Here on the blog, I feature a bi-weekly interview with an expert on how to write about a character with a chronic illness or disability that they struggle with. While I still recommend getting a sensitivity reader for your work, use these posts to consider how you can accurately portray disabled characters. Today’s feature is anxiety with Fay Onyx. Shout out to Fay for taking the time to answer my questions.
1. Please introduce yourself! What are your symptoms? What is your daily life like?
Hello, I’m Fay and I am a highly sensitive person (a trait also known as sensory processing sensitivity) with misophonia, generalized anxiety, panic disorder, and mild depression. While I am here to talk mainly about my anxiety, it is not possible to completely separate the different parts of how I think and experience the world from each other. In particular, my sensitivity and panic disorder are hard to separate from my anxiety, so I will be speaking about them too.
Both a Limitation and a Neutral Difference: There are two main ways to think about disability: as a limitation and as a neutral difference, something that is neither good nor bad. Thinking about disability as a limitation goes along with the medical perspective of disability—that it is an illness to treat. In contrast, thinking about disability as a neutral difference goes along with the social model of disability. This model emphasizes the role society plays in creating disability through barriers, like inaccessible buildings and negative stereotypes.
Interestingly, I experience my anxiety both ways. My anxiety feels like a limitation when an anxiety trigger sends my mind into a spiral that makes it hard for me to function for the rest of the day. However, when I’m not experiencing a state of intense anxiety, I experience my anxiety as an integral part of the way my mind works that brings both gifts and challenges.
My brain is really good at analyzing things. When I think about something, both the big picture and all of the small details are clear and I can see all of their interconnections. I think of things from lots of different angles and my mind races through many different possibilities. All of this can be amazing and extremely useful. The thing is, my brain is always thinking about things this way. It doesn’t turn off—this is just the way I think.
While it is great to be a good planner, I plan everything carefully and that can be a lot. For example, doing new things takes a lot of capacity because I’m not comfortable without at least a tentative plan. In addition, people sometimes ask me questions they think are simple, but they aren’t simple for me. Then, when working through things takes significantly more time and effort than expected, people get frustrated.
It hurts when people get frustrated with me for something that is a core part of who I am. And it hurts when people misinterpret my careful planning and problem-solving as me trying to shut down conversation by making up an endless series of excuses. What people don’t understand is that I really do have twenty different worries and concerns about their “simple” idea. If we talked about each of them, we would eventually get through them all. But, far too often, people treat my concerns as excuses and I feel uncomfortable, pressured, and shut down.
When the planning process starts with the problem and brainstorming multiple options for addressing it, planning with other people can go well. Other people tend to do better when multiple ideas are being compared, because that naturally brings both their benefits and limitations into the conversation. When this process goes well, great results can be achieved.
Another thing that is hard for me is that our world is full of struggles and suffering. For someone with a brain like mine, all the things that are wrong with the world form an overwhelming, interconnected mass. Being so sensitive makes it even harder. I have to drastically limit how much news I get from the outside world because knowing every bad thing that is happening makes it hard for me to function. So instead, I avoid news and trust my family to tell me the things that I need to know in minimal detail. Meanwhile, I focus on using my unique strengths to make the world a better place by creating tools that help people represent disability respectfully.
I don’t know how often other people experience anxiety in a similar way. While it is true that I haven’t heard other people talk about their anxiety this way, Western medicine teaches people to view anxiety as separate from the rest of who they are, so I’m guessing that a lot of people with anxiety haven’t had a chance to think about it in other ways. To me, this is a shame because understanding how my anxiety connects to my mental strengths changes how I feel about myself as a person with anxiety. Knowing that my anxiety is connected to parts of myself I deeply value makes it easier to love and be compassionate to the anxious part of myself.
“Knowing that my anxiety is connected to parts of myself I deeply value makes it easier to love and be compassionate to the anxious part of myself.”
Highly Sensitive: My sensitivity is another trait that is a neutral difference. It has both benefits and down sides. I notice all sorts of little things that other people don’t, especially things that have the potential to become problems, like a precarious stack of dishes or an unexpected sound. Clearly there are some interconnections with anxiety here.
It is as if my brain has a super sensitive monitor for things that could become problems, and I notice them everywhere. This is both good and bad. It gets overwhelming pretty easily. I spend more time than I’d like rearranging unstable stacks of dishes, clearing items out of pathways, and checking on unexpected sounds. At the same time, these things do have value. Fewer dishes break and people trip less often. And, every so often, unexpected sounds do mean danger.
One spring night three years ago, our heating system cut off suddenly part way through its usual cycle. I noticed that the sound hadn’t followed the usual pattern and went downstairs to check on the heater. When I got there, I could smell gas.
It turns out that the regulator of our heating system had just broken and caused a gas leak. Because I noticed it so soon, my family was able to turn off the gas and leave the house. Our whole family of four adults, one baby, and a cat crowded into the car and read a book together as we waited for the gas company people to come check our house.
My family got out of a dangerous situation because I was sensitive enough to notice a change in a background sound and anxious enough to check on it right away.
Sensitivity is a key feature of my life. I can taste nuances of flavor that other people in my life can’t. It surprised me the first time I learned that not everyone can taste the difference between a fresh glass of water and one that has been sitting out for a couple of hours. To me there is a big difference in flavor.
Knowing this, it is perhaps not surprising that in my world there is such a thing as “too flavorful.” Strong flavors can overwhelm me and make it hard to eat because my eating slows down to a painful crawl as I try to process the intensity. The foods I like best are on the milder end of the flavor spectrum—foods that less sensitive people might consider bland.
My sensitivity affects me in a lot of other ways. For example, I’m easily overwhelmed by sensory stimuli; I like noisy environments and crowds, but I need to rest after experiencing them. When I can, I avoid overwhelming situations. Uncomfortable clothing bothers me a lot, so I buy most clothing for comfort first. I regularly notice beauty, especially the beauty of nature. I’m insightful and think about things deeply. Cloudy days are soothing to me and bright, sunny ones are mildly unpleasant. I’m a cat person because cats express their affection in (comparatively) calm and subtle ways. I have a rich and complex inner life. I’m careful. I notice things and am good at finding lost items. Distractions really bother me. I’m strongly affected by stories and cry at even mildly sad scenes. Finally, I thrive when my schedule is less busy and I have more time to focus on each project.
My anxiety is deeply intertwined with this sensitivity. Conflict affects me deeply, as does not knowing how someone feels about something. On top of that, I get stressed and overwhelmed easily. Even mild anxiety triggers affect me strongly because my sensitivity makes me feel them deeply. In addition, smaller anxiety-provoking things, like the landlord not liking how we are maintaining the yard, really get to me.
Mental Cycles: A mental cycle is a repetitive pattern of thoughts that keeps looping back on itself. A particularly common one for folks with anxiety is obsessively analyzing an uncomfortable social situation. It doesn’t matter how minor an interaction is; if there was something about it that felt uncomfortable, my brain will want to go over it again and again, trying to assess the other person’s tone, what they meant, what they were feeling, whether I upset them, what I did, whether my behavior was an okay thing to do, and what I could have done differently.
This cycle is loaded with intense feelings, like embarrassment, fear, self-consciousness, panic, guilt, and shame. Hidden among these feelings is harsh self-judgment. Frequently, this self-judgment will disguise itself as one or more of the feelings, especially embarrassment, intense self-consciousness, and shame. These hidden judgments are things like, “There is something wrong with me,” “I’m hurting people,” “I’m not good enough,” “I’m broken,” “I’m defective,” or “I’m a burden.”
My mental cycles are often related to uncertainty and lack of control. For example, I’m usually uncertain about what other people are feeling and I can’t control what other people think of me. Situations that emphasize either of these two things tend to create stronger cycles. This is why uncomfortable social situations trigger a strong mental cycle. It is like my mind, which is usually compassionate toward myself, short-circuits into wanting to do anything to make the uncertainty go away. Since my behavior is the only thing I can control, my mind attacks me, trying to find a problem—something it can change to make things certain and controllable. But because that is impossible, my mind just keeps cycling around and around.
The exact mental cycles that each person’s mind does are individual, as is what triggers them, but uncertainty and desire for control tend to be major factors. These mental cycles are self-reinforcing and hard to break out of. Interestingly, reassurance is often part of these cycles because reassurance usually follows along the same mental lines as the harmful thoughts it is trying to oppose. As a result, it actually reinforces them. For example, answering the judgment, “I’m a terrible person,” with the reassurance that, “I’m not a terrible person,” means that the thought, “I’m a terrible person,” is being repeated. This repetition reinforces the harmful mental pattern.
Breaking out of a harmful mental cycle involves things like setting judgments aside, remembering a time when I felt differently, and reframing the situation. Of these, reframing is especially useful to know about because it is a way to be reassuring that doesn’t reinforce the harmful pattern. Reframing is finding an alternative way to interpret things. To continue the above example, a reframing could be, “No one is perfect and it is okay to make mistakes. I did the best I could in the moment and will learn and grow from this experience.”
In addition to cognitive techniques, some medications make these cycles less frequent and less intense (they are easier to break out of or set aside). Both herbal medicine (lavender tincture), and psychiatric medications have helped me reduce harmful mental cycles, and I am currently using both types of medicine together.
Note that mental cycles are different than my usual pattern of thought. I don’t have a continuous track of self-criticism or worry running in my mind. Some people might, and others might have more frequent mental cycles. I can’t say for sure.
What I can say is that, in my mind, I have an ongoing, supportive conversation with myself where I talk myself through things, make plans, and react to things. This is part of being highly sensitive. I reflect on things a lot because it takes more time to process the things that happen. While some of my thoughts are worries, unless I’m in a stressful situation, these worries are only a small fraction of my thoughts.
The two main things that disrupt my usual, supportive self-conversation are intense fear caused by stressful events, like an upcoming dentist appointment, and mental cycles triggered by stressful social situations. However, as I do self-care and start to calm down, my supportive self-conversation starts to come back. It helps to have a good topic of self-conversation, like an art project I’m working on. This helps me get back to a more normal mental space.
Breaking out of a harmful mental cycle involves things like setting judgments aside, remembering a time when I felt differently, and reframing the situation.
Panic Attacks: In true emergency situations, my mind is clear and intensely focused on taking action. This is an almost emotionless emergency mode (emotions come later) where the only thing that matters is reacting to the emergency. Though there is a surge of adrenaline, I’m barely conscious of my body or how the adrenaline is affecting me. This is an intense experience, but it is very different than a panic attack. Emergencies are not times when I have panic attacks.
In stressful situations that aren’t emergencies, like conflicts or doctor appointments, I am more aware of my feelings and body. If the situation is intense, I will feel a rush of fear though my body. My heart races, my body feels tingly, I might be light headed, and I might feel hot and cold. This is more similar to a panic attack, but this intense anxiety state is not a panic attack.
For me, panic attacks usually happen later, when things are calm and I feel safe. Most often, they happen the second night after an intensely stressful or overwhelming situation. Panic attacks are especially likely if something about that situation doesn’t feel resolved. My panic attacks usually happen when I’m falling asleep, or when I wake up from a dream. It is like my body waits until it feels safe to process through all of the lingering stress and fear that got trapped in my body during the stressful event.
I have panic disorder, so I’ve had enough panic attacks to notice the way the exact symptoms of each panic attacks varies. Usually it starts with my heart racing, sometimes alarmingly hard and fast. When my whole body starts to feel different, I know that a panic attack is definitely starting. This difference is hard to describe. It is like something inside me has shifted. I feel a bit distant from myself and my body. My chest and belly subtly tighten so that my breathing is more shallow and rapid, a change that can lead to overbreathing and hyperventilation. Even when I avoid hyperventilation, I am often lightheaded. Next, I get cold and start to shiver. I feel shaky.
All of these intense physical sensations are frightening. I feel overwhelmed and out of control. However, I work hard to be calm, alternating between connecting to the present moment with orienting techniques and acknowledging the intense experiences that my body is working through. For more intense panic attacks, it really helps to have someone with me, especially if I start to hyperventilate. Not being alone feels less overwhelming, which matters because hyperventilation is overwhelming and frightening, and fear encourages the hyperventilation. Another tool that some people have access to are benzodiazepine drugs, like lorazepam, that can be taken at the beginning of a panic attack to calm things down make it less intense.
Key aspects of panic attacks that make them different from intense anxiety states are that panic attacks usually happen without immediate triggers (see the next section) and they can happen when I’m feeling calm. Panic attacks are shorter and more physically focused than intense anxiety. Also, in a panic attack, the fear and anxiety come out of the overwhelming physical experience, rather than from anxiety-producing thoughts, as they do with an intense anxiety state. Physically, there are a lot of similarities, such as a racing heart and shallow breathing, but I get cold and shivery during a panic attack and my shallow breathing can lead to hyperventilation, neither of which happen with intense anxiety.
The exact experience of each panic attack varies. Some start suddenly with a tingly rush of sensation that moves through my body as it sends me into panic mode. Sometimes I wake up from a dream and my heart starts pounding. Other times, mild symptoms gradually get worse in a slow spiral. For example, this can start with the feeling that I can’t quite breathe comfortably. This makes my brain focus more on my breathing. As my focus on my breath increases, my breathing shifts to a cycle that is shallower with longer inhales, gradually working its way toward hyperventilation. There are techniques that I can use to disrupt this cycle, but if I am tired and out of it, then it is hard to use them, and this cycle can lead to a panic attack.
When I’m doing better overall, I tend to have milder panic attacks. These are less intense and they often have longer periods of pre-panic attack symptoms that give me an opportunity to disrupt the cycle with things like orienting techniques. Examples of pre-panic attack symptoms are my mind fixating on my breathing, getting a slightly flushed feeling on the back left side of my neck, or my breathing becoming shallow.
Even thought panic attacks don’t usually have triggers, there are things that can trigger them for me. The main trigger is wearing any sort of mask that affects my breathing. Things that affect my breathing focus my attention on my breath. If the mask in any way restricts my breathing, like making it a bit harder to breathe or collecting carbon dioxide from my exhales, a feeling of discomfort builds until I feel like I can’t breathe (a feeling very similar to hyperventilation) and I start having pre-panic attack symptoms.
With COVID, this difficulty with masks has made it impossible for me to wear a fabric mask for any length of time. I wasn’t able to go anywhere until I got a face shield. Unlike a mask, the face shield doesn’t protect me from other people, but it does protect other people from me. So as long as other people are wearing masks, I’m okay. It isn’t a great idea for me to go most places, but I can have people over to my house.
I live in the Pacific Northwest, so my inability to wear a mask is an even bigger problem when there is smoke from wildfires in the air. Because I am very sensitive to smoke, when smoke is in the air, I pretty much have to stay inside, making extensive use of air purifiers.
Another important characteristic of panic attacks is the way they can build into cycles. For example, my panic attacks seem to be responses to overwhelming situations. Because panic attacks themselves can be upsetting and overwhelming, this can easily develop into a self-perpetuating cycle, where my body responds to an overwhelming panic attack by having more panic attacks.
One definition of trauma is any experience that overwhelms our ability to cope, and bad panic attacks can absolutely do that. This means that trauma responses can be involved in these cycles. For example, if I had a bad panic attack at bedtime last night, then at bedtime tonight I might be mentally or physically afraid of it happening again. That fear makes it more likely that I’ll have another panic attack and can even trigger me into the early stages of a panic attack.
These cycles tend to have feedback loops. When things are getting worse, it is easier for them to keep getting worse. And when things are getting better it is easier for them to keep getting better. Over a longer period of time, this results in a cycle where I have one or more bad weeks, followed by several weeks of things getting better, followed by a month or two of things being better. Then things get worse again.
I’ve had to develop a lot of skills and techniques (combined with medication) to disrupt this cycle. Techniques that are designed to help with trauma have been especially helpful to me, such as handling triggers by validating the feelings, orienting to my present surroundings, and then reframing the situation.
The more negative emotion that is built up around the panic attack itself, the more likely it is to cause a repeating cycle of panic attacks. This isn’t easy, but reframing the situation by thinking of panic attacks as my body trying to help me process difficult emotions helps. This gives me something positive to focus on—my body is trying to help. Other useful tools are journaling about difficult emotions before bedtime, meditation, and having a calm distraction ready (distracting from mild pre-panic attack symptoms can be helpful).
During a panic attack, alternating between orienting and asking myself what emotions and overwhelming experiences are underneath this panic attack is a helpful way for me to move through it and calm it down. Talking aloud naturally has short inhales and longer exhales, so talking is another useful tool that can help me override unhealthy breathing patterns and can even help me come out of hyperventilation. Because being cold makes difficulties with breathing worse, I use blankets, hot water bottles, and heating pads to warm up. It also helps to have someone else present, so that I’m not alone.
I do want to point out that the way panic attacks feel, as well as their frequency and timing, varies from person to person. I get the impression that my panic attacks are longer and slower than those some folks get. For some people, panic attacks can be extremely sudden and intense. In more extreme cases, panic attacks can make people pass out (once they are unconscious their breathing resets to normal and the person is fine). Panic attacks can also make people feel like they are having a heart attack. I used to get ones that made me feel like my heart had stopped, because I would feel my heart racing and then that intense heartbeat sensation would suddenly stop (usually when I was starting to calm down). Suddenly not being able to feel my heart beating was unnerving and I had to work hard to convince myself that I was okay. This illustrates the fact that these things can change over time, because I haven’t had this type of panic attack in a while.
Anxiety Triggers: For me, an anxiety trigger is a situation or action that immediately causes a sudden, big increase in my anxiety symptoms. When I get triggered, a sudden rush of fear floods through my body. More intense triggers can put me into a mental fear state that lasts for days, while even mild ones take an hour or more to calm down from. Anxiety triggers are connected to harmful mental cycles. Certain harmful mental cycles have specific triggers of their own, while others are caused by my brain trying to cope with intensity fear by harshly examining, criticizing, and controlling myself.
For me, triggers are created by upsetting and overwhelming situations that are unresolved, like a conflict that hasn’t been worked out, something upsetting I can’t prevent, an upcoming event I’m dreading, or an unhealthy situation I feel trapped in. For example, last year I had a psychiatrist who did things that were not okay. Interacting with her became an anxiety trigger for me. Any time that I got a message from her, or had to communicate with her in any way, fear would flood through my body. My heart would start racing and I would get shaky. Afterwards it took a lot of time and self-care to calm down. This was such a bad situation that just talking about her was somewhat triggering.
It is possible to work through anxiety triggers and diffuse them over time. After I got a new psychiatrist, I still got intensely anxious before appointments. However, I spent a lot of time on self-care both before and after each appointment with my new psychiatrist. With every appointment that went well, things got a bit better. Now, instead of spending the week before each appointment dealing with periodic surges of intense fear that are hard to calm down from, I only get moderately nervous the day before my appointment. That is major progress.
There are several tools that I use to cope with and diffuse anxiety triggers. The first is a self-talk technique that I got from my therapist. It starts with validating the emotion, then goes to connecting to the present moment with orienting, and ends with self-nurturing. The second is a visualization technique where I imagine myself caring for and supporting (usually with a hug) my past self that was in the overwhelming situation that caused the trigger. For example, I can imagine going back in time to the last appointment with my previous, bad psychiatrist and hugging and supporting my past self in that moment. Repeatedly bringing love and compassion into the memory of an overwhelming experience has been a powerful tool to rewire my brain and diffuse triggers. I don’t yet have an article up about these specific techniques, but when I get the chance, I will write about both of them in detail in my anxiety tools series.
Once I have worked with the trigger itself, there are a range of self-care techniques to help myself calm down and shift back into an everyday, calm mental state.
Repeatedly bringing love and compassion into the memory of an overwhelming experience has been a powerful tool to rewire my brain and diffuse triggers.
Medication: The daily medication I take makes it easier to calm down after being started, upset, or triggered. Without the medication, my body doesn’t calm down from things on its own. I have to put conscious effort into doing things that help me calm down, like exercising, mediating, or watching my favorite feel-good TV show. Overall, on this medication, my mood is brighter, I don’t get stressed as often, and when I’m anxious it is less intense. Panic attacks are milder and it is easier to prevent them by using prevention tools, like orienting, when I feel the pre-panic attack symptoms start.
I still have all of the same anxiety symptoms as before, but things are less frequent and intense. That means that they don’t disrupt my life as much. However, these symptoms are still significant. If a neurotypical person had the symptoms that I currently do while on my medication, they would probably find them to be a challenge, but my life is already shaped to accommodate these symptoms (for example, my office and bedroom are calm, quiet environments) and I have a lot of coping tools. For me, this is the best I’ve been in two and a half years and I’m feeling good about it.
This medication also increases my appetite, which is good. Due to a combination of anxiety and depression, I’ve had problems with appetite my whole life. My body has a tendency to go directly from not being hungry to feeling dizzy and gross from lack of food. This is a significant problem that means that I have to be super aware of time and get food when I think I should be hungry. Once I have food in front of me, I usually start to feel hungry, so that helps. But having a poor appetite has other downsides, the biggest being that eating can be slow, sometimes painfully slow. This means that every single day eating takes up a big chunk of my time. Fortunately, my increase appetite from my medication has been helping. This problem isn’t gone, but things are better.
Even though I like this medication and it works well for me, going onto it was rough. At first, it made me super alert and awake, which disrupted my sleep for about a week. The second and third days were especially miserable. However, there were some times during those days when I was super productive because of how alert I was, which was fun. Once my body got more used to the medication, it began making me sleepy, starting about two hours after I took my daily pill. This sleepiness wasn’t super intense, but it lasted a long time and made it hard to focus. On this dosage, even if I took my pill at bedtime, I was low energy and tired all day, which made it hard to function.
Interestingly, this medication affects different neurotransmitters depending on the dose. Because I liked some of the benefits of it and knew that I had been super alert for a few days when going onto it, we tried increasing the dose. Excitingly, the sleepiness side effect went away. I am now more alert and energetic than I have been in a long time. Finally, I’m doing household projects which I have been wanting to do for over a year. I can’t describe how good this feels.
The main side effect now is that my sleep is easily disrupted. This isn’t awesome, because I already had some issues with insomnia to start with, but I have a different medication which helps me sleep. In addition, because I have more energy I’m able to exercise more, and that is improving the quality of my sleep overall.
For many people it takes trying multiple medications to find one that is a good fit for them. Because trying out a medication can take a month or more, this can be a long process. In my case, the fact that I go through cycles where things are better and cycles where things are worse makes it hard to compare medications. If I am doing better, is it because I’m in a cycle where things are going better, or because the medication is helping? It can take months for me to figure that out.
In the past, I’ve tried a number of medications that haven’t worked for me. One did absolutely nothing—it was like I wasn’t even taking a medication. A different one helped with my anxiety a bit, but it made my blood sugar super unstable and it made me intensely sleepy for several hours after taking each pill. This was was a problem because I was taking it every twelve hours and it would make me so sleepy that it was hard to keep my eyes open and focused. Also, blood sugar instability affects anxiety, so overall it wasn’t benefiting me that much. Another medication did more for my depression than my anxiety. It worked okay, but it wasn’t enough to help me address the panic attack cycles. Unfortunately, that medication had a pretty narrow range of effective doses, so I couldn’t just increase the dose to get more of an effect. If my symptoms had been milder I might have stayed on that medication, but I really needed something that would help with panic attacks.
2. What are some of your biggest frustrations living with this condition?
Two big frustrations are the difficulty in asking for accommodations for soft access needs and the hierarchical power structure of Western medicine.
Many access needs for anxiety are what I call “soft access needs,” which are flexible needs that can be met multiple ways. This is in contrast to “firm access needs,” which are relatively inflexible. My chronic back condition gives me a number of firm access needs, such as needing someone to lift heavy objects for me and needing physically supportive furniture. Because firm access needs aren’t very flexible, not having them met is a direct barrier that prevents disabled people from accessing something. However, this inflexibility does make firm access needs easier to explain and justify.
In contrast, soft access needs can be met in a variety of ways, and they can be met to a greater or lesser extent. For example, if a friend of mine is having a birthday party that they want to be accessible to me, they could keep the party small, make a quiet area for me to retreat to, or focus party activities on low-pressure, cooperative games. In addition, if all three of these things are done, the party will be more accessible to me than if only one of them is done.
The less a person’s soft access needs are met, the bigger the cost of participation is. Completely failing to meet soft access needs creates a situation where the cost for participation is so high that it becomes a barrier that prevents the disabled person from meaningfully participating. Part of the difficulty with soft access needs is that they are cumulative, so barriers are made from many things combined together, each of which the person could handle on its own. It is the combined effect of all of these things that makes the barrier too big to overcome. To continue the birthday party example, a rowdy group playing competitive games with strangers in a noisy, crowded space is not accessible to me, even thought I could handle any one of those factors on its own.
Soft access needs can be difficult to explain, and meeting them usually involves negotiation and weighing different options. In addition, there is little awareness of soft access needs and there are few, if any, models for how to ask for them and meet them. This means that it is often hard to know what to ask for. On top of that, we live in a culture that stigmatizes mental illness and rigidly pushes people to hide pain. Soft access needs around mental illness may not even be perceived as real, and asking for them can be stigmatizing.
Another frustrating thing is the hierarchical power structure of Western medicine. Doctors, psychiatrists, and other medical professionals are authorities with power. Meanwhile, patients only have access to the tests, treatments, and choices that their medical providers give them. Despite the fact that patients are experts too—experts in our symptoms, bodies, and experiences—we have very little power of our own.
I, like many other disabled people, have encountered ineffective and unethical medical providers. Most prominently, my former psychiatrist misrepresented herself to me. Not only did she not have the skills I needed, she hid personal beliefs that meant she would not be giving me the type of care that I needed.
This psychiatrist made a bunch of grand promises, then she made me wait while she did a bunch of tests for underlying health conditions. But I didn’t have any underlying conditions causing my anxiety. (I could have told her that, I’ve had anxiety my whole life and have previously been tested for underlying health conditions.)
Next, she had me try one medication. That medication did help, but it wasn’t enough. During this time, she kept saying things like “You are on the low end of this medication’s dosage, so we have a lot of room to increase it,” and, “You’ve only tried a few medications so far, so there are a lot of options to explore.” But when I asked for a dose increase to better treat my symptoms, it was like I had to prove to her that I really needed it.
When the pandemic started, my mental health got really bad. I was having intense anxiety and multiple panic attacks a day, including hyperventilation. When I reached out to this psychiatrist and sent her a message telling her how bad things were, she basically abandoned me. Without asking me whether or not I was getting exercise, she told me to “get my body moving” and get at least thirty minutes of exercise a day. That’s it. She didn’t ask me to schedule an appointment or anything. As far as I can tell, she didn’t know what to do or how to help, so she did nothing.
Fortunately, I had an amazing therapist. With her help, my family’s support, and a lot of perseverance and determination on my part, I was able to slowly improve my mental health to a point where I had the capacity to start looking for a new psychiatrist. Unfortunately, available psychiatrists aren’t easy to find. The majority of the psychiatrists in my area aren’t taking new clients and the ones who are tend to schedule several months out.
Because I had to wait two months before my first appointment with my new psychiatrist, I was forced to have one more appointment with my former psychiatrist. In this last appointment, based only on the fact that I was struggling intensely with anxiety, she told me that I was agoraphobic and refused to believe me when I told her I wasn’t. When I told her that I was spending most of my time every day doing self-care to deal with all of the anxiety I was having, she told me that she’d never heard of such a thing. Without asking me what the self-care was, she told me that I must be doing something to cause my anxiety.
This last appointment crossed from negligence and a bad bedside manner to actively harmful behavior. The only reason I went to it was that I needed medication refills to make it to the appointment with my new psychiatrist. The hierarchical power structure of medicine gave this bad psychiatrist the power to force me to have an appointment that was detrimental to my mental health during a time when I was struggling. It also gave her the power to get away with unethical behavior. And I’m lucky and privileged because I have a supportive family, an amazing therapist, health insurance, and the resources needed to switch to a better psychiatrist who chooses to use cooperative decision making. Because of all this, I am finally getting the care I need and doing better.
Read Part 2 of the Interview on May 5.
Fay Onyx is a queer, nonbinary, disabled writer, podcaster, and game designer whose work centers characters living at the intersections of oppression. Hir podcast, Writing Alchemy, includes a tabletop role-playing series about the adventures of disabled, neurodivergent, and chronically ill heroes. Fay is also the creator of Magic Goes Awry, a high fantasy role-playing game that is light on rules and heavy on magical mayhem. As a writer, Fay creates resources to help storytellers and game designers represent disability respectfully, including a monthly Q&A series, a Decolonizing Games Resource List, and a series of articles about harmful disability tropes.
Thank Fay for this article with a small one-time donation: https://ko-fi.com/S6S4BFL0