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The Process Of Getting Better Can Really Suck

I will fucking lose it if I don’t acknowledge out loud that some things inherently suck.

Some days, like today, I just can’t. More accurately, sometimes I CAN’T in flashing all caps with animation and, well, here:

We’re taught not to say those words, that they’re self-defeating or will magically become true because we say or think them. Hell, that’s the ENTIRE premise of The Secret — that your self-talk and desires are why you have/haven’t achieved all the things you want. I’ve actively been reclaiming the phrase “I Can’t” for a while now because it frees me up from self-blame and means that I have time to pursue things I Can do and am good at.

We’re also taught to not say “This sucks!” because it externalizes blame — as if an internal blame deficiency is something we’re all suffering from and as if there aren’t real life experiences and structural/systemic reasons for why shit is legitimately hard. Prescribing positivity as though it’s magical fairy dust for people with challenges is mean and ableist. So “This sucks!” is the next phrase I’m going to reclaim — and I’m starting right now as I continue my pursuit of effective treatment for a number of mental disorders.

The reason is simple: I will fucking lose it if I don’t acknowledge out loud that some things inherently suck. Figuring out what kind of care you need, accessing said care, and getting that care is exhausting. And at the point of getting care, you are literally just getting started. Yes, there’s some relief at having survived the no-help-available portion of the ordeal, but you haven’t actually started unpacking or treating anything yet. And, well, that sucks.

And in fact, many things about the process of getting to where I am right now — seeking second-line treatment 17 months after beginning a care plan — sucked quite a bit.

When you spend your entire adolescence with a major depressive disorder your parents ignore like it’s their job; have your Attention Deficit Disorder (ADHD) missed by a mother whose actual job included testing kids for ADHD; and endure your early 20s with a bipolar misdiagnosis that seemed plausible because of the symptoms actually caused by a combination of the depression and ADHD . . . well, that sucks!

When you spend years paying one-quarter of your meager service industry wage on out-of-pocket health insurance because you knew the bipolar diagnosis was coming and you were about to be uninsurable (pre-Affordable Care Act inclusion of pre-existing conditions, #ThanksObama); bounce around to overworked, exhausted sliding-scale psychiatrists at community centers willing to prescribe whatever; and put yourself through multiple drug trials because you can’t afford medication before finally going to a “real” doctor and having her tell you none of it works because you aren’t bipolar . . . well, that also sucks!

And now that you know you aren’t the thing you thought you were (#ThanksMom for the topnotch convincing), you suddenly are left with just self-blame. Again. While clearly still being in desperate need of therapy at 26, but unable to afford it and still eight years away from even a glimmer of hope that our imperfect health “care” system would allow the pursuit of real diagnostic avenues and possibly even effective treatment. Hopelessness and a lack of options . . . well, that sucks again!

Thank goodness that several years later a close friend, who’s a doctor and also ADHD, encouraged me to address my inattentiveness — which I formerly viewed as a character flaw, a form of motivation and competency deficits — and suddenly things made so much sense. I had known I had “issues,” but now I had a starting point in the form of an initial complaint to take to a doctor.

After moving to southern California where the moderate normalization of therapy has meant doctors to choose from who specialize in my issues andtake my insurance (a rarity in our country), I started seeing a psychologist I lovingly call “Doc” a year ago October. With her support, I went to see a prescribing doctor exactly a year ago. Halfway through my ADHD evaluation, my psychiatrist very generously said, “You’re what I call a ’10 out of 10’ in severity; I’m not quite sure how you’ve been functioning.”

“Poorly,” I said. “That’s why I’m here.”

She started me on Adderall which was like a miracle — albeit a miracle my body doesn’t tolerate well. It helped with the multiple all-nighters during my unpaid nanny stint, that’s for sure. But it only lasts four hours a pop and when my prescribing doctor asked me how many hours a day I need to focus, I responded truthfully: “All of them.”

So we tried Strattera — a new, once-a-day med that isn’t a stimulant and has components that also help with anxiety, since all adults with ADHD also have anxiety. In fact, according to my docs and most experts, that’s what undiagnosed adults “present” with; they go to the doctor because of the feeling caused by ADHD. You’re nervous, agitated, generally uncomfortable. All the complaints that go with an anxiety disorder are on the table.

Halfway to a therapeutic dose I stopped drinking coffee. Previously I’d been a 10–12 cup a day self-medicater — all just to be a zombie-esque level of semi-functional. The reduction in bathroom time alone was damn near revolutionary. By the time I hit the 80mg dose I’m still on, my whole life changed. I could sit down and write, I could prep for interviews, I could even — GASP! — get lost in a book or a movie for the first time since maybe middle school. I cried tears of relief almost every day for quite a stretch.

I didn’t have any illusions about being “fixed,” though, and was still seeing Doc every week. With the ADHD mitigated, we had to assess the remaining pie chart of symptoms. My current diagnoses include:

  • severe ADHD
  • dysthymia (like a chronic, low-grade depression that flares whenever it feels like it)
  • anxiety
  • maybe Post-Traumatic Stress Disorder (PTSD)

The PTSD is something Doc has asked me to be open to. We spent most of my first year managing serious life problems like my unsafe living environment and additional crises like not being able to eat, but now we’re exploring more of my history and which of my coping mechanisms are healthy and which indicate long-standing trauma. The way I automatically shut down my emotions for protection has her considering this fourth diagnosis, which may or may not require alterations to my treatment protocol at some point.

I like the way she’s built my profile over time by getting to know me and making me part of her consideration process during sessions. (She also sends the most adorable text messages.) But the length of time it takes to untangle 30 years of life, trauma, and misdiagnoses sucks — especially for someone with my neurobiology. ADHD adults move faster than the general population. I don’t just mean in the stereotypically hyperactive, bouncing-off-the-walls sense. Our brains fire faster and demand more input; we tend to make our own rules, not out of defiance, but because we can process multiple options and create a faster system for doing almost anything that doesn’t require memorization and data regurgitation. So, some days, the length of time nailing down accurate diagnoses and a full treatment plan (both meds and therapeutic needs) is taking this is taking and will continue to take is excruciating.

Especially on bad days. Like today: “new medication day.”

Over the past year, my baseline of functionality had moved up from “HAHAHAHA NOPE” to “Oh hey, I can do some things really well!” And then November and December happened. My first dysthymia flare since becoming functional. I couldn’t get out of bed. A lifelong insomniac, I was sleeping 16–20 hours a day. And the worst part was that I didn’t even care that I didn’t care. That’s the thing no one without a depressive disorder considers — it’s not necessarily constant sobbing; it’s often intense, unrelenting apathy. The danger of feeling nothing is that you don’t care if you feel better. Ever.

As I dug out of that (or it just ebbed back out like the tide; we aren’t sure), I was having trouble focusing again. Or, more likely, my body had gotten the chance to rebound from the frantic pace I’d worked and lived at for a year and now that I had my basic needs met, I could assess how effective my treatment was. The clear answer: not effective enough. I needed a psychiatrist with specialties in my intersecting and overlapping conditions. My original prescribing doctor was fine, but I’m a more complicated case and a lot of the methods and meds for treating adults with ADHD is new. Hell, not long ago, they thought everyone outgrew it by their early 20s.

So yesterday I saw a new psychiatrist.

Aside: psychiatrist is a word I’m still getting used to saying and typing even though I publicly advocate for reducing stigma around mental health, therapy, medication — all of it. It has a pathology attached to it along with a negative connotation. They should be seen like other doctors with specialties (i.e. whenever your condition indicates), but even in communities where enough people are in therapy that that isn’t a big deal, having to seek out a prescribing doctor has additional stigma. It’s “worse” than “just” needing a therapist. Therapy is something you can opt into; seeing a psychiatrist sounds heavier and permanent and clinical. So, I’m trying to say and type it more.

I like my new doctor very much — and not just because the spoons required to find a doc I can get to (I don’t have a car) who treats all my issues, who accepts my insurance, and who is taking new patients makes me want to quit desperately. Dr. C reminds me of every favorite teacher I had in high school. She carries herself with that calm assuredness of someone who has a mastery of their topic/specialty and knows they’ve seen it all. Meeting her was very calming. She asked why I changed doctors, what my current diagnoses were, whether I liked my therapist. We went over my extensive history and all the meds I’d done time with over the years, along with what it was about the Strattera-Adderall combo plus the available medical marijuana card that wasn’t working for me.

An hour later, she wrote down a five-pack of options that are on the table for me and asked if I wanted to pursue them with her. I said an enthusiastic, “Yes, please!” Her preference for changing one thing at a time made me feel comfortable and the first move was to swap out the Adderall and add Vyvanse for the ADHD. I took it today for the first time which means I spent all day watching for side effects and couldn’t sleep last night in anticipation of the change. (Even positive changes cause anxiety in people with anxiety disorders.) And now I get to analyze all my symptoms with more intensity over the next three weeks while factoring in life, boring things like allergies and the flu which affect functionality, and taking extra care to eat and get enough sleep so I can report back with confidence.

That is exhausting. That kind of attention to detail and having to turn down work to take care of myself can, on its own, cause anxiety — something else that has to be factored in. I really want this to work, of course, so I also have to gauge whether I actually feel better or just want to.

And that sucks.

I will also likely need a higher dose of the Vyvanse. I’m starting at 20mg because that’s where I was with the Adderall, but you can take up to 70mg. Most people need between 30–50. The increases usually go by 10mg and I check in with her every two to three weeks to make the shifts. So I may not even know if I like this change for more than two months. And that’s just the first step — solidifying my ADHD protocol. Next we get to analyze my anxiety and start trying additional options. Those are typically incremental drugs as well with side effects to watch for, so I might not be on the road to relief for that until May.

And that really sucks — particularly because I realized in my first appointment with Dr. C that my ability to focus isn’t my primary complaint at this point. It’s still the right thing — both medically and for how my brain operates — to get the ADHD checked off the list before starting to treat my next complaint, but FUCK is this a long process. I knew that it would be; I knew that I likely had more than one disorder and would probably need multiple doctors and multiple treatment plans. Intellectually, I know how this works. But when you’re in it, knowing that “this is how it is” doesn’t always help.

Which means bad days. Like today. And trying to be kind to myself. And continuing to be grateful for the wealth of support I suddenly have in my personal and professional life. This is absolutely the perfect time for me to be going through all of this rough trial and error shit because I am cared for.

The woman — previously a stranger — who saved my life by getting me out of my abusive living situation has proven to be someone of immense character and generosity; she is truly like family. I have never had a roommate who provided more relief than anxiety. She is my daily reminder that people are good. The friends who have stuck around through the past godawful years are the best people on the planet. I love them and we regularly trust each other with our lives. And the amazing board members, editors, and other project heads that I work with have been understanding beyond what is even reasonable.

I know that I’m lucky, that not everyone has this. I know, because it took me 36 years to find it and some of it found me. It’s very tempting to breathe such a deep sigh of relief that I stop doing the very hard, necessary work of continuing to get better and instead assume the impossible: that at the end of this new assessment and option testing I’ll be All Better.

As my friend, the brilliant, funny, and brave comedian and author Sara Benincasa wrote in her upcoming book Real Artists Have Day Jobs, there isn’t necessarily a point in our wellness journey where we can declare, “Ah ha! Success!” and triumphantly be finished with all this suckage:

“There is the urge with any narrative of overcoming obstacles to make it sound as if happily ever after were a simple thing . . . We tell stories about ourselves, about the shit we’ve been through and the fights we’ve fought, and sometimes we want to tie it up in a neat bow for the listeners. But real endings aren’t so neat and clean. And happily ever after only lasts for so long.

“I’ve struggled with mental illness for my entire life, and I talk about it and write about it often. There is a temptation to present myself as ‘healed’ or ‘cured’ or ‘fine,’ to peddle the lie that if someone only follows my foolproof five-step plan (I have no such plan, but I could invent one), they’ll be happy and healthy the rest of their days.

“The truth is that there will always be shit days. Always. I don’t care if you’ve gone 365 days feeling blissful and glorious; eventually, you will get a flat tire on a busy highway, or catch a case of explosive diarrhea on an airplane, or find yourself strongly tempted to do that bad thing you swore you’d never do again.”

Today was just a shit day. Tomorrow is another day — it might be a shit day too, though I’ve uncharacteristically planned to take the day off, so probably not. But it still could be. That’s the thing with most of my disorders: I don’t have to actually do anything to have a bad day, they just come. And then they end. And there will be more. And those will end too.

I talk and write about the reality of this struggle in the hopes that you might be kinder and more generous with yourself on your shit days — especially those of you who are still back in the middle of my story, not yet able to get care for whatever reason. There are a lot of us. You don’t have any responsibility to perform “healed,” “cured,” or “fine” for anyone — not even yourself. Having a bad day doesn’t mean failure and it doesn’t necessarily mean that your coping mechanisms and/or treatment and/or life choices are all wrong.

You deserve to be well and happy; you are allowed shit days. Try saying “this sucks” on your next bad day and see if you feel a little lighter. I know it helped me immensely today.