This difficulty with the phone has made the most impact on my life when trying to make appointments with counselors or therapists. Every office or counselor I’ve tried has required a phone triage or session before scheduling an in-person appointment. Walk-ins and friends making the call were not allowed; not one of these folks would allow for exceptions to the rule. They’d eventually get me on the phone, because I’d be necessarily tenacious, and then they would ask me to call back because I was too upset to speak clearly over the phone. You know, great use of time when a friend was more than willing to make the appointment, and/or I could come into their office and be calmer overall.

    Mental health professionals, of all people, should have some idea of whether something is a mental disability, and be willing to work around such. And when I have questioned the folks I’ve seen, the explanation I’ve been given for the phone requirement is that it’s not that I can’t physically use the phone; it’s that using the phone from my perspective is difficult approaching impossible, but not literally -impossible-. Using the phone for is hard, and I don’t like it, and it’s pretty much a lot of wasted time on my end when I’m fretting… but it’s not enough to excuse the need.

    This question makes me wonder where the line for disability belongs. I mean, sure, there are more efficient ways to complete a call if you’re uncomfortable using the phone, but can it be considered a disability only because it’s hard? For instance, when you needed to, you -were- able to call the doctor’s office, despite how hard it was. This is unlike someone who needs an intermediary because they cannot hear or speak over the phone.

    Here’s another example which I find similar to the phone. I’ve been unemployed for a couple years at the moment and I find it hard to apply for jobs or volunteer work, for myriad fears (I’ll be rejected like all the other times, not qualified, over qualified, they’ll be too suspicious that I haven’t been working, etc.). Does a difficulty in applying to jobs count as a disability? It’s not a great situation, but it’s not as if I physically can’t send my resume and cover letter over — it’s that I’m, consciously or not, imposing a set of restrictions on my behaviour. And while this leads to my continuing unemployment as if I were totally unable to apply for work, it’s not really the same.

  3. 3
    Mandolin says:

    I’m contextualizing it as disability because of the fact that it fits in with my depression and social anxiety, but I hear what you’re saying.

  4. 4
    debbie says:

    I’m really glad you posted this. I’ve been having to confront my shame about my anxiety disorder in the past few days, as my anxiety is so severe that I am unable to write a paper (that was due almost 3 weeks ago). I hate that I’ve had to ask for extensions, that I’ve gotten the office for students with disabilities involved, that even after getting some accommodations, I’ve been unable to do the work. The worst part of it for me is that people don’t get it. They really cannot imagine sitting in front of a computer screen for 5 hours after doing days of research, and not being able to get a single word out. They don’t understand that the severity of the anxiety can be unpredictable so I don’t know how long it will take me to get it done. Mostly I hate that I obsess over whether my professors think I should be allowed to be in grad school at all if I cannot meet the requirements.

    This year is the first year that I’ve registered with the office for student’s with disabilities, and the first year I have requested any accommodation. I still struggle with conceptualizing my anxiety as a significant disability and not a personal failing.

  5. 5
    debbie says:

    I also have a great deal of difficulty applying for jobs. It is definitely a manifestation of my anxiety disorder. For many years I thought I was just lazy because deep down I didn’t really want to work because if I did, I would just suck it up and apply for a job. For me, it’s avoidance behaviour – I won’t apply because if I do there is a possibility of rejection.

  6. 6
    Mandolin says:

    ” For many years I thought I was just lazy because deep down I didn’t really want to work because if I did, I would just suck it up and apply for a job. ”

    Yeah, right. I mean, a lot of this is fuzzy.
    I’ve had eating disorder problems since I was 13. At times, I’ve been bulimic; at others, my anxiety around food just leads to things like my having panic attacks every time I need to go to the grocery store. Last year, when I lived alone, I just stopped going to the grocery store. When I didn’t have food, I didn’t eat. I *could* go to the grocery store — I did occasionally — but the irregularity of my shopping trips eventually led to vitamin deficiencies which in turn probably caused my nervous system problems / parasthesias this summer.

    Could I have gone to the doctor last year? Sure, I suppose. But I didn’t. I was suicidal, and I didn’t call anyone or go anywhere. I needed help to get to the point where I could go into the doctor.

    When anxiety is comorbid with another disorder, which I think it often is, I don’t know if it’s as easy as analyzing each instance of anxiety separately.

    I think Ballastexistenz has written about periods of her life when she was only able to address one major need at a time. She oculd get a drink of water, or get to the bathroom, or get food, but not all of them. I can call the doctor and not do any of my work for the rest of the day, and afterward suffer a mood crash from lack of sleep — or I can do my graduate work. And if I need to call the doctor once a week, that becomes a severe obstacle.

    Or, other times, calling the doctor won’t be a problem. But like debbie, I can’t predict when those days will be in advance.

    Disability isn’t necessarily synonymous with inability. A physically disabled student I went to Mills with *could* have gotten into the classroom on his own with a lot of extra time and effort, but it was easier and better for everyone if someone just opened the door.

    Also, I’ve tended to come across to people as extremely capable and unaffected — partially because I use a lot of workarounds. That means that I am able to avoid some of the stigmas associated with problems like mental illness. At the same time, it’s a catch 22–when I need to use one of the workarounds that keeps me functional (like not wasting my energies on dealing with calling the doctor, so I can spend them instead on completing my classwork), people may assume I don’t really have a need for those workarounds. After all, I’m very capable and accomplished and have acheived highly throughout my life.

    I know you’re not arguing against all this per se, and I appreciate your thoughts and epxlorations. This is just my initial reaction to it.

  7. 7
    Ledasmom says:

    Sympathies, both for the anxiety and the strep. Both my husband and I are nervous about calling people on the phone, but somewhat less nervous when making each other’s appointments, so that’s what we do. I make his appointments and he makes mine, and it still takes me hours (and many rehearsals of what I need to say) to work up to making those appointments.

  8. 8
    Daomadan says:

    I just wanted to express my understanding of the phone and anxiety. I have the exact same relationship with it. I had avoided thinking about my anxiety disorder in terms of a disability, but you have expressed that well. Thank you.

  9. 9
    Tapetum says:

    Phone anxiety – I know that one very well indeed. Phoning, and a few other, very specific tasks (notably writing), are very hard for me to get going on, even though I do well once I am going.

    I hadn’t noticed the eating of the day when I do have to make a particularly problematic phone-call, but now that you mentioned it, I can see that I do that too. When my mil died, I had to call life insurance companies, because nobody was sure which company she had her policy with. I accomplished nothing that day but sitting on the bed, working up to the next call, making the call, and then working up to the next call. I was on the phone probably less than an hour total, but it took me nearly eight hours and I got nothing else done at all.

  10. 10
    Kay Olson says:

    Such a great post, Mandolin. Lots of things I want to comment on, but just a little for the moment:

    I expect the concern the doctor’s office had in speaking with your spouse was not about stalkers so much as their own liability for conveying confidential health information to anyone that is not you. I’ve had this issue often in the past couple years, beginning with two years ago when hospitalized, trached, using a vent, and mostly unable to speak verbally AT ALL for close to a year. My father, and sometimes my mother, needed powers of attorney and medical info releases and such to talk with Medicare, state social services, insurance companies, financial institutions, etc. etc.

    To the extent that their concern is their own liability, disability is also not on their radar because they don’t care what your reasons are. They’re busy crossing t’s, dotting i’s, and all that. Very frustrating, but that’s been my experience.

    For me, my father was making calls because I literally could not speak on the phone or anywhere else. Then, I could speak some, but not well. Then I could (can) speak well, but only if: my trach cuff is at optimal inflation/deflation to allow it, I don’t need suction and there’s no gunk complicating speech, I’m not hoarse from speaking elsewhere too long, and I can figure out how to hold the phone and toggle my trach around a bit to make my voice as clear as possible. AND I’ve gotten over the performance anxiety all these iffy factors create. AND I can be confident the person at the other end of the phone line will have the patience to let me figure all this out while we converse, if needed.

    At which point would I consider this an inconvenience instead of a disability preventing me from using the phone myself? If I could rid myself of that last, the impatient person at the other end who won’t listen until we communicate sufficiently, I’d say I’m not much disabled in speech at all. But their effort in this matters too, so I have no idea where disability leaves off and anxiety or other factors viewed as less severe come into this.

    I wish all phone conversation could be instant messaging on my end instead. What a relief that would be for me.

  11. 11
    Jaedynn says:

    Another *hug* and a thank you from an internet stranger, here. =)

    Thank you so much for posting this, you (and the commenters) have made me realize that I wasn’t the only one with this phone (and job) issue and I wasn’t a freak for it.

    This is something that seemingly came out of nowhere for me over the past few years. I am very well-spoken, and some days can handle business calls very well, but many days I just can’t do it. Lately, I’ve gotten better about calling people, but panic if the phone rings and its an unrecognized number. Most of the time I too just have my husband field the calls. I try my dangdest to get people to deal with me through e-mail, which is my much preferred method of communication.

    I have never actually tied these problems to my tendency towards anxiety problems, so you gave me something to research and think about (that maybe my problems are not as under control as I thought, and manifesting themselves in different ways).

    Also, I don’t know if this will help or not, but here is my trick for the doc’s office. Every time they give me one of those privacy forms to sign, I write on it (and sign and date it) saying something to the effect of: I give my mother (name, address, phone) and my husband (name, address, phone) full permission to request and access all of my medical information at any time. Then I show it to the receptionist, who then either acknowledges it and notes it in my file, or looks at me weird, depending on the office. So far, there have been no problems. However, I do live in a smallish city, where people tend to know each other a bit more and be a bit more lax about major privacy issues, so I don’t know how that would work out in a larger area.

    Thanks again for the post, and hope you feel better!

  12. 12
    Kay Olson says:

    (I don’t know if I’m using the right terminology here… when I say a disability rights perspective, I mean placing my status as someone with anxiety problems in the foreground.)

    For what it’s worth, I think that’s an excellent way to look at it.

    A woman let me know on the phone that they usually released information to spouses about appointments, but they were no longer willing to release information to *my* spouse because of the kinds of questions he’d been asking, and I’d have to call myself.

    Even before you related this was an anxiety issue, I find the woman’s response to your spouse’s calling completely inappropriate. They don’t get to say how you make your appointments or communicate with them. They don’t have any say in that at all, except, I suppose, to refuse you service altogether. They can tell you they have a problem they need addressed, but they don’t get to tell you how you must address it.

    Having access to the consciousness raising of systemic critique of ablism allowed me to look at a system instead of my personal problems.

    Yeah. Me too. Every single day.

    I don’t really consider myself part of the disabled community — I don’t think I have a right to, when there are people like Kay with much more severe problems. I feel about it sort of like I feel about cliaming an LGBT identity — I’m bisexual because I am sexually attracted to women, but my few relationships (only three) have all been with men. I don’t want to be disrespectful to people who have to deal with real problems of oppression. At the same time, disowning a disabled identity is clearly an ego-defensive manuever; I don’t want to think of my problems as being real problems. I don’t want to admit that I am not “normal,” or abled, or able to do everything that I expect of myself.

    I can’t help you with the ego-defensive part. That’s everyone’s individual journey, I suppose. But as to the rest, it’s no competition, even when it seems to be an identity that’s set up that way, with the U.S. Supreme Court repeatedly taking cases just to decide who qualifies and who does not qualify as disabled, it’s hard to see past that. Or other qualifications like disabled parking placards or disability benefits or even disabled access bathrooms and event seating. Whether they realize it or not, nondisabled people are called on to identify as nondisabled all the time — or identify as disabled, or risk being seen as stealing someone else’s benefits.

    How qualified am I to talk about autism, for example? I am not autistic, don’t have any close family or friends definitively diagnosed (perhaps some undiagnosed, I think). I think the worse crime would be for me to talk about disability rights from only my perspective, where I’m an expert in my experience but my experience is decidedly limited to mobility impairment and related stuff. The challenge is to make the connections and test them publically. At least, for me it is.

  13. 13
    Magniloquence says:

    This is a really good post, Mandolin.

    I’m another person who is glad to see that she isn’t alone with the phone problems. I have a lot of difficulty with certain types of social interactions … certain kinds of phone calls (mostly calling to check up on specific things, or to call someone back about something – calls to just socialize are usually okay), ordering a pizza (thank goodness for online ordering), making mid-level small-talk. When I can, I have my boyfriend manage these interactions. He orders food, he socializes, he does the phone calls.

    Until now, however, I never thought to connect it to the rest of my social anxiety problems. I have a cluster of social anxiety issues that flare up unpredictably – sometimes an hour, sometimes a year; sometimes in quick succession, sometimes with a lot of space in between.

    I spent an entire semester of college eating nothing but ramen and tuna melts – one tuna melt at lunch and one pot of ramen for dinner – not because I couldn’t afford food or because I wanted to control what I was eating, but because I couldn’t stand to be seen eating at all, and tuna melts were the quickest thing that our cafeteria could make (I’d only go in there at their most off-peak hour, and usually I’d wrap the food and hide it in my bag, then go to my room and eat it). I’d sneak down the hall with my pot of ramen, cook it as quickly as possible, then go back to my room with the steaming pot because I was too terrified to take the few extra moments to transfer it to a bowl.

    Eventually, I acclimated to the area enough that I could eat normally, if people I was comfortable were with me and my back was against a wall. (Two, by preference.) By my fourth year, I spent a lot of time in the cafeteria and enjoyed it… but I never did manage to get out of my corner. I still won’t sit in places where people are behind me if I can at all avoid it.

    I nearly missed my pick in the housing lottery one year because we had to do the drawing in a small room overflowing with people. I found myself in a near fetal position on the floor rocking back and forth and digging my nails into whatever bits of me I could reach. My then-boyfriend helped me pick out a room and get out of there as quickly as possible.

    Those things all seem really far away from my phone issue, for some reason. But when I think about it, especially after reading this, it doesn’t seem so strange after all. My first call to one of my friends in High School (incidentally, my first call to a boy for anything other than to get the homework), I stared at the phone for more than an hour. Eventually, my little sister walked by, took the number from my hand, dialed it, waited for someone to pick up, then gave it back to me. She’s teased me for years about it, and I’m still not sure whether I want to punch her or hug her for it.

    Now, I make my boyfriend do that sort of thing. He doesn’t get it at all. He’ll do it because I ask him to, but there isn’t any room in his head to understand why this kind of thing is hard but others aren’t. I’m an executive assistant – my job is to answer the phones, make outgoing calls, and talk to people about things. I can spend an entire day doing that and then come home and cry because I want takeout and can’t call. Maybe showing this to him will help.

  14. 14
    Cola says:

    I’m a totally infrequent commenter here, but I wanted to say that I totally relate to the phone calling problems. (Also, I got my BA at Mills in 2000 so I also wanted to wave at another Mills person. Hi!) I can manage to make phone calls for appointments most of the time and I can call people if I think I’ll get voicemail but I find it almost impossible to call someone that I don’t know very, very well for any kind of social reason. It’s the weirdest thing. I also can’t manage to have long conversations on the phone with anyone no matter what. Which is awful for phone interviews. I end up just doing all kinds of errands in person that could be easier done on the phone because I can’t manage to make myself make a phone call.

    I think almost everyone I know has trouble handling some day-to-day tasks. We just all have mental blocks about something that we can’t get around. I think it’s reasonable to figure out how to help people work around them, even if whatever the problem is doesn’t rise to the level of a proper disability.

    Do you think that the doctor’s office might have been wary of your husband making all your calls for you because they were worried that he might be abusive? Having your husband making all your appointments and getting detailed schedule information for you might have raised a bunch of red flags for them and would explain why the woman still wanted you to do the calling even after you explained.

  15. 15
    Thene says:

    Thanks for writing about this problem – I think it’s brave of you. I’m both a caretaker and to some extent a sufferer; I live with someone who is afraid of answering the phone and of opening the post. Grabbing the phone whenever it rings is easy enough; she’s got most of her bills delivered by email or paid direct debit, but she sometimes misses things that lurk under the mountain of junkmail on the doormat. Thing is, these hurdles rub off on me a bit too; I’m still fine with answering the phone, but I’ve got scared of making calls, and I can’t always open my bank statements now. Neither of us can tolerate voicemail. It’s like I’ve learned to express my own anxiety in ways that are similar to hers. The communication angle makes it feel like it’s a simple form of withdrawal – by avoiding the attempts of the big wide world to make contact with you, you can make it disappear.

    She got a Christmas card yesterday. I gave it to her but she put it on her desk and won’t open it yet. Maybe she’s just saving it for Christmas Day. I don’t know if I should, or could, do/say any more about that.

  16. 16
    Elaine Vigneault says:

    You know, knowing that my husband can make medical decisions on my behalf was one of the major reasons I got married. I love him dearly and wanted to spend the rest of my life with him, but that legal status as family that gives him legal permission to care for me helped push me over from the ‘living together’ camp into the legally married camp.

    As much as I hate to see/hear/know of medical personnel disallowing couples who are not legally married from participating in each other’s medical care, it’s just as disturbing when they do it to legally married couples. Talk about undermining marriages. If we’re all just expected to take care of ourselves without any help from anyone, not even a spouse, what the hell’s the point of marriages, of living in communities, of government or politics..?

    I mean, I can see where the doctor’s office is coming from. They probably screwed up with another client and gave out sensitive information to someone they shouldn’t have. And now they’re being extra cautious with everyone. But they’re ignoring their clients’ needs and wishes. They’re imposing a rule that might not even make the private data any more secure. Someone is ‘just following orders’ and no one is really thinking. It’s just a shame because it’s so common.

  17. 17
    Original Lee says:

    Thanks for writing about this. I have a phobia about having my blood pressure taken. My blood pressure goes up, I get the shakes, all of that. Depending on the doctor, I get different responses to my reaction. Fortunately, my GP and my cardiologist are pretty cool about it – they know my blood pressure will go down if they just leave me alone – but my OB/GYN usually threatens to put me in the hospital, which doesn’t help at all. And of course, my life insurance is more expensive because I have “untreated high blood pressure” (not true). Even though this is a fairly common phobia, I get grief for it, which makes it worse. Good luck with the strep and with the phone anxiety.

  18. 18
    Kate L. says:

    Haven’t read all the comments so forgive me if I am repeating something here. I’m just rambling anyway, there’s probably little point to my response…

    First I want to tell you that I have the *exact* same phone phobia. EXACT. And it interferes with my work. A lot. I hadn’t ever thought about it as anxiety. I think I’m just being lazy, or procrastinating (something I am VERY good at), but then I actually make the call, or do the mundane task to be done and I think to myself, “WHY did I avoid that for so long?” It’s crazy. Some things for me to think about for sure.

    2nd, I want to say that it took me close to 25 years to identify as disabled. I’ve had the same chronic condition since birth, though it gets progressive with age. I have known about it for as long as I can remember and I didn’t actively identify as a person with a disability until graduate school. I still sometimes avoid the label because mine is far more hidden than most physical impairments and I can “pass” relatively well, which is a really weird line to walk. I have to be conscious of whether or not to “out” myself and in what situations and then remember whether I have done so. It’s very draining. I often think it is similar to how a LGBT person might feel at times having to decide whether it is appropriate to “out” him or herself, when and how to do so, because it’s not always about wanting to hide or “pass” but rather that sometimes you just forget – it’s a part of who you are and so you don’t remember that you may need to let people know for whatever reason… and that it doesn’t always work itself easily into conversations and then you feel weird for drawing attention to it, because it’s not like hetero folks have to “out” themselves as hetero or able bodied people have to “out” themselves as able… It’s just an odd thing which has taken me a long time to manuever and I feel like I still am in some ways.

    I think that depression and anxiety are very much disabling conditions – and I particularly mean disabling as in society creating obstacles for people with those impairments. Though, as a person who has chronic depression that can flare up in pretty crappy ways, I also do feel like the impairment itself can create some pretty negative obstacles as well – society just feeds into it. It’s part of my issue with the whole seperation of impairment and disability to begin with, though I do find the distinction to be quite useful in many ways. And I also think that a person who might define themselves as disabled by those impairments would have every right to do so, as much as I or any other person with a disability. The problem of course is that the social meaning of disability comes with certain political meanings as well – according to the gov’t you are disabled if you can not work, if you can work, you are not disabled – it’s more complex than that, but generally speaking that’s how they hand out benefits. You can’t be disabled enough to require part time work but need compensation for not being able to produce full time wages, which is very unfortunate, because I think there are a whole lot of people who could quite easily work 20 hours a week where 40 poses too great of a stress and it’s too bad that you can’t work part time and still collect a modified benefit, but I digress…

    Anyway, what I am trying to say is that I think it’s dangerous to play the “my disability is worse than yours.” game as far as who can claim the identity and who can not. Impairment and disability are incredibly complex and multifaceted and the challenges a person with a hidden disability face are quite different than those someone with a visible physical disability, or a mental illness, or cognitive disability, etc. What I think it is important to focus on are that the one thing they all have in common is that society creates and/or exaccerbates challenges for people with disability and that the first step to making changes there is the consciousness raising you speak of.

    In short, I think that your analysis of the situation is a really important narrative. Thanks for sharing.

  19. 19
    shazia sahmim says:

    I like your courage and they way you express yourself. It give me courage to never hide my disability… Good luck with your problems..