What Happens When You Never Get ‘Well’?

Army Doctor/flickr
Unreasonable expectations surrounding the getting-better process can cause anxiety and, ironically, exacerbate health issues.

Recently, I went to a sleep specialist to treat my chronic insomnia. As I checked in for my appointment, I was gripped by a thought: “This is it. After we get a handle on this last thing, I’m supposed to be a fully functioning adult” — not will be, mind you, but supposed to be.

In that moment of recognition, more than a decade of self-blame for my inability to foster stability in my life came crashing down in waves.

The ACA has been, for many, a life-saver, and this is very much the case for me. After waiting out my teens, twenties, and early thirties treading water without access to truly comprehensive care, the ACA has enabled me to spend the last four years working with my doctors to untangle missed and inaccurate diagnoses. We’ve done sinus surgery so that I can breathe and compiled a list of conditions that include extreme attention deficit disorder (ADHD), generalized anxiety disorder, depression, and post-traumatic stress disorder (PTSD). Now we’ve arrived at the point where we’ve begun treating the chronic insomnia I’ve been battling my entire life.

Reaching the last item on a health-care to-do list I’ve been steadily working my way through may seem, at face value, like a wholly positive development — but it carries with it intense fear and anxiety.

‘This is it. After we get a handle on this last thing, I’m supposed to be a fully functioning adult.’

To be sure, it is a welcome relief to have made such progress and to be feeling better. But we also live in a culture that tells us access to proper health care should foster an official end to the getting-well process — and with it, an expectation that anyone with access to health care should be “fully functional” members of society.

But what happens if, at the end of working with this sleep specialist, I’m not?

The truth is, when I began seeing a doctor regularly, it felt like someone had turned over an hourglass. And now, as the specks of sand fall and I continue to struggle, the self-doubt is overwhelming.

I know that medically, getting well is a difficult and lengthy process that can really suck, and that none of my conditions have cures; they have treatment and management strategies. I also know that learning to manage lifelong insomnia in particular takes work, involving a lot of trial and error, and that I can’t be expected to finish morphing into someone who can handle all the “adult” parts of life right away.

Further, I know that the notion that there can be an official, stamped “end” to the getting well process is, in fact, a myth created by our culture’s inherent ableism and “pull yourself up by your bootstraps” individualist mentality.

But despite knowing all of these facts, learning to shed society’s expectations has, much like the process of getting better, been anxiety-ridden — and only partially successful.

The American Dream myth, after all, idolizes those who GET ‘ER DONE no matter their start in life or the roadblocks that cropped up along the way. Our individual-achievement-exaltation culture tells me I should be able to suck it up and handle my shit, a message I absorbed watching my father pull himself up by his bootstraps to create a comfortable life for our family. This is true no matter what; when help is available (or broadly perceived as such), and one still can’t function fully, feelings of inadequacy intensify.

My personal issues exacerbate this dynamic. I read as able-bodied and capable, and I have always thought of myself as — if nothing else — scrappy and able to get by. So I see myself as lazy when I’m not able to adult successfully, especially after getting quality care for my needs.

This might explain why I felt relieved excitement when I first walked through the sleep clinic doors and why this relief soon gave way to anxiety and panic — a feeling intensified by people in my life exuberantly assuming that I’d be better soon and they could stop worrying about me now.

I see myself as lazy when I’m not able to adult successfully, especially after getting quality care for my needs.

By the time I was called back to see the doctor — a handsome middle-aged man with a kind face, dressed in a festive Valentine’s Day pink shirt with matching red and pink socks — after my initial sleep appointment, I was fixating on how long I’d have after this appointment to pull my shit the rest of the way together. But before my anxiety could fully kick in, the doctor put me at ease by acknowledging the complexity of my case — and reminding me of the harmful and flawed nature of our society’s beliefs.

“I don’t have a cabinet of magic insomnia cure pills in this cabinet,” he said with a half-smile. “You’re clearly an insomniac and because some people’s brains just fire faster than others’ I can’t promise that we’ll ever find a definitive cause with a simple solution. But we can give you the tools you need to keep your sleep issues from controlling your life.”

This assurance from a professional that there’s no singular “end” to my problems, and that this process will take time, has been crucial to remember as I continue in this fight to get well.

I was (and still am) envisioning an improvement in my ability to access restorative sleep by the end of this year. When I expressed that in my initial appointment, the end of 2017 seemed far away — but it’s already Spring and so many things in my life are in suspended animation that resolving everything by the time I should (a word I have imposed on myself) has started to feel impossible. And because the universe has a sense of humor, this worry is affecting my ability to sleep.

Some days I wake up unbothered by self-blame, tackling doctors’ appointments, work meetings, writing deadlines, and assorted life necessity activities. Other days the fear that I’ll never be able to adult on my own is zombifying; it’s all I can do to sleepwalk through the day until it’s over in the hopes that tomorrow will be less bad.

It didn’t occur to me earlier in the process of getting better that I could get care, narrow down my health issues, work on tackling them… and at the end of it all, I still might not be functional. Understanding this possibility has required me to shift my framework from one of achieving some final goal in the future, to one of taking care of myself each day as it comes. I am, as Sarah Fader and I put it in our hashtag for Mental Health Awareness Month, learning to #WorkWithToday — to harness whatever any given day brings to tackle whatever tasks are on the table.

Other days the fear that I’ll never be able to adult on my own is zombifying; it’s all I can do to sleepwalk through the day until it’s over in the hopes that tomorrow will be less bad.

Who knows — maybe a year from now taking on the world and achieving my next set of goals will feel effortless. But right now, that seems impossible despite all my health-related progress. Knowing this, part of my effort to work with today is to meet myself here wherever here happens to be when I wake up and throughout the day.

That means shedding societal expectations and acknowledging my truth — that I am actually afraid that I might never be fully functional and well in the way our ableist culture has taught me to see it. More and more, I’m acknowledging that ignoring or suppressing this fear won’t eliminate it, and that I can’t outrun it.

So here I am, right now, doing the only thing I can: looking my fear in the face and deciding to keep moving forward toward whatever comes tomorrow.