Disclaimer: I’m referring the the US medical system, but I imagine people in other countries may encounter similar things.
I cannot be the only one who has had this experience, but all my dealings with the medical industry feel like they were refined by a group of psychologists to exploit the weaknesses of those with ADHD.
The volume of calls, appointments, and paperwork I had to full out to get a diagnosis and prescription for treatment is completely unreasonable to expect someone with poor working memory and attention issues to navigate.
Then, to stay on medication, you need to schedule and make appointments with a psychiatrist every month, for the rest of your life, and if you miss a single one, you will run out of meds (and likely charged a fine), which will make it even harder to remember to make the next one. If you miss too many, that psychiatrist will refuse to see you again and you have to go back to your PCP to get a new referral.
Look, I understand that their time is valuable, but this system couldn’t be designed any other way to be more accommodating to people who clinically forget things?!
It’s like designing a wheelchair ramp that’s actually just stairs that are 3x as steep as the regular stairs. Also, if you fall to the bottom, someone takes your wheelchair until you can climb back up.
Anyone that might be thinking this is an exaggeration, it is not.
My wife has adhd and takes vyvanse for it, a strictly controlled substance. I have to be extremely vigilant about making sure her prescription gets to the pharmacy and that the pharmacy fills it correctly.
We recently moved across country. Here’s a fun puzzle to work on.
The amount of times I had to explain this to people and just exasperatedly go “so should I just prepare my wife to go through withdrawal of this medication she has been prescribed and taking for nearly a half a decade? Is that ok with you, is that an ok patient outcome? Is that what you’d let happen to your wife”
Luckily shes married to an angry, persistent, yet very polite man who will shame the shit out of people until he gets it fixed. But I have no idea how she was supposed to navigate this alone, while facing the terror of withdrawal.
How did you manage that? I’ve been worried about moving out of state for this reason (not that I have immediate plans, but I’ve thought about it).
It took a lot of persistence and luck. I had found my wife a new doctor to do her medication management and I ended up just politely hounding her staff explaining calmly but firmly the catch-22 I found myself in.
The trick I’ve learned over caring for my chronically ill wife, who I love with all my heart, is to be very nice to the front line medical people but to never give up. They take crap all day from angry people, so I make it my mission to never yell at them, never get cross with them. I just explain what’s going on and my goal is always to get them on my side, be my person on the inside.
That worked here too. After calling a couple times and being nice, one person working the phone remembered me and I could tell they wanted to help. I just kept asking them for options, people like it when they can be part of solving the problem. They got in the doctors ear about this and suddenly if she did a virtual evaluation of my wife she could write a preliminary prescription to fill the gap.
Is this how things should work? No. Should you have to beg and cajole and get lucky that someone will help you? Absolutely not. But this is how I’ve figured out how to navigate this broken system.
Tl;Dr - Be very nice to office staff, be persistent, make it a problem you can solve together, keep reminding them that you are advocating for a flesh and blood human being you care about and that them just suffering will never be a good enough answer.
Also don’t get frustrated if you don’t make progress and need to call back, I think it only took calling 3 days in a row for them to figure out they better help me or they were going to have to talk to me every single day