27: Eating Disorder Treatment

I’ve now been in treatment for about a month. My first steps out the gate might be best described more as stumbles and falls, but every scrape I earn on the way down is a badge of honor that I hang proudly in my mental trophy room.

Why? Because each time I slip and fall, I learn something new and often profound about myself. And each time I get back up, I reenforce the fact that I can do this.

I have an eating disorder. And I’m gonna kick its butt!


[Content Warning: eating disorders, weight, food, restriction, bingeing, treatment]

It’s taken a lot (and I mean A LOT) of work to take my first steps in treatment. As I wrote in my first post about my eating disorder, I spent over a year in therapy after diagnosis of disordered eating before I finally felt ready to start treatment.

“I feel like I’m starting out across a tightrope, and I look down and there’s no net that I can see,”  I stated bluntly to my therapist.

“Sometimes I’m scared and I want to crouch down, grab the rope, and head back to safety. But everyone around me—friends in treatment and recovery, family, my husband, books I’m reading, my therapist—is assuring me that I am safe and there actually is a safety net below me. I just can’t see it yet. I just have to trust and keep going.”

A meme with a close-up of a pair of feet and legs of a person balanced on a tightrope. Text reads, "Eating disorder treatment feels like I'm starting out across a tightrope and there's no net that I can see. Sometimes I'm scared and want to head back to safety. Everyone is assuring me that I am safe and there actually is a net below me—I just can't see it yet. I just have to trust and keep going." The words keep going are bigger font.

And here’s the thing: no matter how many rational people you have in your court; no matter how logically you look at your eating at times, an eating disorder will try to whisper (sometimes shout) in your ear that those around you are wrong—that you are wrong. Learning to identify that voice takes a lot of work. It takes even more energy and trust to at least ignore that voice, if not fully defy it.

Some days I can laugh in its face and retort, “You are losing and you know it. That’s why you’re so loud. Shout away!” Other days I cower and bow to the voice, agreeing with it for a moment if only to gain some temporary peace.

And it’s strange… treatment is hard. It can be scary. It’s utterly exhausting. Yet so far, treatment has been far, far less scary than my enormous dread of seeking help was.

I spent so long dreading and fighting the thought of treatment, but a huge part of me feels relief at tackling something that I’ve struggled with for eighteen years. While it’s scary to admit I have an eating disorder, it’s also incredibly liberating. As I do the hard work of therapy, it’s often exhausting and sometimes overwhelming, but it also comes with an all-consuming relief that I can’t quite describe.

Initial Steps of My Treatment

1) Six Meals

I started a six meal a day routine, eating three small meals labeled merely as Meal 1, Meal 2, and Meal 3, and three small snacks a day. This is fairly common in treatment. One of the benefits can be reawakening hunger cues that a body has stopped sending for people who have restricted.

I went into the routine thinking it would be very easy, but also feeling like that was a lot of food to eat. (Interesting how an eating disorder will whisper conflicting information in your ear. Once you start to catch on to its little inconsistencies, it starts to lose its grip on you ever so slightly.)

Through this task, I realized that anorexia has played much more of a role in my life than I had realized, and that my bingeing was often a symptom of both conscious and subconscious restricting.

This was a huge revelation for me because: A) I had always thought of it in reverse, that my bingeing lead to restricting out of shame and B) I had the false assumption that someone has to be underweight to be anorexic. (That is NOT the case at all. Anyone of any size or shape can be diagnosed with anorexia.)

I printed out a chart when I realized how difficult it was to remember to eat and how hard it was to hold myself accountable for it. I worked out the math: I needed to eat something every 2-3 hours or so. The only problem? Seeing what I was eating on paper made me fixate too much on WHAT I was eating. But my fear—that I needed to change everything about my eating habits all at once—was unfounded.

My therapist reassured me that we were breaking things into manageable steps. “Right now, just focus on when you eat, not what. Addressing nutrition comes later!” I was so relieved because she was right—focusing on what I was eating in addition to starting this new routine that challenged 18 years of restricting and bingeing was too much. It was setting me up to crash and burn.

2) Talking to my doctor

Another victory came at a follow-up appointment with my primary care physician. This was not strictly part of my therapy, but I made it part of it because I trust my doctor.

Toward the end of my appointment, I had worked up my courage. “There is one more thing. Something I think you should be aware of as my GP.” I took a huge breath and continued.

“I’m in treatment for an eating disorder and I’ve begun a six small meals a day plan in order to return my hunger cues and manage my restricting and bingeing. So far it’s helped a lot to identify that I wasn’t eating as much as I thought I was which was leading to binge eating. So far it’s helped a lot with dizziness and hypoglycemia.”

I paused and finally looked at him.

“That’s great! Most people should be eating 4 to 5 small meals a day rather than the 3 we do. And if you ever want to try medication, there are some that can help with binge eating.”

I could almost hear my eating disorder groan at this response (it had hoped he would shoot me down and I’d have an excuse to stop treatment), but ultimately I was relieved.

“Thank you! I think treatment is going well so far, so I’ll wait on medication, but it’s good to know there are options. Also…” I paused again, looking down at the notes I had written for the appointment, “I… would like to stop being weighed. It’s very triggering for me; It makes me struggle with restricting more. And it’s hard to avoid seeing it on my charts.”

I held my breath the beat it took him to answer.

“Absolutely. No need to take your weight.”

Phew! Another ally in my court.

3) Challenging the voice of my eating disorder

I have made quite a lot of headway in this regard, but am finding it the most difficult part of treatment. For so long, there’s been this negative narrative in my head regarding food, weight, perfectionism, and control. Identifying that voice was an overwhelming experience as I wrote down all the terrible things that voice says to me.

The next step after learning to separate the eating disorder “voice” from my own has been a little harder. I’m now starting to “reply” to it with snark like “Gee, what a terrible suggestion. Thanks, but no thanks!”

And as a close friend of mine pointed out:  the more progress I make, the more my eating disorder is going to fight to survive. It knows it’s losing, and it will do anything to survive.

But joke’s on it—I’m stronger. And certainly sassier!

4) Journalling and continuing to read

I write notes in my journal about what my goals from therapy are and reminders of things to do and not do. That’s been essential to keeping on track and reminding myself it’s okay when I slip up. I also reflect on things I’ve learned in the books I am reading as part of treatment.

Journalling has also helped me to connect some dots on how my eating disorder controls a vast variety of things in my life. I’ve been astounded, for example, to realize how much my eating is tied to my perfectionism and anxiety, and in some ways, my OCD tendencies.

For example, my need to follow difficult tasks through until the bitter end no matter if I want to or not is slowly, ever so slowly budging. I recently had a small but mighty victory of “cheating” while reading one of my books and skipping over a section that was triggering to me. In the past, I would have slogged through that section to be “self-disciplined” (strange as that sounds) even when my mind and body were signaling “This is not what we need right now!”

Journalling also helped me to realize that binge-eating had been a way to stress-stim for me, and that without it I was much more anxious. It showed me that I needed to start stimming as self-care: coloring, squishing clay and silly putty, singing, flapping my hands, holding fluffy stuffed animals, etc.

I see these victories as tied to my treatment in a very real way, and I wouldn’t have noticed them without journalling. The journal also gives me a place to record moments I’d like to share in therapy, and a place to look back on to see how far I’ve already come.

I’ve got a long road ahead, but for now, I am so happy to look back and see how far I’ve already come.

A meme of a forest path with a blue square of text over it. 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 description: A close-up of a pair of feet and legs of a person balanced on a tightrope. Text reads, “Eating Disorder Treatment: My First Steps. Seeking Sara.”]

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.”]

24: Ritalin, My Life-raft

What started as a series of sleep and nap studies ended in me getting parts of my life back, some of which I hadn’t realized were missing.

In a similar fashion to my ASD diagnosis—where I described the road to diagnosis as “a journey of good luck, strange happenstance, and unexpectedly compassionate therapists“—serendipity, happenstance, and listening to my gut also led to my being diagnosed with ADD (Attention Deficit Disorder).

Confused? I don’t blame you. Here’s what happened:
(Feel free to skip this next section if you just want to read about my Ritalin experience.)


HOW A SLEEP DISORDER DIAGNOSIS LED TO AN ADD DIAGNOSIS

“Sleep disorder, unspecified. Hypersomnia.” I looked down at the sleep study report the doctor had just handed to me. Underneath a big block of medical lingo were those two lines that I squinted at with confusion.

“Hypersomnia?” I asked. “So… like the opposite of ‘insomnia’? You’d said I probably had narcolepsy. Why is the sleep disorder unspecified?”

“Yes, exactly,” she replied. “Based on your nap study, we can see that you clearly have extreme excessive daytime sleepiness and difficulty remaining awake. We suspected narcolepsy, but you didn’t enter REM sleep in your nap trials, despite falling asleep very rapidly in all of them. But regardless, the treatment will be the same as it would for narcolepsy. I’m going to prescribe you a drug called ‘Provigil.’ It’s commonly prescribed for shift workers and narcoleptics. I had a narcoleptic woman start taking it recently and she said it changed her life!”

As I held the first dose, I was anxious, but excited. This medicine had the potential to “fix” me—at least for a while at a time.

I finally worked up the courage to take it, then got busy while waiting the 30-60 minutes it would take to work. In about 30 minutes, I felt an extreme lethargy slowly washing over me. I became even more drowsy than usual, and began to enter a numb shutdown mode.

I felt like I had dived into a deep pool; everything was muffled and cold around me, but I slowly surfaced back up to alertness as the medicine wore off.

The next day, I was determined to try again. “A fluke,” I thought. “I was just too nervous when I took it.” But the same thing happened. It made me feel so strange, having the complete opposite reaction to something.

One text to a family friend (who’s a pharmacist) later, and I had my answer. “Paradoxical reaction/effect” was a real thing! I wasn’t imagining it. It was a rare side effect (2% kind of rare), but it was real and it had happened to others. My doctors told me to stop taking the medicine immediately.

The reaction led me to researching paradoxical reactions, reading about stimulants, and searching on forums for others with similar reactions. I found that some people with ADHD/ADD had had similar reactions. Many of the experiences they described sounded like lines written from my own life. I started to wonder if ADD could be one of the final pieces to understanding my brain. (Note: Anyone can experience a paradoxical effect, not just people with ADD/ADHD.)

My sleep doctor suggested we try Ritalin next. This made me pause. “Should I be talking to my therapist before I start Ritalin?” I wasn’t sure if I should be evaluated by a psychiatrist before starting it, just in case I did have ADHD/ADD.

I decided I should after talking with a fellow Autistic friend diagnosed with ADHD. We talked until 4 AM because things were just finally clicking into place. There were so many “Ah hah!” moments and I began to feel just like I did when I realized I might be Autistic: denial, excitement, dread, grief, anxiety, and finally—utter relief.

So, I brought it up to all 3 of my team: therapist, GP, and sleep doctor. My therapist assessed me and confirmed that I have ADD. My GP agreed to help with dosing for ADD, using the old “killing two birds with one stone” metaphor. My sleep doctor was all for it.

Holding that first dose felt like I was standing on a towering springboard at the edge of the pool. Would I sink to the bottom again? I worked up my courage and took the first dose… and started my new normal.

RITALIN, MY LIFE-RAFT

It turns out that Ritalin works for me. Like, really, really works. Not only does it banish at least 75% of my chronic fatigue while it’s active, it makes me alert and awake, and allows me to function an entire day without crippling sleepiness and an absolute need to nap. I had forgotten what it felt like to be fully awake. For the last decade, it was rare that I could make it through a single day without napping. Now I can do it with relative ease. I’m finding that the day has so many more hours than I remember it having!!

But what happens to my mind is equally as life-changing.

My whole life, I’ve been treading water. I’ve been fighting so many currents, trying to stay afloat. I’ve been fighting to stay afloat, feebly trying to snatch at tasks and getting bowled over by the tide.

A picture of teal waves with lots of foam. Text reads, "Ritalin is my life raft. It keeps me afloat so that I don't struggle to function at a very basic level. When I'm on it, I'm not flailing around aimlessly in the water. I move in a single current with direction and ease."

Ritalin is my life preserver, my life raft. It keeps me afloat so that I don’t have to struggle to function at a very basic level. When I’m on it, I’m not flailing around aimlessly in the water. I move in a single current with direction and ease.

Jumbled thoughts and impulses used to crowd in all around my mind, each demanding to be attended to all at once. My mind would flit from task to task, leaving half-finished projects in my wake. I struggled to begin, switch, and end tasks. Sometimes, I would get so hyper-focused on a single task that hours would pass me by. I labelled myself undisciplined, lacking self control, distracted, impulsive, and lazy.

Since starting Ritalin, I’ve felt my confidence soar, my anxiety levels plummet, and my outlook on life brighten. I’ve been able to look at myself through an even more accurate lens than with just my ASD diagnosis. I’m not lazy; I’ve been working hard just to function. I’m not undisciplined; my mind is moving too fast to focus on one thing for very long. I’m not unusually lacking in self control; I have ADD.

Now begins my quest to adapt to my new normal. For so long now, my life has been built around my excessive sleepiness and exhaustion. It’s been built around my need to hide my frantic, scatter-brained, hyperactive, 90 mph anxiety-inducing mind and my hyper-focused binges. But now that I have the life raft that is Ritalin to help keep me afloat, I can start focusing on things I haven’t dreamt of in a decade.

(…Yes, pun intended.)

 

[image description: A photograph of teal waves with lots of white foam swirled through them.]

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.]

 

 

 

15: Diagnosis & Coming Out

If you haven’t already, please read my blog post “13: Women and Girls” to better understand this post!

Welp, here it is!

Today is the day that I share my news with friends and family via Facebook. I was originally going to share my blog with everyone on Friday, but I’m too anxious to wait another day. *tries not to vomit*

One major reason I started this blog was to have a vehicle to come out to people about being diagnosed as Autistic. Masking my Autism has become so incredibly tiring and I’m really burnt out. I also feel like I’m hiding such a huge part of myself from the people I care about! (See: 6: Why I’m Writing This Blog for more on that.) I’ve been feeling pretty lonely and isolated lately and I want that to end.

So here we are. The story of how I got diagnosed.


Evaluation in Japan


I started my journey by accident in 2015.

I was working in Japan and seeing a Japanese psychologist (who’s fluent in English) for help with the grieving process after losing several people close to me. I’ll call my therapist “S” here for the sake of privacy.

Throughout the years I had sometimes wondered if I might be on the Spectrum, but would pretty quickly decide that it must be impossible–I didn’t fulfill this criteria or exhibit that trait, etc. But I eventually stumbled upon some resources about how women on the Spectrum often present very differently than men. (See 13: Women and Girls for more info on that.)

After delving into research about Autistic women, I tentatively started to let myself consider that I might really be on the Spectrum. I began to take some notes about my life and the way I experience the world as I continued to research about Autistic women. (The baby drafts of this blog!!)

I figured that someday–if I decided to be formally assessed back in the US–I would have all that stuff written down already. 

But I didn’t bring it up to my therapist. I was too afraid that she wouldn’t know about women presenting differently and about masking. I was terrified she would immediately shoot me down without assessing me. (It’s not that I was set on being diagnosed as Autistic. I was set on being assessed accurately and thoroughly–whatever the result.)

So I continued to quietly gather information and write down my self-reflections without telling anyone. It was an isolating, but adrenaline-filled time.

It wasn’t until 2016 when I had been seeing S for a full year that things changed. My family had come to visit me in Japan and I showed them around several cities throughout the country, acting as both guide and interpreter. When we were in Tokyo, I experienced an intense bout of sensory overload that led to a subsequent meltdown. (You can read about it in 5: Sensory Overload & Control.)

When I returned from the trip and S asked how it had been, I finally told her. I told her about the sensory issues I’d been having more and more difficulty with, the meltdown in Tokyo, the social fatigue, the wondering, the doubting, the researching–everything. Our session ran over time as she patiently listened to everything spill out. Then I waited as she thought and chose her words carefully.

To my surprise, S had been wondering if I was on the Spectrum as well.

I was really taken aback. I sort of sat there in shock for a moment before a huge smile crept over my face. “Really??” I exclaimed, euphoria rushing over me. I was just so relieved that she was taking me seriously.

I printed out the notes I had been writing on my life and handed them over to her during our next session with an anxious excitement. When she returned the pages the following meeting, we talked them over in more detail and she agreed again that she suspected I was on the Spectrum. She asked me to continue writing and agreed that it would be useful if I chose to seek formal diagnosis someday back in the US.

Over the course of the next year, I wrote feverishly. I couldn’t stop. I literally couldn’t stop scribbling insights and realizations onto whatever surface was available. So many things started to make sense about my life and I felt such a sense of relief come over me.

But I still wondered. I went back and forth between good days when I felt more “normal” and questioned myself, and bad days when the truth was presented and reaffirmed right before my eyes through a meltdown or extreme social misstep. I bounced back and forth between denial and acceptance.

Finally, as my time in Japan came to an end, S presented me with a referral letter. At this point, she had seen me in regular sessions for two years, read up on recent research about Autistic women published in psychology journals, and read all of my writing.

On July 10, 2017, she handed me a letter which contained the lines:

“While I have seen Sara, she has shown similar characteristics to Asperger Syndrome and Autism, such as sensitivities to various stimuli, panic attack due to sensory overload, fatigue after social interaction, and need to follow schedule rigidly.”

She went on to write that she believed me to be on the Spectrum and was referring me for formal assessment and diagnosis.

That letter was such a gift. I knew that with it, I wouldn’t have to start over completely when seeking diagnosis. I knew I’d have someone in my court (so to speak) and wouldn’t feel like I was going into an assessment completely un-supported.



Assessment and Diagnosis in the US


I began seeing my psychotherapist, M, soon after I returned to the US to get some help adjusting to life back in the US and to address a possible eating disorder. (I will address my eating disorder in a future post.)

After a few sessions, I felt comfortable enough with M to bring up Autism and I gave her the letter from S. She said that she would evaluate me over time as she got to know me, so we continued our sessions and left Autism on the back burner.

By late November of 2017, I wasn’t writing my book anymore. Not for months. I felt like I had stagnated in my self-exploration and realization. After digging deeper, I realized that I was once again doubting if I was actually on the Spectrum.

I brought it up to M and we explored why I was feeling this way. During that session, we realized that–after the initial deluge of self-realization and discovery–I had adapted and started doing things in ways that minimized meltdowns and sensory overload. I wasn’t “less Autistic,” just coping with things better and going through a time when my traits weren’t as noticeable–even to myself.

Next session, she brought in the DM-5 (The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition) and we sat down and went over the diagnosis criteria.

By the end of the session, I had my final, irrefutable proof.  I am Autistic.



I was expecting my road to diagnosis to be an excessively difficult, expensive, humiliating, and stressful process. I know that for many woman, it can be.

I’ve been very lucky. This has instead been a journey of good luck, strange happenstance, and unexpectedly compassionate therapists. 

After diagnosis, I’ve been hit with so many unexpected emotions:  fear, sadness, excitement, regret, doubt, rage, determination, grief, elation… It’s been an ongoing, never-ending process as I come to terms with who I am.

I feel a sense of grief and loss that I wasn’t diagnosed sooner, but also an odd and bizarre relief that I wasn’t. I feel excited that I finally understand myself. I feel fear for the future and uncertainty as I wonder what the future holds. I feel an internal struggle as I decide what my new boundaries and limits are, and how many of those are worth pushing and how often.

Recently, my overwhelming feelings are isolation and insincerity. More than any of the other emotions, these are ones I can’t bear anymore.

As I share this blog, I feel utterly vulnerable and more than a little terrified. But I also feel excited. I feel free. There’s a freedom that comes with realizing that I can’t control how people react to my coming out. I can’t control it, so why worry about it?

No matter the reactions of those I care about, this is a truth that needs to be shared. It’s time for me to come forward and say, “I am Sara. I am Autistic. I am me.”

 

[image description: An image of a delicate bright pink rose that’s covered in raindrops.]

14: Fibromyalgia & Chronic Fatigue

Fibromyalgia and the associated chronic fatigue are also things I am passionate about talking and writing about more publicly. They are invisible disabilities that I deal with every day. Fibromyalgia puts significant strain on my pillars and I have to be very careful to take care of myself and manage my pain so that I can function.

Last year I participated in an event called “Keep Talking: a Storytelling Event” where I shared the story of my diagnosis. It was a really nerve-wracking experience to get up on stage in front of a crowd and be so vulnerable. But it was so rewarding and cathartic too!

In future, I’d love to talk about my Autistic journey on stage!

Below is the YouTube video (audio only) of my performance.

Note: I typed out closed captions to make the video more accessible. Please click on the CC button to turn them on. I’m also including the written trascript below for those who prefer reading it or use text-to-speech programs.

I am in pain. Every second of every day. I am in pain. Sometimes it’s a dull ache at the back of my mind. Other times it’s a throbbing, stabbing agony that keeps me bedridden. And I’m always exhausted. Next year will be the 10th anniversary of my official diagnosis, and I have literally forgotten what being energetic feels like.

It started in seventh grade. Sometimes I’d experience a random shooting pain in my leg. Had I somehow twisted an ankle during recess? But the pain would come and go, so I ignored it. Just growing pains. Nothing to see here. Nothing to worry about….

Going into the 8th grade, I started feeling generally unwell. I’d have an intense stomachache, a pain here or there, a crippling headache.… I started going to the school nurse more often than she deemed “normal.” I’ll never forget when she finally turned to me, sighed in frustration, and asked, “Have you been diagnosed with anything mentally wrong with you?” I’ll never forget, because that’s when I started to wonder myself. “I must be a hypochondriac. I’m just looking for attention. I’m just making it up. It’s in my head.” I started to ignore it. To stop mentioning it. To pretend it just wasn’t there.

I joined color guard in high school and I absolutely loved it! But toward the end of my second season I was having wrist and shoulder pain too severe to continue. I joined the choir, but struggled to stand through performances. I began to feel exhausted. I went to the choir director’s office to rest during free periods. Pretty soon I started seeing a chiropractor for back pain. It felt like I was hanging on by a thread. But I got through it and I graduated!

The first semester of college, I got the flu. A bad flu—one that sent me to the ER. And I just never really got better. Imagine your worst flu. Now imagine it doesn’t end. It doesn’t go away. No Tamiflu. No bouncing back. My body ached. Those pains I’d been feeling for years intensified. They’d now shoot up and down my body like fire and lightning mixed into pure hell. I felt nauseous all the time. I was beyond exhausted. This was a new realm of agony.

I began missing classes when the pain in my legs and back was so bad I was unable to stand. I started getting “medical escort” rides to class from campus security. I’d sit in the back of their patrol cars, literally locked in—with a metal grate between me and the driver—and they would drive me to my classes, glancing at me in the rearview mirror. I’d feel embarrassed because I was this outwardly healthy-looking college brat they were ferrying to class. I’d hobble into the building where I’d often be late to class because the football team would inevitably be using the elevators… In class, I’d sometimes have to lie on the floor to take notes because my back was spasming so hard.

During school breaks, I’d see doctors. My college spring break experience? Doctor visits. Over the years, I’ve had dozens of blood tests, biopsies, MRIs, cat-scans, EKGs, EEGs, spinal taps…. I saw an endocrinologist, neurologist, psychologist, gastroenterologist, then finally:  a rheumatologist.

I was 18, still a freshman in college, when I got an answer. The test was almost infuriatingly simple. A few touches here and there. Testing tender, inflamed points throughout my body…. Fibromyalgia.

I was so happy. I remember chattering to my father all the way home about how happy I was. If you haven’t waited years for a diagnosis, haven’t wondered if you’re crazy or weak or just “sensitive,” maybe you won’t understand. But I was just so relieved. Those of you doing the math will know:  I waited 6 years for that moment. And half of the time, I wondered if it really was all in my head.

But that relief soon became a devastating grief. A quick online search showed me- it’s not so simple as just getting a diagnosis. “Incurable. Treatment can help, but this condition can’t be cured.” So…no magic wand. No fixing me.

And this is the reality for an estimated 10 million Americans with Fibromyalgia. Unfortunately, my story is not uncommon. Those with invisible disabilities often go through years of misdiagnosis or being written off. Many are told “It’s all in your head”—often by medical professionals. I stand here, on this stage, in front of you all. And I look healthy. I look fine. But I’m not. And I probably never will be.

But… I haven’t stopped trying. I can’t. I refuse to stop living my life, even if it’s sometimes very, very hard to continue. In my junior year of college, I reached my lifelong goal of studying abroad. Twice. I graduated with honors with a self-designed major. Learned Japanese. Worked at the Smithsonian Museum. Lived and worked in Japan for three years. Joined a Japanese choir and competed in a national competition. Got married to my best friend.

Fibromyalgia is not fun to live with. But it has taught me some things. I learned who my real friends are—the ones who will stick by me even when I cancel plans for the 3rd and 4th time. I learned to trust myself and my instincts, to be my own advocate. I learned that I will push a broken body to its limits rather than give up. I learned that I can get through what feel like insurmountable challenges. And I learned to never, ever assume that someone who looks “fine” isn’t dealing with something enormous.

I will never say that I’m grateful for fibromyalgia. But I am grateful for what I’ve learned about myself. I am strong. I am a superhero. And I’m not giving up.

[image description: A bird’s eye view of some daisy-like flowers. The ends of their petals are deep purple, but the inner parts of the petals are bright white.]