Horror Story - The Stigmatization of ADHD

[jonghee]

I had to get this off my chest to people who can understand. We've all felt stigmatized to some degree by friends, family, even the medical community that is supposed to help us.

It's that last point that I want to touch on. The ones who are supposed to treat us and help us get to a better place are also the ones who can break us, set us back to the point where no treatment feels like a better option.

Let me share my experience. My current doctor rx's me 20mg adderall every month, along with latuda. Because Medicaid doesn't cover Latuda, or so I thought, he would give me samples every month. I thought, "awesome, what a lifesaver. Great doctor." So, every month since then,, I would pick up a months worth of Latuda samples along with a hard copy rx for adderall (I'm guessing he doesn't have e-prescribing set up).

I asked my pharmacist about the Latuda and he confirmed to me not only does Medicaid cover it with prior authorization, but that a patient in that particular pharmacy has gotten it approved that way. Awesome! Next appointment I relay this to my doctor, telling him that instead of samples every month, with prior authorization it can go straight through the insurance. His response: "prior authorization is a lot of work for me." Hence, I got my month's worth of samples again.

Because of scheduling issues, my next appointment was two months out. Once I noticed this, I called to move my appointment up. The soonest was still 5 weeks out since my last, instead of the regular monthly 4 weeks. Even after calling g again and explaining that I only get samples and would run out, the doctor was completely booked and was told that I should do my best to keep that date.

I couldn't wait anymore, as 4 days without the Latuda was already noticeable in terms of my mood and depression. So I became assertive and called the office demanding both the latuda and adderall rx that was already 4 days late.

Another doctor at the clinic called the next morning, asking about whats going on. I told him that it's been a couple of days without meds. 3 or 4 days I figured while trying to shake off the seroquel morning hangover. The first question, or assumption, was "did you take too much adderall? Today is the 4th and you filled on the 3rd." I responded, "are you sure? You think I took too much of the adderall?" At this point I already knew that I was being profiled. The doctor assuming abuse and prioritizing that over the fact that I'm out of my antidepressant. Solution: he called my pharmacy and e-prescribed the Latuda with the prior authorization. Along with writing me an rx for my monthly adderall to pick up, problem sol0ved, right?

After running the errands and arriving home, I had broken down, completely demoralized. The first question (assumption disguised as a question to be honest), was about abusing the adderall. "If it's been 3 days you must have taken more..." Remember, I'm referring to both the adderall and Latuda. There's 33 days in between 8/3 and 9/4. And a month's worth of samples is 28 pills. Excuse me for my math being a little off. Oh, by the way, if you didn't know, prior authorizations take at least a couple of days. They're not immediate, if approved at all. They can take weeks. Of all the days to give me some samples, this would be it, to cover me during that gap. Of course, only the adderall gets the attention. Not the fact that I'm already 5 days without the medication that obliterates my depression and possibly many more days, or the fact that had the doctor submitted the prior authorization in the first place, I could have easily had a refill.

If you've had a similar experience, please share.

[Shnookie]

I’m sorry 😐 U had to go thru this. I’m on

Medi Cal and have been seeing my shrink

4 over 4 years. She is great in electronically sending prescriptions to my local

pharmacy. I had an issue with my

Clonozapem anti-anxiety med. I was running low on the med and called the

pharmacist to tell him of my problem. By

this time, I had been cutting my med in 2.

He refused to give me a Few

Clonozapem to get by until my meds

came thru. Because it’s Class 2 med he

wouldn’t. I was forced to go into a withdrawal and I started feeling that I was

Jumping out of my skin. On Saturday morning

my friend picked me up and fortunately

took my med immediately. The meds took a little time to kick in. I went back to

the pharmacy where everyone knows me

and told one of the pharmacists I knew

about what happened to me. My shrink

increased the amount of dosages 4!the

Month and everything. Is OK now. We have to advocate for our mental health

issues even if shrinks and pharmacists get

pissed 😠 off. What literally kept me

From totally jumping out of my skin

was thinking of my father a child Holocaust survivor his younger sister and my grandparents survived the war. I know this sounds very dramatic, but I need to dig into myself and think of surviving a hellish

Position that I was suffering thru. I truly wish this upon my enemies. I wish U good luck and keep a clear chain of communication with your doctor.

I’m in your corner

[jonghee in reply to Shnookie]

Thank you for your support and your story. Pharmacists like to play God. We need to arm ourselves with information and not be scared. Even though complaints from "crazy people" might not carry as much weight, we need to have the strength to hold those accountable that harm us. I've had enough of being a pushover. If need be, I will find research, articles, anything I can to strengthen my complaint. That way, the next one will know to have respect. Now I have the courage to walk away instead of subjecting myself to substandard care. We have more power as patients than we think. However, most doctors know that most of us aren't aware of this. It's time to make them aware.

[Leonine1 in reply to jonghee]

In Oregon it is against the law to withhold a client's medications, yet doctors and counsellors do it all the time. My son went through hell here. When he first moved here, they withheld his meds, one of which was a benzodiazepine. (Like clonazepam, or lorazepam.) They said he had to go to group counselling 4 times before they would refill his meds. The group meetings were once a week. He had 2 weeks left so he was without meds for over 2 weeks. Withdrawal from benzodiazepines can kill a person. It almost killed my son. He was feeling so bad he came to me and said he was scared. I called the counsellors office and asked them to please refill his meds, and tried to explain what my son was going through. I said I could bring him to the office, and they would be able to see that he was struggling. The guy kept interrupting me saying, "Quit acting like a child." I would start to say something and he would immediately talk over me saying, "Quit acting like a child.". That happened 5 or 6 times until I said, "Quit acting like a dick. ". That was a Friday afternoon. They finally said to take him to the ER. The ER said to take ibuprofen and go see his counsellor on monday. That might my son had 2 grand mal seizures. And nearly but his tongue completely off. That was just the beginning of the hell this county out him through. And the heinous ways they treated me as well. Yes ... Those people who are supposed to be on our side, and supposed to care about our health and well being, don't always do so. They are frequently out worst enemies. They need to be checked

[Shnookie]

Hi Jonghee. It’s Shnookie again. Do U go to a mental health clinic or wellness center where U live assuming it’s somewhere in the U.S. ? Because under Medicaid, U R entitled to see a psychiatric social worker.

My social worker has been working

with on cognitive therapy. Often time,

it has been very helpful to me. There is also

Nami - national mental help group

Please see if it is in your state They usually give U around 15 minutes so I would suggest writing down issues that U wish

to discuss with the intake worker.

I just called them within the last hour.

The intake worker was very helpful especially in his case he was a medical student doing psychiatric internship with

his aim to be a psychiatrist. Try to

find all types of sourced together thru this challenging time.

[Shnookie]

Hi Jonghee it’s shnookie again. U have a great attitude. Another issue I had was that there was not an urgent care that takes

Medi Cal anywhere my apt. So there is

a contractor that the local Medi Cal provider uses to contact those patients who they feel have used their local hospitals too much. So far, they have not informed me of any urgent care facility that I can use. I’ll follow up with them on Tuesday. Stay safe

[jonghee in reply to Shnookie]

Good luck, Shnookie. Let me know how it goes. I wish you the best of luck, especially when dealing with government. The medicaid system is broken. No wonder people can't get off it; it has nothing to do with work ethic or trying to milk the system (as many jerks would have yoj believe). It's because the poor quality of care makes the sick sicker, hence a vicious cycle continues. I'm determined to get out of the system no matter what it takes. Behavorial health provided by the state is addiction and rehab focused. Mood disorders are lumped in with them. Having been in the psych unit numerous times, I actually envied those that were in for detox who were receiving suboxone, subtext, etc. They were in better shape than I was! And as for using the local hospitals too much, from what I have seen and experienced, what else would one expect when the quality of a pcp is subpar, or it takes weeks to get an appointment and there's no other options because you have to go through a pcp and that pcp only. Take care. Stay safe!!

[Shnookie in reply to jonghee]

Thank U for your support now Fortunately, I know how the system works and will pick and choose as I need

[Shnookie in reply to jonghee]

Thank U 4 your support I pick the options that Suit my needsb

[wtfadhd]

Yea, no doctor would treat a cancer, or diabetic, or any other patient that way. Obviously time for another doctor. The amount of time us ADHD folks spend trying to find help is crazy!

[Hidden in reply to wtfadhd]

Hell yes it is. I had to sign a contract and have to be seen face to face every 30 days for a benzo in Ohio it's ridiculas.

[Hidden]

If I had a doctor like that I would see him once and toss him to the wolves. Nobody should ever tolerate that. I make a phone call whether it's Zenzedi or Geodon it's sent in the same day and they are super busy where I go ,but they take our well being personally.

[wtfadhd in reply to Hidden]

Gjs80, awesome that u found a good doc! Yea, my psychiatrist wanted me to wean off my benzo at one point and then guess what... she overdosed on heroin and died at 37yrs old!!! I used to take a ton of geodon back when i was dx with bipolar vs figuring out i had ADHD. I hated geodon but dutiful stayed on it for many years bc a dr told me to. When i finally weaned, it was the worst feeling ever. Yea, i never had any prob at all obtaining my geodon, guess it isnt considered an “ at fault” diagnosis like ADHD. Oh well, its all good now.

[mcfail]

What a nightmare! I guess it underscores the need to have everything’s formally authorized and in the system. Gotta love the system until it hits a snag. Sorry to hear your doctor was too lazy to do his:her job. There are jerks in every field and you found the MD variety

[jonghee]

Thanks for your support. I want to make a positive out of a negative. Complaints from psych patients seem to carry less weight, but I will compile a memoir one day of all the inadequacies of the psych community that hopefully I can get published to help others navigate this terrible system. More than any other area of medicine, psychiatry has the biggest egos and arrogance, in my opinion. Doctors play god more so in psychiatry than other fields, from my observations.