self-advocacy

So you have anxiety. And that means for every situation you come across that involves other people and triggers that anxiety, you have to choose between two options.

One is that you power through it and endure the anxiety. The other is that you ask to be excused from it or to reach some sort of compromise where you still do it but in a way that is more comfortable for you.

This is also complicated by the fact that you want to get over your anxiety, or improve as much as possible in your ability to live the life you want, which usually involves some level of exposure therapy and challenging yourself. You know you should power through. You know you tend to feel good about yourself when you’re able to.

But that doesn’t mean you should or can force yourself through any triggering experience that comes up. For one thing, exposure therapy is supposed to proceed by gradual steps. It works best that way. Taking a step you’re not ready for can do more harm than good. Also, it’s exhausting. It’s so unbelievably exhausting to confront intense anxiety on a regular basis. If that means an experience comes up that you probably could handle, but you would rather make some adjustments to make it easier on you – solely because you’re tired of having to handle things that are super overwhelming – you shouldn’t be put down for that. It’s not the same as being constantly avoidant. It’s making a choice to be kind to yourself, to let yourself have a break from having to work so hard – in ways that are often not visible to the people around you, so even though you have to hear a lot about the ways in which you’ve failed to live up to the behavior of a non-anxious person, you rarely get any praise for what you do manage to accomplish.

I have such a hard time with self-advocacy. Trying to figure out whether it’s a good idea. Whether it’s okay. How long to cling to my “demands” before letting it go and accepting I’m not going to get what I want.

I don’t trust myself at all. I don’t like advocating for myself. I hate debating. I hate sounding defensive. I hate the thought that I’m being seen as a burden, someone incomprehensible and exasperating that has to be dealt with. I hate acknowledging the minor things I’m trying to avoid, and even more so, I hate the tone of voice the other person almost always gets that makes me feel ridiculous, the tone of voice that says ‘what is wrong with you? how can this possibly be an issue for you?’ I hate having to repeat myself over and over because people don’t listen, don’t take in things that don’t make any sense to them.

I hate the fact that other people are so quick to belittle me in subtle ways that it doesn’t take long at all before I am completely mired in guilt and self-doubt. I start thinking there must be something wrong with me to have even started this conversation. I wonder if I’m doing it to get attention. But I’m not, because I would much rather the person have just agreed to what I wanted from the start without acting like it was a big deal at all. I wonder if I really need what I’m asking for. I usually conclude that I don’t, because I decide I will survive whatever the situation is, even if it’s ten times more miserable than it needs to be. I decide I need to put the other person first, because this is obviously a much bigger sacrifice for them, even though they usually don’t have a full understanding of what I’ll be dealing with, because I’m not forthcoming enough about it. I tend to feel like I talk about my anxiety constantly, too much, and I don’t even think that’s true. For how big a presence it is in my existence, I’m sure I talk about it way less than I would be inclined to if other people didn’t respond the way they did (getting all uncomfortable, implying that I really need to do something about it because it makes me wrong, it makes me not fit in, and it would be good if I could fit in, conform to society’s model of success, etc.).

The whole process is unpleasant and I think there have been times self-advocating has ended up causing me more anxiety and misery than if I had just done the anxiety-producing thing.

Looking back over my entire life, I don’t think I have ever asked for an accommodation that extreme. I have asked for things that should be simple and easy to say yes to. For example, when I refused to do presentations in school. I went to my teachers and I told them I couldn’t do it, and it was fine if that meant they had to give me a zero for the assignment. I didn’t say they had to give me an alternate assignment. Or even imply that they would be a horrible person for failing me (although I do kind of think they were). All I said is that I would prefer failure to giving the presentation, that I was choosing the zero grade. That was my choice to make. And most of the time they were absolutely horrid about it – rolling their eyes or scoffing at me, pretending they didn’t hear me and then calling my name to present anyway (forcing me to go back up to them and insist again that I wouldn’t do it, this time with more people witnessing it), saying over and over again ‘no, you have to’ every time I said I wouldn’t, acting really angry about it for no good reason I could see.

I had one teacher who actually got it. Instead of making me present, he met with me one-on-one and we had an informal conversation about the topic of my presentation. Did this lead to the ruination of my education? No. He gave me a chance to get the grade I deserved, the grade that reflected my understanding of the subject matter. That’s all that happened. He encountered someone with anxiety issues and treated them decently. Shockingly, life went on and tragedy did not ensue.

Anyway, I guess I just wanted to explore my thoughts and feelings on this topic, because I am attempting to ask for accommodations at work. So far, it has not been going well, and as usual, it’s making me feel crappy about myself. And I know I shouldn’t feel that way. I’m not doing anything wrong – even if they end up denying my requests. Even if they get huffy and act like I’m deliberately trying to make their lives harder. Even if there is a part of me that thinks I could manage without what I’m asking for. I’m not a terrible person for wanting to eliminate a tiny fraction of the stress this trip is going to cause.

signs of emetophobia as a child

I haven't ever known someone else with emetophobia in my "real life" (offline). I did have a strange indirect encounter with it several years ago when I happened to hear one of my bosses talking on the phone about her seven year old niece being hospitalized for refusing to eat while sick, because she was terrified of vomiting.

I don't really like telling people about my phobia in detail, and it especially seemed weird to tell my boss, but after hearing that, I couldn't resist emailing her and attaching some websites with more information. She thanked me for the information and said she would pass it on to the girl's mother. We never talked about it after that (which was a relief to me), so I don't know what happened with the girl, but I hope that if she did have the phobia, she got help for it early on. I know from experience that it only gets worse and more ingrained as you get older - you keep developing more and more avoidance behaviors.

I can think of so many obvious red flags from when I was younger that I'm sometimes shocked my family missed them:

• The biggest one, of course, being that whenever someone around me vomited, I would become upset or panicked. When I was very young, this usually bordered on hysteria. I can remember one time in a restaurant where I catapulted over a chair and ran out of the building to escape (and refused to go back in). As I got older, I tried to hide the response more, but I still would usually walk away quickly, avoid looking at the person, and then get extremely upset if I had to be in a confined space with them. I would try not to breathe or would bury my face in something thinking that might protect me from the germs. I would cry or sulk. Sometimes I would get really angry and be hostile to everyone around me.
• There was a time period (not sure how long it lasted) where I decided it was not safe to touch my food at all and would lift my plate or bowl to my mouth and eat like an animal.
• If anyone in the house was sick, I stayed in my room as much as possible. I tried to eat very little. I would sneak "safe food" into my room like individually wrapped packs of crackers. I was afraid to use the bathroom where someone had vomited, which usually meant I would start using my parents' bathroom, because the sick person was almost always one of my sisters.
• I can remember at least a couple freak-outs over me getting a little food stuck in my throat. It wasn't even enough to make me cough, but I still feared it meant I was choking, and that could lead to vomiting. One day my mom explained to me that I wouldn't be able to breathe or talk if I was choking, so then those panics stopped.
• I became extremely opposed to taking vacations with my family, because someone would usually get sick on them. When I vomited last, I was on one of these vacations. I also once had to spend eight hours in a car with my family after one of my sisters had almost vomited that morning.
• I would miss school because of my stomach hurting. From second to fourth grade, this happened rarely, about twice a year. In fifth grade, I had a period of about two weeks where I went home or stayed home every day. Each time I tried to go back, my stomach would hurt again as soon as I got into class, and I would have to leave. Since I was perfectly healthy, people were all over me asking what was "really" wrong, but I didn't know what to tell them, because I had no knowledge of anxiety at that point. In the years after that, I still sometimes went home "sick" because of panicking about something I imagined I felt, but never that many days in a row. I would say it was probably about seven days a year, spread out.

Those are all the signs I see looking back, and I imagine they'd be similar for any child developing this phobia. Not that I'm in a position to give parenting advice, but I would hope that any parent who saw their child exhibiting such irrational and anxious behavior would sit down with them and try to talk to them about it. And then if it does turn out that they fear vomiting, get them some counseling. I'm sure it's much easier to get something like this under control at a young age, maybe even cure it completely.     

family

I still have a cold. I guess all that zinc and vitamin C I ingested did nothing but delay the onset? I felt mildly unwell for a while, but then the last three days have been horrible. Hopefully I'm on my way to recovery now. This is getting really old.

Anyway, I wanted to write about a minor achievement, if achievement is even the right word for it. It feels like it to me. About a month ago, I told my older sister about my phobia.

Technically, this is the second time I've attempted to share this with a family member. When I was 13, I told my mom about it. I gave her the name, explained it as best I could. We had a conversation about it. I don't remember much of the conversation, but I know it lasted for a while, and I remember my mom doing a lot of nodding. My parents are not equipped to deal with mental issues of any kind, so I should have known better. Nothing bad came out of it, but nothing good did either. My mom never mentioned it again. The next day, it was as if the conversation had never happened, and I was not willing to "remind" her. So to be honest, I am not sure if she actually forgot or just didn't want to deal with it. I'm sure she has forgotten by now.

I had a series of failed attempts to communicate with various family members. That wasn't the first or the last. Eventually I gave up and then became uncomfortable at the thought of sharing anything the slightest bit personal with any one of them.

But I decided to mention the phobia to my older sister, and I actually got a legitimate decent response. She was nice about it and said that she knew someone else who had the same phobia, and then she told me one of her own fears.

I know I shouldn't be as surprised as I am. It's like I am always expecting the same family dynamic that existed when I was a child/teenager, but my siblings and I are all adults now. Obviously things would be different and better. Which is awesome. I really like the idea of not having to hide everything about myself.

wisdom teeth

Not much has been happening. My anxiety has been extremely manageable since we got back home from the trip. I'm amazed - I definitely wasn't expecting things to go this well. But since they are, and I have nothing new to report, I'm going to post an old story. I got my wisdom teeth removed about two years ago. It was an experience I was dreading, because I felt sure it would put me in danger of throwing up. But it actually turned out completely fine, and I consider it one of my greatest successes ever. I'm so glad I didn't chicken out, because now I know I don't have to worry about them ever again.

So it started out with a consultation with the dentist who was going to perform the surgery. That part was awful. He was definitely not skilled in dealing with anxiety issues. I had envisioned that the consultation would be in a quiet back room with a closed door, but it was in a little examining room right next to the front desk, and he left the door open the whole time. And he talked incredibly loudly. I was of course trying to get all my points across the same way I had rehearsed them earlier, but after I mentioned the phobia, he started talking (shouting) about the possibility of me getting sick and how I was afraid of getting sick, and I was very aware of the fact that the people at the front desk could hear every word. I guess dentists don't expect you to be self-conscious.

He didn't have any comforting information either. He said that even prescribing me a strong anti-emetic might not keep me from getting sick, because 1) most people get sick immediately after the procedure before they've had a chance to take it and 2) people won't usually take it until they start feeling nauseous. Plus if they are going to sedate you, any kind of sedation makes you nauseous, so he said they already add anti-emetic to the drip and that none of it is any guarantee. Then he said 5% of people or 1 in 20 will throw up, and usually it is from the pain medication. He recommended sedation for me, based on my X-rays, and he said he thought everything would be uncomplicated for me. But obviously he didn't see the vomiting thing as a big deal, no matter how much I tried to make him see it that way. He prescribed me two anti-emetics, a regular one and then a more expensive one that he said was super strong. This was my first experience with prescribed anti-emetics. I later found out the super strong one was Zofran. Of course I planned to use that one, because I wanted the strongest one possible.

I was pretty freaked out when I walked out of there, but it still seemed like I could possibly avoid getting sick. I decided I would take the anti-emetic before the procedure, I would not be sedated, and I would not take any prescribed pain medication.

The morning of the procedure, I took the Zofran before even leaving the house. It dissolved on my tongue easily and tasted okay but had kind of a bad after-taste. I didn't notice any bad side effects from it either. I also had three 45-minute Kathy Griffin comedy routines on my iPod so I would have something really hilarious to distract me during the surgery.

The first thing they did was put two giant Q-tips in my mouth with a bad-tasting goo on them to start numbing my mouth. Pre-numbing to get me ready for the long needle that really numbs you. Then the doctor gave me about eight shots with the long needle. I only felt an uncomfortable pinching sensation. After that, they told me good job, I had gotten through the worst part of it. I did not believe them. But it was true. I felt no more pain after that.

I was left alone for a while, and my mouth, lips, chin and even the sides of my face up to my ears got extremely numb. Then the doctor came back, and he and an assistant went right into the procedure. It all started so fast I hadn't had time to start my iPod, so I was fumbling with it while they continued shoving tools in my mouth. I finally got it playing, and as soon as I did, I shut my eyes really tight because I knew it would be bad to see anything that was going on. They started drilling, and the drill was so loud I couldn't hear the iPod anyway. I was just catching snatches in-between, and I couldn't really concentrate on it, because I was focused on the pressure and the sounds and wondering exactly what they were doing to me and marveling at the idea that they were hurting me extremely badly, but I could not feel a thing. They were having a pleasant conversation the entire time. I wasn't really paying attention, but they were laughing and talking like they were just sitting down having coffee.

I only had two wisdom teeth, both on the bottom. They started with the right side, and after probably three to five minutes at the most, they stuck a wad of gauze in there and switched to the other side. I wondered if they were done but couldn't really believe it could be so. They spent the same amount of time on the left side, and then they stuck a wad of gauze there too and said I was finished. I "said" (mumbled) "really?" and they said yes, and the doctor said that I definitely wasn't a patient that needed to be sedated, and that most people needed to because they couldn't handle the stress of it. I was shocked by all this, shocked that it was over, shocked that I was pretty comfortable the whole time, shocked that they were making it sound like I was one of their least anxious patients.

That was it. Then the assistant gave me a speech about how to take care of my mouth and what I should eat that day (cold, soft foods). I had a bunch of questions I wanted to ask her, but I couldn't speak. I don't remember what they were, but I guess they weren't that important, because it all turned out okay. Later on, when the anesthesia wore off, my mouth felt extremely sore, but it was not the terrible pain I had heard described by other people. I think I took some Aleve for the pain, nothing else.

The end. I know the experience will be different for each person, but I wanted to share my happy ending. Everyone I had ever talked to about it had made it sound like a nightmare of excruciating pain and unavoidable sickness. Maybe I got lucky, or maybe people just love to exaggerate this type of story in a bizarre "whose life sucks more" competition. I couldn't say for sure. With all the horror stories, it was only my fear of facing worse problems in the future from not getting the teeth removed that pushed me into it, but I'm really so glad I got it over with.

more on road trips

The test run drive went really well. I didn't even need to get out my written affirmations. It was a quiet, non-stressful drive. Most of the time we were surrounded by farmland. On the way there, I could feel the anxiety start in my stomach at times, and I just tried to bring my attention back to the external world - the music playing, the scenery. I read somewhere (no clue where, my brain is way overloaded with self-help books and websites) about playing a game with yourself to calm down where you look for something that starts with the letter "A", then the letter "B", etc. So I used that to distract myself too.

Sometimes when I start to "feel sick" I view it as a kind of black and white transition where I've left the realm of calmness / happiness, and that's it - now there's no going back. But on this drive I happened to be able to tap into logic (for once) and realize that only a few seconds had passed between feeling absolutely fine and feeling "off" in some way. Obviously I still was absolutely fine and was able to return to feeling that way with a little effort.

I felt a little "sick" after eating in the restaurant too, but it didn't last long, maybe about five to ten minutes of the drive back home. All in all, I'm super pleased with how it went, although I do keep thinking about how tame a challenge it was compared to the much longer trip coming up. My main areas of concern are:

-- the drive itself. We'll be on the road longer, there will definitely be more traffic and crazy drivers. Plus having to eat during the drive.

-- staying in a hotel. The last time I actually threw up, I was in a hotel, on vacation with my family. I know some emetophobes have bad associations with certain foods because they were sick after eating them. That didn't happen to me, but I guess I associate hotels in general (well, they do all look alike and smell alike) with the experience and feel slightly unsafe in them.

-- I'll be meeting my nephew for the first time. He's a little over a year old. I might have to hold him. Part of me really wants to. I've loved him since the day he was born and the first pictures went up on facebook. But part of me worries he will spit up on me. Or get sick on me? At what age does it stop being called spit-up? I have no clue, but really it makes no difference to me.

-- eating in general on the trip, eating away from home, eating around other people. I need more practice with this.

We are planning to have a couple more of these "test run" trips, if we have time to fit them in. The goal for the next one is to go eat somewhere and then go out shopping instead of coming straight back home.

obligatory introduction post

It feels strange to give a background / explanation of something that has been with me my entire life. Chances are you already know something about emetophobia anyway, if you're here, and there are plenty of websites that explain it. Best of which, in my opinion, is this one. I'm not sure about the reliability of the rest of that website, but this FAQ was the first thing I ever stumbled across that made everything make sense to me.

I have no idea what caused my phobia. I have no memory of a traumatic experience involving me or someone else vomiting. I was 9 the last time I actually did throw up, but I must have already had the phobia at that point or was at least on my way to developing it, because I can remember times before that where I acted in weird ways. If my stomach hurt, I would crouch down on the floor if possible, because I thought that made me safer. I would try to hide from my teachers the fact that I felt sick, because I felt it was something shameful. If eventually my anxiety overwhelmed me, I would suddenly blurt out that I didn't feel well and needed to go to the nurse, and the teacher always looked taken aback. At some point in my childhood, I became scared to touch food at all, even after washing my hands, and went through a phase where I ate like a dog, holding my plate or bowl up to my mouth.

I was around 11 or 12 when I started researching online and found the FAQ website linked to above, but it took several more years before I really felt like I had any control over what was happening to me.

So moving on from history, this is business-as-usual nowadays.

-- I feel "nauseous" almost every day. This fake "nausea" is really anxiety, hunger, normal feelings of digestion, indigestion, heartburn, etc. It's hard for me to tell the difference between these and to identify my current feeling correctly. It's gotten easier over the years. But I still frequently get nervous that I am in danger of throwing up, especially if I "feel sick" in public. It's even hard for me to tolerate non-stomach pains, like a headache or general muscle soreness, since I will interpret these as signs of potential illness.

-- I think about the safety of my food a lot, the potential to get ill from food poisoning. This leads to avoiding certain restaurants or types of food that don't seem "safe" to me, throwing food away that is most likely still fine because I worry it has gone bad, or feeling anxious after consuming certain foods that seem high-risk to me. I also have a long list of foods I avoid eating before going out in public or while out in public (anything spicy, greasy, rich, too filling, too sweet - aka anything that could make my stomach hurt). This makes eating on long car trips and vacations difficult. Grocery shopping is also kind of a pain, because I inspect everything I am buying, and if anything looks weird or "off" to me (like an apple with a spot on it), I usually can't bring myself to get it.

-- Eating in restaurants in general doesn't work out that well. It's rare that I can get through an entire restaurant meal without "feeling nauseous" from anxiety.

-- I can remember times when I was young and threw up in the middle of the night, right after waking up. So I consider sleep to be a time where illness can sneak up on you and make you vomit before you have a chance to stop it from happening in some way. Because of this, it's hard for me to fall asleep if I don't feel well. I also frequently wake up in the middle of the night and "feel sick" - I'm guessing this is usually just hunger, since sleeping is also a long stretch of not eating.

-- I do not drink alcohol at all and avoid being in places/situations where other people are drinking (excessively to the point of drunkenness, I mean).

-- I avoid being around children, since they are much more likely to have some illness and/or be vomiting.

-- I keep a store of anti-emetics, Pepto Bismol, and Tums at home. This hasn't always been the case. I have always been extremely strict with myself about using these things, because I remembered reading that emetophobics could become dependent on them or abuse them to the point of unhealthiness, and I never wanted to allow myself to reach that point. But this past year has not been the best for me, and I have become (slightly) more lenient about it. I also just don't like putting anything out of the ordinary in my body, even something as harmless as Tums.

-- I avoid traveling in general and public transportation. I don't have a problem with motion sickness as far as I can tell, but my anxiety will lead to me feeling "sick" anyway if I am on a boat, plane, or bus. Trains and cars, not as much, depending on the situation and who I am with.

-- I am afraid that if I get a tickle in my throat or have a coughing fit, this could lead to throwing up, so I tend to carry a water bottle with me everywhere I go just in case this happens.

-- I ask my wife at least once a day if I am sick or if I have a fever. Or I will ask her while eating or directly after eating if she thinks the food is likely to make me throw up.

-- When my wife is sick, I don't take care of her. I keep my distance as much as possible. One time when she had a stomach virus, I went to stay with a friend and didn't come back until I was sure she was better and she had decontaminated all our belongings.

I think that's about it. I can't say I diligently stick to any of the behaviors in the above list, because I am always trying to challenge myself when it comes to this. Ever since I realized I had emetophobia, I have tried to keep the momentum of a normal life going, mostly by pushing myself to keep going out places. Keep going to movies, to restaurants, to school or work. My tendency is to want to be home all the time where I'm safer. I currently work from home, which I think has led to me losing some of that momentum. I don't go out enough anymore. But I'm determined to fix this.

Which is the main point of this blog, I suppose. To force myself to do the things I am afraid of doing and then write about how successful I am. There are so many ways I am successful already (some emetophobics can't even speak/write the word "vomit" or watch vomit scenes on TV), and I know I can do even better than I am doing now. Will I ever be completely cured? Most days I think absolutely not. But it's not just "cured" or "not cured," it's an entire spectrum of fear, and reaching the perfect positive end of the spectrum doesn't matter so much to me as long as I am able to function well enough in order to do all the things I want to do in life.