26: Sick While Autistic

Ah, cold and flu season. Never fun for anyone, but doubly less so for many Autistic people. I’m currently experiencing a particularly nasty virus and it’s been an interesting time reflecting on sickness while in bed with a virus for the first time since my diagnosis as Autistic. I’ve noticed a lot and it’s helped me unpack a lot of shame (and a little trauma) from a childhood of fairly frequent illnesses.

[Content warning: brief mention of trauma (in last bullet point), mental health complications of being sick (second bullet point).]

So let’s unpack some of it together, shall we?

    • First let’s consider that many Autistic people have chronic illnesses and conditions like fibromyalgia, chronic fatigue/M.E., Ehlers-Danlos Syndrome, etc. We may seldom feel well on an average day, but may have learned to more-or-less cope with being chronically ill. Add in extra unpleasantness that only exacerbates our symptoms and we are champions for getting through any additional illness.
    • Consider also that many of us also have chronic mental health obstacles like anxiety, depression, PTSD, and more. The point made above applies equally to mental illness. We have a lot to deal with on a healthier day and added illness makes that fight more difficult.
    • Give some thought too to the terrible sensory components of being ill: inflammation, pain, fever/chills, aches, pressure, various disgusting fluids, the feel of a stuffy nose, sweating, headaches, being more overwhelmed by sounds, changes in sense of smell or taste, etc. For someone with Sensory Processing Disorder, that can be a lot. It can be so incredibly overwhelming and can induce panic and anxiety attacks.
    • When sick, routines get chucked out the window. Many Autistic people thrive on the familiarity, predictability, and comfort of routine. One of our biggest comforts that allows us to mask and tolerate a good deal is suddenly and completely thrown out the window!!
    • Brain fog from feeling unwell makes it incredibly hard to mask and communicate. Masking and communicating as an Autistic person can be a near-constant game of mental gymnastics and being sick makes it even more difficult to play that game.
    • Everything listed above puts us several leaps closer to meltdowns and shutdowns. People who might ordinarily have a few a year might find themselves much more likely to have them. (Also see my piece on 2: Meltdowns & Pillars to understand why this is.)
    • We may experience extreme changes in our ability to do things we normally can. We may struggle to speak, regulate or identify emotions, eat unfamiliar foods, avoid meltdowns, communicate efficiently, etc. And those abilities may change rapidly and often while sick.
    • Lastly, consider the fact that many Autistics may have some level of trauma associated with being ill for a vast variety of reasons. I myself had several horrible bouts of illness as a child that were frightening for me. I also have gone through more medical testing than many people twice my age and things associated with being ill can make me incredibly scared and childlike.
    Phew, that’s a lot going on, right??

    So what can we as a sick Autistic or a caregiver of a sick Autistic person do?

    1) Validate and praise

    Really look at the list above of reasons why being sick as an Autistic might be extremely challenging:

    -If you are being hard on yourself, please try to be patient with yourself and validate your feelings. It’s really hard to be sick. You’re doing well, and you’re going to get through this! Make a list of things you’re doing well: taking meds, sleeping a lot, drinking fluids, keeping calm, etc.

    -If you are caring for an Autistic, please have patience. We might seem “dramatic” or “childish” from your perspective, but I challenge you to exercise empathy (lol here) and patience as you imagine what we may be going through. Validate the Autistic’s experience by saying things like “This is a really hard thing that you’re going through, but you’re doing such a great job. I’m proud of you for hanging in there.” Praise the efforts of the Autistic, even if they seem like small things to you. Do NOT make comments belittling the experience. If you need to, step away for a while (when safe) and practice some self care until you are calmer.

    2) Consider temperature, texture, and taste

    When ill, the very best things for me personally to combat the unpleasantness of sensory discomfort are the three T’s:

    Temperature: Using a cool washcloth or a heating pad can give me some feeling of control over my body and my pain. Drinking a hot or cold liquid can also help to ground me and take some panic away. Taking a shower or bath can help majorly too.

    Texture: Soothing stuffed animals, squishing silly putty, wearing fuzzy PJs, etc. are all small things that can make a big difference in keeping calm.

    Taste: Using hard-candies like peppermint can help remind the body to stay present! (Be sure that you will not fall asleep and choke!) Sweet drinks or teas help me a lot too as do flavored things like Jello or similar.

    3) Make a surrogate routine

    Keep whatever you can in a routine–mealtimes, bedtime routines, etc. But of course many things will not be able to happen as usual. Try to make a temporary schedule with similar activities. For example, schedule times to read together when English class would normally happen.

    If that fails, make a temporary schedule anyway! Examples of things to include could be: take temperature, take medicine, drink fluids, watch TV show, sleep, rest time, Skype friend/family, shower or bathe, sensory time, etc. Knowing what’s coming up with some degree of certainty can help so much and it’s great to have a reminder of when you need to take medicine and when you last drank fluids.

    4) Chart a sick calendar

    For whatever reason, I know logically that I will get well, but on some level, I don’t. Being sick is such an all-consuming, exhausting, and sometimes scary thing for me. I need reassurance that I will get well soon.

    One thing I suggest is printing a week calendar and asking a loved one or doctor to help write out things like when the illness started, benchmarks for when the Autistic will probably be able to do certain things again, and a goal when they will probably feel much better. Feel free to make the benchmarks a period of a few days if you worry about making false promises.

    Knowing how long you have to endure something is the biggest step toward tolerating it.

    5) Make being sick less awful

    Pamper yourself or the Autistic. Watch some TV or a movie. Eat something yummy you normally save for special occasions. Play some video games.

    Now is a time for rest and relaxation. Put off whatever you can until another day. Those emails will still be there when you’re well. So will school projects and deadlines. If something is overwhelming, put it aside and do something to “indulge” in being sick: take naps, play games, etc.

    Take care of you because you are so so important.

    [Featured image description: A green plant with thin, long leaves with white and pink spots that look like chicken pox. Text reads “Being Sick as An Autistic Person”]

25: I have an eating disorder.

Trigger and content warning: eating, food, weight, eating disorder, bingeing, restricting, treatment, recovery.

I have an eating disorder.

It’s taken me a full year to reach a place where I can say that sentence out loud, but now that I have, I feel a tiny piece of its hold on me slowly peeling away. I was diagnosed well over a year ago, but have only started the nitty-gritty of treatment very recently.

So why am I writing about it on my blog?

Well, for one thing, my blog is a place that I can go to write what I’m feeling and it helps me to process things in a constructive way. In a big way, this space has always and will always be for me. A big part of Seeking Sara is unraveling myself and finding out who I am inside. (Alexa, play the Mulan soundtrack!)

But I also want to be open about it because if it weren’t for people in my life being open about their own struggles, treatments, and roads to recovery (including potholes along the way), I never would have been brave enough to seek help. So another massive reason I am being open about this topic is in order to reach out to others to say, “You are not alone.”

The last big reason I am writing about my disordered eating on Seeking Sara is that it is not unrelated to being Autistic. I began subconsciously, (then more consciously, but to my deep shame and suffering) using food, bingeing, restricting, and overall disordered eating to cope with sensory overload, to avoid meltdowns and shutdowns, and to find some sense of control in my life.

Bingeing has become a type of self-harm stim to me. Restricting has become a way to control at least something in my life when I so frequently am overwhelmed by the world around me, not to mention my various health issues and disabilities. But these are not healthy or productive ways to cope. The fact that I can see that now is not a small baby step, but a giant, giant leap toward my long marathon run toward recovery.

One reason I avoided seeking help for so long is the uncanny ability eating disorders have to convince you that they are no big deal. Cycles of denial and acceptance are pretty much guaranteed companions during anyone’s treatment and recovery. I have no doubts that I will struggle back and forth for months–and probably years–to come, but now that I know that and accept that, it makes it easier to cope.

So how did I decide I really did have a problem I needed to address?

I’ve known for a long time, but the final tipping point was a journal assignment my therapist gave to me. The prompt was, “What is your relationship with food like? Write a letter as if it were a real person.” The two images below are my letter to food.

(If you are using a screen reader, please click the images. Alt-text is attached.)
An image of a purple notebook page with text on it. The date reads January 1, 2019. Above the date is a branch with red buds. Text reads, "Dear Food, We need to talk. My relationship with you has been unhealthy for 18 years. It's true that I can't live without you, but sometimes you make me feel like I can't live with you either. You are nourishment, energy, life, necessity. You are addictive, controlling, an unhealthy coping mechanism. I need you. I love you. I hate you. I hate that I need you. You provide me with escape... and yet I can't seem to escape you. The solace you provide is temporary and leaves behind regret, frustration, and a shame.
The second page of the letter reads, "Where you soothe, you also blister. You are a gulp of cool water laced with poison. We need to talk. We have 28 years to evaluate--18 of them troubled. You know I won't ever leave you, but things between us are about to change. I can't leave, but I can loosen your hold on me. I will no longer use you as a crutch that feeds me lies and self-hate. We need to talk. Sara." Beside Sara's name is a graphic of a pen. Under her name is a branch with blossoming red flowers.

Was I shocked by what I wrote? Extremely. What started out as a seemingly-silly therapy homework assignment that I was doing only grudgingly soon pulled emotions up from deep within me as the words cascaded onto the page. What I expected to be a few lines or bullet points in my journal turned into a chilling look at how I really felt. It captured the push-and-pull, back-and-forth, ebb-and-flow love/hate relationship that I’ve been running from since I was 10.

But, like I said: Denial and acceptance are at constant war within me. The next day, I was back to the complacent “I’m fine” attitude. But this time… I had something to look back on. I looked at that letter and felt those same feelings rising up in me again. And suddenly… I couldn’t turn back. I couldn’t go back to believing everything was fine…

But more importantly, I didn’t want to.

So what now?

Well, I’m diving in to treatment head-first with my therapist, continuing to journal (no matter how silly a prompt seems), talking with my loved ones who have eating disorders, doing seemingly small things like asking doctors not to tell me my weight, and reading lots.

I’m cycling back and forth between two books:

The simple yellow cover of Body Respect: What conventional health books get wrong, leave out, and just plain fail to understand about weight. By Linda Bacon and Lucy Aphramor.

1) Body Respect by Linda Bacon, PhD and Lucy Aphramor, PhD and RD (Amazon link here).

The pretty yet simple white cover of Life Without Ed: How one woman declared independence from her eating disorder and how you can too. By Jenni Schaefer.

2) The 10th anniversary edition of Life Without Ed by Jenni Shaefer (Amazon link here).

Cycling between the two has been invaluable to me so far. Body Respect challenges our views of weight, fatness, calorie counting, dieting and more, while Life Without Ed shows me that I am not alone, shows me recovery is possible, and teaches me very practical techniques that I can use.

Getting to Know the Enemy

One of the most important things I have learned from Life Without Ed so far is the concept of naming my eating disorder. By doing this, I can begin to separate out thoughts and impulses that are genuinely mine and which are from the eating disordered part of my brain. It also gives me something to roll my eyes at and tell to go away!

One exercise I did once I named my disorder was to write down all the things it says to me. Once again, what I thought was kind of a silly activity turned into me easily writing a page and a half of terrible things that it says to me–and has done for 18 years. That was another eye-opening moment for me and one that will stick with me throughout treatment and well past recovery.

So there you have it. I have an eating disorder.

But I’m not terrified like I have been for years. I feel anxious. Sometimes I feel powerless. Sometimes I feel like I can’t do it. Occasionally I still feel denial. But now I know how to recognize these feelings and thoughts as products of my eating disorder, not myself.

I have an eating disorder… and I’m going to kick its butt.

A meme with a photograph of a sunny path through the woods. Text reads, "I have an eating disorder. I began subconsciously using food to cope with sensory overload, to avoid meltdowns and shutdowns, and to find some sense of control in my life. As I start down my long path to recovery, I am reaching out to others to say "You are not alone."I have an eating disorder...and I'm going to kick its butt."

[Featured image, image description: A photograph of a sunny path in the woods with shadows from the trees stretching across it. Text reads “Starting Down My Path to Recovery. Seeking Sara.”]

Video: Meltdowns & Shutdowns

Did you know that I have a Seeking Sara YouTube channel?

I make videos rather infrequently but am happy only making a few a year since writing is the medium that works best for me! Please enjoy.

What do I experience in a meltdown? What is a shutdown? What are pillars and how does paying attention to them help lessen my meltdowns/shutdowns?

 

Also, in case you missed it, I was recently published on both Thinking Person’s Guide to Autism (here) and The Mighty! (here)

 

23: Sensory Series (2) “Picky Eater”

For as long as I can remember, I’ve been ashamed of what I do and don’t eat. The stigma of being a “picky eater” has followed me around my whole life, bringing comments (and no small amount of exasperation) from family, friends, wait staff, and strangers alike.

Recently I’ve been examining why I struggle with certain foods and have come to the same conclusion as I have with much of my post-diagnosis self-exploration:  I’m actually incredibly strong and my experiences are real and valid.

Why am I so “picky”? Well, if you could experience my senses for a few hours, I bet you’d be more understanding, less judgmental, and I’m fairly certain you’d stop using the word “picky” pretty fast. Often times, I want desperately to like a food, to be able to order anything at random, or to just eat whatever is put in front of me without hesitation. But for me, food is almost always a relentlessly overpowering experience.

It’s not just taste that’s overwhelming–it’s texture, smell, color, consistency… What if I told you certain foods literally hurt to eat? That some trigger vivid memories that are disorientating and distressing? That some foods make me nauseous and panicky? Throw in IBS, general stomach and digestive issues, multiple food allergies and sensitivities, and it’s actually pretty impressive that I eat at all.

TASTE

I really struggle to eat bitter, sour, or spicy foods. The problem is, what you consider overwhelming is likely not what I do. Remember, all of my sensory input is dialed up and extra-sensitive. I’m not just being picky; I’m not overreacting. I really am experiencing things more intensely than most people. What you might find pleasant with just a hint of a kick might feel like an absolute assault on my senses.

Another factor is that sometimes my sensory input seems to go haywire somehow and, for example, a bitter taste might register just like bile to me. No one else eating the same dish is having the problem, but I literally cannot eat another bite because it legitimately reminds me of throwing up.

TEXTURE

Texture is a huge factor as well. Texture no-go’s for me include: peaches, coleslaw, celery, Japanese konyaku, warm peanut butter, etc. I can’t really explain why some of these things are difficult for me, but the sensation can be so uncomfortable that my jaw locks up. This can be a full-body experience, causing pain, discomfort, chills, headaches, and tics if I’m required to eat something for whatever reason.

TOO MANY TASTES AT ONCE

Even if I like certain tastes, too many at once is also overwhelming. There are not many meals I order out that don’t include me saying, “I’d like the (meal), but without (list of ingredients). So basically just the (stuff I still want).” The things I take off make the difference between me being physically able to eat the dish and literally not being able to eat it without melting down or extreme distress.

IN CONCLUSION

I debated making a list of all the foods I struggle to eat, but decided against it. Maybe some day I will, but for now, I still struggle with embarrassment from a lifetime of stigma related to what’s difficult or painful for me to eat and I’ve decided to focus elsewhere.

I’m currently on a journey of self-acceptance and I’m finding it more productive to focus on my “Can Do” list than my “Can’t Do” list. I’ve come a long way in trying new foods, and I’m working on becoming more accepting that 1) I function differently and it’s okay not to eat foods that are difficult and 2) it’s actually impressive what I do eat and I should give myself more credit.


BONUS:

STIMMING THROUGH FOOD

While tracking what foods are difficult for me to eat, which I refuse to eat, and which I love to eat, I noticed that I draw on certain foods as a massive comfort; I actually stim by eating these foods, usually in a ritualistic manner. They include foods like applesauce, crackers, pretzels, oatmeal… notice a pattern? When I’m exhausted or overloaded, I can’t deal with any intense or unpleasant colors, smells, textures, or tastes. Eating these familiar, bland foods is a source of comfort and helps me calm down. Now that I have identified that I am stimming through food, I have consciously begun working on stimming in other more healthy ways (allowing myself to rock, hand flapping, touching soft things, listening to a song on loop, etc.) to try to avoid stimming through binge-eating. (See 25: I have an eating disorder. for more on that.)

Click here Sensory Series Part 1, 16: Sensory Series (1) Auditory.

 

[image description: A “Swiss Cheese” Plant, (monstera friedrichsthalii). The plant has huge green leaves that have holes slashed through them, hence the resemblance to Swiss cheese.]

22: Depression

If at any point this post triggers you in any way, please please do not feel obliged to continue to the end. Feel free to put it aside and come back later. Feel free to put it aside indefinitely. That’s ok! Don’t feel like you have to read it at all if it will not be in your best interest. [Trigger and content warning: this post deals with severe depression and suicidal ideation.] Crisis numbers are listed at the end of the post.

Take care of you. You are important. You matter. You are enough.

I’m beginning to feel safe and myself enough to tackle what I’ve been going through recently. I’ve had to take several steps back from writing to take care of myself, but now I think I need to write about it so I can move on.


I’m just now coming out from behind a wall of clouds. I’m not “out of the woods” quite yet, but I can now see the edge of the forest and know that I can make it there.

About a month ago, my doctor started me on a new medication. I was really excited to be taking it, as it can help with a lot of symptoms I experience from a chronic illness. The first week or so, everything was fine and I was feeling optimistic and ready for the exciting changes. The second week, I noticed I was having strange bouts of moodiness and mood swings. I noted the change in my psychotherapy session and my therapist immediately questioned my new medication as it can affect hormones. We decided to keep an eye on it and see where things went…

By week three, there was an abrupt and terrifying change in my mental state. I began to experience sudden bouts of extreme, deep depression and suicidal ideation (thoughts about death and/or suicide without intention or a plan). It was especially bizarre because I’d experienced clinical depressed before as a teenager; I went through a period of time when I was about 13 or 14 when I never thought I’d feel happy again. But I haven’t been truly, clinically depressed for 15 years and this depression was so, so vastly different.

I experienced what I described to the alarmed nurse over the phone as “these bouts that feel like clouds coming in front of the sun, then pulling away again.” Darkness and utter hopelessness, followed by moments of clearheaded certainty that something was very, very off in my brain. I’d be tackled with soul-crushing, agonizing, deep sadness and hopelessness followed by “normal” brain functioning where I would reel from the shock of being so devastatingly knocked off my feet. Needless to say, the nurse called me back immediately with instructions from my doctor to stop the medication and either go to the ER or call 9-1-1 if I was in any danger. Because I was in direct communication with my therapist, in a safe location, and knew the difference between suicidal ideation and intent, I was able to remain out of the hospital until I could visit my doctor’s office with an emergency walk-in appointment.

There were several things that set this experience apart from the clinical depression I experienced as a child:
  1. This has been a strange in-and-out depression that slams me to the ground at the most unexpected times. As a teen, I experienced a numbing, near-constant depression. As I mentioned before, this has been vastly different. The episodes have been tapering off in frequency and intensity in this last week, but will probably continue for at least another week or so until the medicine is completely out of my system.
  2. The fear that this isn’t medicine-based at all, but me spontaneously going from pretty darn mentally healthy to devastatingly unhealthy in the space of a few weeks. Despite my therapist, the nurse on the phone, my doctor, the physician’s assistant I saw for the emergency follow-up appointment, and my husband all telling me it’s the medicine, it’s been an exercise in extreme trust in both myself and others that this is not me, but the medicine.
  3. The fact that I have little to no control over it. Of course, as a teen I couldn’t “control” my depression either. But with this medicine-induced depression, my therapist noted that it’s not situation-induced or even chemical imbalance-induced. I have to sit this out and wait; my normal coping mechanisms and strategies don’t work and don’t “speed it up” because it’s the medicine in my system causing it, not my brain. My therapist has encouraged me to allow myself to feel: “Stop trying to go around, under, or over it. You’re going to have to go through it.”

It’s been one hell of a ride so far. I’m fortunate to have an excellent therapist and empathetic doctor and an even more incredible husband to help me through a really disturbing few weeks of my life. My friends have been there for me, my Twitter followers and friends have showered positive gifs and silly pictures on me, my parents have video-chatted with me. With their support, it comes down to me being patient and riding this out.

This experience forced me to confront some really scary things from my childhood depression, but ultimately, I’m choosing to see this as a productive (not necessarily “positive”) experience. “HOW?” you ask?

Through this, I was forced to face the fact that one of my greatest fears in life is being depressed again. Of being in a place where I thought about suicide and couldn’t remember ever being happy. Through facing this fear (albeit against my will) I’ve realized that even if I face depression again, it will never be the same as it was as a teen. I am not a child anymore.

I’ve always said that anyone who truly wants to return to childhood isn’t remembering it accurately. I’m not saying I had a bad childhood. But children lack autonomy and control; they lack understanding of many things outside of their control. Their brains are not fully developed. They can’t always communicate what they are feeling and that they need help. They don’t know just how many options for help and treatment are out there.

Additionally, the nature of this coming-and-going depression has forced me to look a phenomenon straight in the face and stare at it unwaveringly. It’s a strange thing when you’re truly depressed: sometimes you literally can’t remember the feeling of happiness. Despite logically knowing it can’t be true, you can’t remember ever being happy. It’s your brain chemistry tricking you. The same is true when you’re not depressed: you truly can’t fully remember what it’s like to be in that bizarre mindset where everything is hopeless and nothing positive. Your brain doesn’t always reflect reality.

That’s part of why I’m writing this post. To remember.

I want to remember because I want to recall that–when I feel like this–it’s my brain that’s changing, not reality. In reality, there are so many people out there to help: therapists, psychologists, psychiatrists, doctors, nurses, specialists, spouses, partners, friends, family, colleagues, internet friends, strangers… There are always options: seeking help, calling a hotline, going to see a doctor, going on medication, in my case: going off a medication, trying a different medicine, seeing a therapist, crowdfunding money to afford to seek services, going to the ER, being hospitalized, talking to friends, reaching out to a loved on, dropping some responsibilities, taking care of only what you have to, focusing on the basics, seeing a psychiatrist, moving back in with family… the list goes on and on. There are limitless possibilities, but my brain can’t see them when I’m blinded by fear.

But now, if I ever experience depression again–be it situational, longterm, clinical, medicine or hormone-induced, or otherwise triggered–I can look back at this post and have hope that those clouds will clear and I will be okay.


USA

Lists of international suicide hotlines:

If you have trouble reaching out, cannot find a number, or have an unsatisfactory call experience, please do not give up. There is help; there are options. Try a different number, go to the closest emergency room, or call 9-1-1 (or your country’s emergency number).

 

[image description: A dark, cloudy day in Japan. The photo overlooks a small city with many buildings. Off in the distance, rolling mountain ranges cover the horizon. Bright rays of sun are shining through the dark clouds.]

 

 

 

19: Poison People

There’s a type of person I categorize as a “Poison Person.” They may affect me mentally, emotionally, physically, socially, sensorially, or any combination of these. They will sap my coping and social skills until I am reduced to an anxious, exhausted blob. They may actually be wonderful people; they may even be people I desperately want to like. But they are like poison to me.

A Poison Person:

  • demands eye contact
    • implies dishonesty if little or no eye contact
  • invades personal space, gets in my face
    • may try to force hugs or kiss on the cheek
    • consistently moves closer when I move away
  • wears heavy perfume or scents, is a heavy smoker
  • is impatient
    • demands immediate responses and actions
  • talks loudly or yells
  • jumps topics frequently and rapidly
  • speaks extremely quickly. Is a “hyper-speed” talker all the time
  • jumps in to fill the silence when I’m trying to process something
    • supplies what they think I might want to say or what I might be feeling
    • derails my thought process, sometimes causing me to have to start all over again
  • mocks or makes fun of me/others
    • gossips constantly, makes me wonder what they say about me
  • treats others as inferior
    • is patronizing, condescending, infantilizing, or dismissive
  • lies frequently
    • cannot be trusted; breaks confidence
  • is un-empathetic or uncaring
  • has dry, abrasive humor and finds it funny when I can’t read it

A poison person may have more than one of these traits. Rarely, I meet someone who has ALL of these traits…and I run for cover.

In theory, I avoid a Poison Person at all costs, but unfortunately many PP’s can be fairly practiced at hiding these traits. Other times,  it’s someone who is not easily avoided (example: Boss).

The effect that a Poison Person can have on me is best illustrated through a story:

I went on a shopping trip with two fellow expats while studying in Japan. One was a fairly familiar friend, the other a casual acquaintance. Normally I would avoid going anywhere with people I didn’t know well, but I was desperate to get to this particular store and had no way of getting there otherwise.

The car ride to the store was only twenty minutes, but it felt like an eternity in hell. We took the acquaintance’s car and she had air “fresheners” all over. Those things are like little migraine bombs for me. I could have handled that much, if she hadn’t been a Poison Person in disguise. As she drove, words just kept rocketing out of her mouth like verbal diarrhea.

There was no pause in the stream of words for the entirety of the car ride and I was right next to her in the passenger seat. My friend in the backseat did little to engage in conversation, and I became the sole target for the onslaught. She often spoke more quickly than I could hear (much less process), all but shouted her words, adopted high-pitched voices to imitate people, kept locking eyes with me in the rearview mirror, often grew impatient (and louder) if I didn’t fill the infinitesimally brief silences with an adequate response within her self-allotted timeframe….

Unfortunately, it didn’t stop when we reached the store; she kept it up throughout the entire hour-long shopping trip as well. I had difficulty thinking through what I needed to get while in the store–even with a list in hand. I became anxious and wanted to either sink to the floor and cry, or run out the door and into the night. At one point I excused myself to go find some random item I didn’t even want so that I could have two minutes of calm in which to breathe deeply.

By the time we got back to the car, I was at the end of my rope. During the twenty minutes of overpowering one-sided conversation returning home, I had to focus on breathing and not throwing up. I was nauseous and had a pounding headache. My thoughts were scattered and I struggled to say anything at all. I answered her in one-syllable words, hoping she might get the hint. I didn’t feel comfortable asking her to speak more softly (or not at all) because it was her car, her driving, and her kindness that got me to the store at all and I didn’t want to be rude or ungrateful.

Once I got home, I was completely nonverbal. I couldn’t force myself to speak. Instead, I sat on the couch and rocked. By the time I had calmed down, it was time for bed and I collapsed into bed in absolute exhaustion. My final thought that night was, “God, it must be exhausting to be her….”

[image description: “Ghost Plants”, succulents of a pale green color. They took very pointy, yet beautiful. They are very geometrical in appearance.]

18: Empathy (Part 2)

Hyper-Empathy and My Media Choices

I began writing about my experiences as a hyper-empathetic Autistic person in 17: Empathy (Part 1) and quickly realized that I had too much to talk about in just one post.  Today will continue my look at empathy–this time through the lens of my media consumption.

As I mentioned briefly in Part 1, I struggled a lot when watching TV or movies as a child until I realized that I was having extreme issues over-empathizing with characters or people on screen. If I’m being honest with myself I sometimes still struggle hugely with this, but I’ve learned to be much more selective with what I watch.

One clear example of this is the show “America’s Funniest Home Videos.” I know many of my readers aren’t from the US, so I’ll explain. On this show, viewers watch home videos sent in by other viewers and (hypothetically) laugh until they cry. My family used to watch the show pretty regularly. Some of the videos are adorable, others are sweet, and some are funny. But I realized after a while that I was really tense while watching and noticed I was most upset when certain kinds of videos came on. There are a good number of videos sent in of people slipping, falling, crashing, or otherwise hurting themselves on camera. I hate those!

I understand logically that probably no one was actually seriously hurt in these videos. I realize that people probably wouldn’t have sent them in if they had! I get that the person in question may even have found it funny themselves. But it doesn’t really matter. For me, there’s truly never been anything funny about a person in that kind of situation—even if they’re perfectly fine. The “funny” videos where someone dropped a birthday cake or scared their child while wearing a mask aren’t any better for me. I empathize too much and feel sad and guilty about the dropped cake or upset and betrayed by the parent who frightened the kid.

There are certain storylines in other shows and movies that I usually don’t enjoy watching either. One great example is the infuriating “barter” episode. The one where a character runs around for the entire episode trying desperately to reach some goal only to fall continually just short of it. Where a character has a priceless object —let’s say, a vase— that they want to trade for a famous baseball card while at a flea market. Unfortunately the baseball card collector has her fair share of vases at home and refuses…but mentions she would just love that shiny red action figure at the table next door. The main character rushes to the action figure collector who tells them they aren’t interested but really wants the antique music box sold by their competitor… The story goes on until our hero has traded their vase for a candelabra for a chess set for a Pac-man lunch box for a whole host of things… all until they get that shiny red action figure and go to the baseball card vendor, only to find that she just sold it. You know–the really, really frustrating and infuriating episode trope. That’s another example of something that’s meant to be entertaining but makes me incredibly anxious and upset.

I could go on and on with media:  books, news, video games, movies, TV, music, etc. I have to be very careful about what media I consume for many reasons, but empathy is one major one. Watching the news has almost always caused me extreme anxiety or even panic attacks. Certain songs can send me quickly into a spiral of sadness and anxiety. Books can pull me into their pages and make me over-relate with characters who exist only in the ink on a page. Horror and gore are things I cannot stand, even a little. Disconnecting from or not engaging with certain types of media has been essential to my survival as a hyper-empathetic person.

Over time I’ve gotten better at both selecting media and at recognizing when I’m over-empathizing. These are some things that help:

  • I don’t usually watch reality TV (well, that’s not just due to empathy…).
  • I avoid depressing or distressing movies or shows.
  • I mostly avoid going to the cinema (big screen=big impact, plus no pausing).
  • I’m very selective when keeping up with the news.
  • I remind myself during difficult scenes that actors aren’t really in the situations they act in.
  • I mute dramatic music when I notice it affecting me in a scene.
  • I do something else while I watch to ground myself in reality and disconnect more from onscreen emotions.

I’ve found that a healthy mix of avoidance and coping mechanisms means I can enjoy more media. I still tend to watch mostly children’s shows, cartoons and anime, and fantasy/scifi movies and TV though. The rest just don’t usually interest me and these genres pose less of a potential threat to my mental and emotional health.


So there you have it! This is another post that makes me feel vulnerable and I’m still processing why that is. Maybe because I’m tackling a stereotype that is still so widely believed. Maybe because I’m afraid people will see my sensitivity and empathy as weird or signs of weakness. Maybe because I’m afraid people will discredit and invalidate my experiences. I’m not really sure yet, but I also think it’s important for me to be honest and share true insight into the way I experience the world.

The next time I post about empathy, I want to focus more on the positive aspects of being hyper-empathetic!

Click here to read 20: Empathy (Part 3) The Good!

 

[image description: A pink and green succulent with ragged thorns around the edges. The center is textured with white flowers that sit partially in a pool of water.]