Barriers to treatment

It’s still ADHD Awareness month I think. In order to spread awareness, I thought I’d get vulnerable and share a struggle I’m currently going through. I take medication that is a controlled substance. This means I have to pick up a paper prescription, deliver it personally, showing my ID to the pharmacy and once it is filled, pick it up personally, ID in hand. I also can’t fill it before the other runs out, and if I lose the prescription my doctor will likely not write a new one for me to replace it until the next month. I also can’t leave it with the pharmacy until it is time to fill it, they won’t store them for fear of theft. This makes sense, there is a lot of abuse and theft of controlled substances. It was a bit difficult to build this routine into my life, if you understand ADHD you can understand why, but after 6 years of treatment I have learned to live with this.

I’m very lucky to have insurance that covers medications pretty thoroughly, but there has been a requirement on this particular medication my insurance imposes that I have to get a yearly note from my psychiatrist — prior authorization — saying that I really do need this medication. Not because it’s a controlled substance, not because they do this with all psychiatric medications, but because I’m over the age of 19.

You read that correctly — I’m older than 19 (I am! A lot! SO MUCH!) so they have to double check that my doctor really means what he says when he prescribes this medication. That he wasn’t just kidding when he wrote that specific medication and dosage, my name and date of birth out on his preprinted prescription pad with security protections in place so it can’t be duplicated.

“You really mean this?” they metaphorically ask my doctor that has been practicing psychiatry since 1992. “You sure? We need you to fill out a form though, just in case you weren’t sure. Oh, we won’t initiate the request for that form next year, or the years after that, though. Your patient needs to remember it. They will just get denied coverage at the pharmacy and be charged about what they pay in monthly rent. Oh, memory and organization is an issue for them? OOOOPS! I guess there is nothing to be done about it. This is how life is forever.”

I’ve been on this medication since 2009 or so, except when I have been actively trying to get or stay pregnant. Every year for the last six years I have gone through a week of phone calls and paperwork. A week of tedious tasks and hoops that are a challenge for those of us with diminished executive function without the medication to manage the diminished executive function.

I’ve learned in the last two years how to survive off the medication but I am far from thriving without it. Every task that isn’t a creative challenge that attracts my natural hyperfocus takes an enormous amount of energy to start, maintain and complete. Really basic tasks wipe me out mentally and physically, draining me of energy I should be using towards the creative work that pays my bills. Emotional regulation is really difficult, and my anxiety goes up because I am terrified I will yell, cry or laugh at something inappropriate and I constantly feel like I am disappointing everyone, including myself.

This medication is a vital part of my life as a productive member of society.

The DSM-V came out in June 2013. It made some significant changes to the ADHD listing. One is moving it from a category of behavioral disorders to one of neorodevelopmental disorders. The other change is recognizing that symptoms of the disorder do not disappear after childhood, they often persist into adulthood. Unofficially that had been recognized for a long time, but this is official.

When I read that in 2013 I was so relieved. Almost every year I had one to two weeks of major disruption in treatment because of this prior authorization requirement, which is based on the idea that it is rare that symptoms of ADHD would persist past the age of 19. It was official that there are adults with ADHD, so I should be treated equally with my 12 year old counterparts.

RIGHT?! Nope! No way. No change.

I didn’t expect the change in 2013, these things take a while. I gave them a pass in 2014, and 2015 I was a grieving zombie so I didn’t pay attention to what steps I had to take to get on a normal track. It’s 2016 now, and I’ve been off my medication for more than a week while trying to get this form filled out and submitted to the correct people. I have filed a complaint with MedImpact, letting them know it is a an outdated and discriminatory policy that sets up yet another barrier to treatment.

I have kept this kind of thing to myself in the past, because I used to think these things made me look like I didn’t have my shit together and that somehow this was a lack of an ability to be a basic human. I have worked really hard in the last 6 or so years to manage this invisible disability to mostly remain invisible. Or at least comes off as minor “quirkiness.” It takes a lot of energy to maintain invisibility for me. I would rather use that energy in other ways.

I have also avoided talking about this as much as I want to because I see so many people still questioning whether or not ADHD is a thing. I still see posts and comments about it being made up so parents don’t have to be accountable for their children’s behavior. Children diagnosed with it are still shamed that they just aren’t trying hard enough by teachers, and they are denied services from institutions. There are insurance companies that require me to double prove that my doctor has diagnosed me correctly in order to receive treatment.

I am just one little shrimp on a treadmill.

I don’t have the energy to spare from trying to keep my life from exploding into unrecoverable chaos to defend how my brain was made. ADHD is so a thing. I don’t want to hear about you not “believing” in it. What a privilege to have that opinion. I don’t get the luxury of not believing in it. I have it. Not being diagnosed with this disorder until I was well into adulthood has ruined several aspects of my life that I am still recovering from. (Women are often not diagnosed until they are adults, efforts have been made in the last decade to recognize it earlier. In women it is frequently accompanied by depression and anxiety — check! — and it is often compounded by the societal expectation to be a super mom, super woman in charge of running the home.) Financial and legal systems are an especially terrifying nightmare for me to navigate. I have a team of every kind of professional I can afford working with me — psychiatrist, therapist, professional organizer and I had an amazing ADHD coach until I couldn’t afford it anymore. (Even though there is research showing that ADHD coaching is highly effective treatment, insurance doesn’t cover it. HSA won’t reimburse it. Coaching focuses on practical strategies for the challenges ADHD poses, whereas therapy focuses on the emotional aspect of it. If I were 10 years old I could get occupational therapy covered, but adults can’t get what looks like “life coaching” covered. )

I am grateful to have this brain in so many ways, with support and therapy I have found ways to take advantage of the gifts of ADHD so it starts to compensate for the challenges. I am privileged to be born to a family that loves and accepts me, find a job that is patient, flexible and provides decent insurance. I am lucky to have found a community of people that understands and believes in me. I recognize not everyone has that. If I am still struggling with managing my ADHD with all of that in place, imagine how much a person with ADHD struggles without that basic level of support. I want the world to stop making us prove that this is real and start listening.

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