Thread by @smashley137

Thanks to @yashar and @danidonovan and countless others sharing our stories, #ADHD is trending. One facet I haven't yet seen discussion of (or I've just missed) is how difficult it is to jump through the federal regulations hoops to access medication. 1/

I've written about this before, particularly during the 6 months I had to go without healthcare last year because that's how long it took the state I'm in to enroll me--a full-time graduate student--in its Medicaid program (story for another time). 2/

First, there are the logistical difficulties. Everyone is different--I have narcolepsy in addition to ADHD, so Vyvanse works to treat both, but I have to take it every day. That means every 30 days, I have to get a refill. 3/

Because stimulants are controlled substances, you can't just have your doctor send your prescription to the pharmacy. You must physically take the script to the pharmacy yourself. 4/

This is assuming you have the privilege of healthcare for said doctor and prescription. During the 6 months I was uninsured, paying out of pocket for a medication I couldn't live without (again, narcolepsy) ran me over $300/month. 5/

Furthermore, the financial costs are nothing compared to the difficulty of finding a doctor (for whom you're also paying out of pocket) willing to prescribe this medication to someone they haven't been treating. 6/

But even with insurance, doctors vary. Some are lovely people who are willing to give you 3-4 scripts at a time, dated, to ensure they can't be filled all at once. No problem. My current doctor insists I physically visit his office to pick up the script each month. 7/

You must wait 28-30 days between filling scripts. Meaning that for once in my life, every month I'm filling a prescription at the last minute through no fault of my own. 8/

The one- or two-day window I have to fill my script can be a really inconvenient time, but it always take first priority. The problem comes when it's the last minute, and the pharmacy doesn't have the medication or screws up in some other way. 9/

Because these are federally controlled substances, they aren't allowed to tell you over the phone whether they have this medication in stock, so it can become a matter of literally driving to multiple pharmacies before filling it. 10/

As an out-of-state student, I also spent my first year of law school fighting with pharmacies in Indiana who didn't want to fill my Ohio scripts because they were written by an NP instead of a doctor, but again, that's another story. 11/

I'm fortunate to live in a college town w/ several pharmacies, including one open all night, & I can't tell you how often I've filled this script at 2 or 3am. But others aren't so lucky. If the only pharmacy nearby doesn't have it in stock...that's a day or two lost. 12/

Those of us with ADHD already struggle with administrative tasks, like getting prescriptions filled. To add so many other steps to the process makes it extraordinarily difficult in a way I think it's hard for neurotypical people to understand. 13/

Besides the logistics, there's the inherent shame that comes with being on these medications. There absolutely shouldn't be! But such a stigma has been placed on both ADHD and the medications that we need to function that any time I've had to advocate for myself to get it... 14/

...I've just been afraid I'm sounding "too desperate" like I'm up to no good trying to get this script. But it's a desperate situation when I run out every month and have just a day or so to refill. One person's smallest mistake can result in disastrous consequences for me. 15/

I've found myself repeatedly emphasizing the fact that I need it for narcolepsy because it's always felt like doctors/pharmacies take that more seriously than "just ADHD." This is not okay! 16/

Self-advocacy takes all the energy I have in me. Convincing doctors that this medication works best for me, despite their doubts. Explaining to pharmacies why they really need to work with me because I've done the most that I can do to fill this on time. 17/

And energy is in short supply for me most days. Especially when so many seemingly "basic" tasks take so much out of me. Just successfully getting a refill feels like the biggest accomplishment each month. 18/

I don't write all of this because I think regulations need to change. I understand why they're in place. I write all this because other than those of us who jump through these fiery hoops every month, I don't think there's a lot of awareness of the obstacles to treatment. 19/

When you're already dealing with the guilt and shame that comes with living with ADHD or other disabilities or mental illnesses, the added stigma of just trying to treat your conditions becomes overwhelming. 20/

There are unhealthy expectations already put on people with mental illness/other disabilities to be superhuman and work to fight these conditions at all times. But we're human. And our conditions sometimes leave us with less fight in us than we'd like. 21/

All these difficulties I've described above can take place even when I've done my part flawlessly. But I'm also human. And I have ADHD. And sometimes I make mistakes like forgetting to get my script in time or not returning a call. 22/

And then there is no grace, and I'm left feeling like it really is all my fault. 23/

I'm not sure how to neatly wrap this up. It has somehow taken me up until today to even discover the "+" button instead of replying to tweets to make a thread😂 I just wanted to contribute part of my story to the conversations about #ADHD right now. 24/

I'm so grateful for everyone who has shared their stories. This disorder can be so isolating. I've fought hard this year to stop mentally referring to myself as lazy, undisciplined, or a child every time ADHD wins a battle. Thanks to you all, I know I'm not alone❤️ 25/25

(So many more great threads keep filling my feed, including those from @Pappiness and @HoarseWisperer. Overwhelmingly grateful for this community!)