The ADD/ADHD Thread (cont'd from Peeves)

Selerik

@Auspice If I were in your area I would without fail. Unfortunately I live in Arkansas, not a land known for a glut of MUSHers.

Three things tend to get doctors to change their tune on mental health. There is a lot of things I could ask to customize this advice for you, but these are almost always applicable.

'Have you used the DSM-5 to evaluate what I've been telling you my symptoms are? Are you trained in the DSM-5? If not, can I been seen by someone who is?'
The DSM-5 is the diagnostic criteria for mental disorders, fifth edition. The one currently in use everywhere, and the one off which all doctors have to demonstrate a patient's medical needs.
'I've reported my symptoms to you and stated the care I'm seeking. You've refused to provide me help for what I am seeking help with. I would like you to put your refusal into writing, if you're really going to tell me no again.'
By putting it in writing, a doctor risks malpractice if your situation is ever reviewed. They know that. Many fold when this comes up, but a few will get erratic. If they get erratic, MAYBE they were not a good person to be seeing in the first place. I realize you may not have a choice with your insurance situation, whatever it is.
'This condition is threatening my ability to do my work. I've spoken with an attorney who handles disability claims, and I will need a copy of all medical records you have on file along with your choice not to treat me. If I can manage to keep my job, great, but if I lose it because of this I need full documentation.'
Attorneys who handle such claims pro-bono can be found in every state. They do indeed require your full medical records related to the condition you're seeking disability for, so this is an accurate description of your situation. Saying you've spoken to one isn't accurate as of today, but you could easily fix that.

I sincerely wish you luck and hope you get the care you need.

Auspice

@Selerik

So I'm personally really dicey on calling on the DSM-5 because it was released right before the findings on fibromyalgia were confirmed about it being a physical health condition and thus per the DSM-5 it's still considered a 'oh it's all in your head and because of your depression'

Which means I may run a huge risk of, if I call on DSM-5, having other issues I suffer brushed off.

But I do appreciate that. It's more a matter of... Like @Macha said, I guess being willing to get it all written down (though I once had a doctor just refuse to even keep talking to me when they saw I had a list of symptoms I'd been tracking, so it's hard for me to even do that now).

Ugh, bad doctors can fuck us up for life I swear.

Rinel

@Wretched said in The ADD/ADHD Thread (cont'd from Peeves):

@Auspice I am also bad at self advocating, I always feel like a kid in the principals office when i go to the doctor.

It literally took me becoming an attorney and setting professional standards for my client relationships before I was confident enough to tell a doctor "I view this as a relationship where I tell you what is happening and you work with me to solve it, and I need to know if you view it the same way." (ETA: Pretty sure my voice was shaking as I said it, too.)

It's really hard. Try to remember who is paying whom. Doctors aren't obligated to prescribe you oxycodone for your headaches, but they sure as hell can sit down and listen to you about the pain.

JinShei

@Selerik said in The ADD/ADHD Thread (cont'd from Peeves):

@Auspice If I were in your area I would without fail. Unfortunately I live in Arkansas, not a land known for a glut of MUSHers.

Three things tend to get doctors to change their tune on mental health. There is a lot of things I could ask to customize this advice for you, but these are almost always applicable.

'Have you used the DSM-5 to evaluate what I've been telling you my symptoms are? Are you trained in the DSM-5? If not, can I been seen by someone who is?'
The DSM-5 is the diagnostic criteria for mental disorders, fifth edition. The one currently in use everywhere, and the one-off which all doctors have to demonstrate a patient's medical needs.

It's also missing a ton of "newer" evidence, and has very little evidence base. It is still, however, a useful tool to beat recalcitrant doctors who don't know enough about mental health with. We use the NICE guidelines over here for the same beating. When it comes to fibro though, the medical profession are a bit behind the curve. Is this useful to take? - a little old but if it says the treatment you want, it is a source they might listen to.

Ganymede

@Selerik said in The ADD/ADHD Thread (cont'd from Peeves):

I realize this falls under bringing a thread back from the dead, but this is something I wanted to share from the beginning.

Let me just chime in to say that you should never feel bad about bringing this particular thread "back from the dead." We all have health issues, physical or mental, and some of us (if not all of us) can agree at the very least that our health is a serious issue that many gamers avoid addressing or discussing because of the ever-present fear of social stigma. Although I do not suffer from anxiety or attention-deficient issues (or can keep them under control via my own tools), reading this thread has been very helpful in trying to understand others, particularly my daughter (who is seriously hyperlexic in a way that is baffling, creepy, and amazing all at the same time).

While I wish our other discussions could be as civil, this particular area is supposed to be civil and safe. I will police this thread expressly for this purpose.

@Rinel said in The ADD/ADHD Thread (cont'd from Peeves):

It's really hard. Try to remember who is paying whom. Doctors aren't obligated to prescribe you oxycodone for your headaches, but they sure as hell can sit down and listen to you about the pain.

This is really good advice, but I see it a little differently.

We are generally socially conditioned to accept authority without question. Who can blame us? That's how many of us were probably instructed as we went through our formative years. But now that we approach a different (not quite as, but supposedly) adult world, our interactions with professionals is a matter of finding a person we feel comfortable working with.

I think that people too often enter a doctor's office looking for a prescription or a cure. That's not going to work in the long run. Patients need to go into a doctor's office expecting to work with a professional to find a solution to health issues, and the best offices work this way. It is no different than seeing a therapist for mental health issues or a lawyer for legal issues; you are there to disclose everything that is remotely related to the issue so that the professional can figure out how to improve it. Just as therapists cannot give you a "one-shot" solution and a lawyer cannot give you a "guaranteed outcome" (and be wary of the ones that do), a doctor often needs to work with you over a period of time to craft a solution that works for you.

Unfortunately, we do not always have the luxury of being able to do this, but for some of us it is a necessity. So take the time to get comfortable with your professional, and more importantly find one that does the above: sit down; listen closely; and discuss the issue in full. You have a better idea of how or when you feel a certain way, and it's up to the health professional to piece together what and why you are feeling.

I'm not a doctor, but I've pieced together the above from my partner's experiences as a physician's assistant (and she's a lawyer and a PA).

Auspice

tbh, the best experiences I've had with doctors can be summed up with two (and much as it might surprise people: both were white dudes):

The first told me, straight up: 'You know your body better than anyone, so if you say there's an issue, I believe you.'
Holy shit, I miss that guy. If you live in the Cincinnati, OH area, I will do everything I can to dig through my shitty memory to remember his name.

The other was a doc in SC who had witnessed firsthand how much fibromyalgia can fuck with a person's perception of pain and as a result, he treated anyone with it more carefully and was willing to hear us out when we said we thought something was wrong instead of just brushing it off as 'in our head.'

Selerik

@Ganymede Thank you for supporting my vocational necromancy.

Selerik

@Auspice I wish I'd found those doctors when I moved. Sadly I had to go for a third sort of doctor to make it work for my Fibromyalgia. I've been more fortunate with my effort to find mental health professionals.

So, I work for a Public Institution. That means I'm supposed to file for Americans with Disabilities Act (ACA) as well as Family and Medical Leave ACT (FMLA) accomodations, each of which have their own paperwork and procedures.

For either to recognize that I have Fibromyalgia I need to specifically see a Neurologist. There is some debate on which specialists are best for actually treating Fibromyalgia and Neurology is a broad field. No one near me has explicit expertise in Fibromyalgia.

Instead, I found a person specialized in arthritis who was willing to nod his head and sign the papers and charge me for the consult. I'm required to go back and essentially pay this guy who has only the vaguest notion of my condition roughly $100 every Spring so he'll sign that year's batch of paperwork, and that is with insurance.

I see it as my disability tax. Doesn't help me get better, but keeps my work from being able to retaliate and punish me if the condition ever interferes. I've been fortunate to have a desk job, and with the accommodations I can log in remotely to do my work when having a flare up and they can't fire me over it.

Macha

@Selerik I wish it worked like that for me. My therapist keeps suggesting I try to file for disability. (She is not the only one, one of my other providers has to). But I'm terrified.

Auspice

@Selerik said in The ADD/ADHD Thread (cont'd from Peeves):

Instead, I found a person specialized in arthritis who was willing to nod his head and sign the papers and charge me for the consult. I'm required to go back and essentially pay this guy who has only the vaguest notion of my condition roughly $100 every Spring so he'll sign that year's batch of paperwork, and that is with insurance.

In the past, I've had to see arthritis specialists as well. It's just sort of what I've expected. Some have been great, others not so much. It seems to just be where we fibro sorts get slotted.

What was weird (man do we need a fibro or chronic illness thread???) was at the dentist lat night, when I was giving my brief-medical-history, the dentist was familiar with fibro???? I did not expect that. I mentioned it off-hand just expecting her to handwave it off and not even acknowledge it but she did. I was downright shocked.

Wretched

@Macha Start now anyway, it takes forever, took my mother years and she was near bedbound for a time.

Auspice

Two times a year, roughly, my ADHD goes into a sort of hyperdrive.

I lose all function as a human being.

I sometimes struggle to process entire paragraphs because I lose the thread halfway through. I pause a 5 minute youtube video to go watch a 3 minute youtube video to go watch a twitch stream to mute it to go back to the minute to pause it to read a news article to go watch Netflix to tune it out to open Hulu to realize, five seconds later, that both are running at once on two separate monitors.

I read texts and never reply.

Sounds, flashing notifications, all upset me and irk me.

I forget I'm in a scene two poses in.

I make to-do lists with reminders, but the instant I see the reminder... I forget.

I can go twelve hours without eating because every time I go to the kitchen, I get distracted on the way and do something else.

The only upside to it all is that my need to keep my house and living areas at least somewhat clean and organized go into hibernation because the only thing, literally the only thing I can manage, is to take care of my cats. They are fed. They are watered. Their litter box is clean.

I've had a sandwich today.
I've had water.

I ate some chips and salsa tonight.

I never managed to figure out dinner.

Maybe tomorrow will be better.
Maybe tomorrow my brain will stop firing on every cylinder all the time nonstop and I can get something of consequence done and feel normal.

Warma Sheen

What science doesn't know about the brain is voluminous.

I believe ADD is just the brain functioning at at increased speed, the way a baby/child's does as it learns the world around it. Eventually as you grow older that shuts off and slows down, except sometimes it doesn't.

For whatever reasons, people have decided the way to address this is to slow the brain down with medicine rather than speeding up life and learning. If it helps people be more "normal", then cool. But would anyone try to slow down Usain Bolt? There should be more enhanced educational programs that utilize the increased brain functionality in children rather than labeling it a problem to stigmatize people for thinking too quickly. Haters gonna hate.

Remember when science also thought lobotomies were proper solutions for people that weren't considered normal? And the list of things science has been and will be wrong about can go on and on and on... Especially when most science is backed by pharmaceutical companies. Opioid crisis anyone? But these are the same people doctors take money from to push their drugs and we trust it? Okay.

Auspice

@Warma-Sheen

please stop.

I know you mean well but I can't even manage to eat some days despite everything I do.

No.

Rinel

@Warma-Sheen

ADHD is a relatively well studied condition. It is not the brain functioning faster than normal, although it certainly can feel like that. It belongs to a vlass of diseases known as executive function disorders. OCD is another executive function disorder.

The drugs for OCD and ADHD do not slow the brain down. Very few drugs actually do, and the ones that do tend to be reserved for people with epilepsy and severe anxiety.

Auspice

Okay, this will not be nearly so eloquent or understandable (by mere reasoning of being written by a neuro-atypical) as the spoon theory, but let me try.

I view my brain as a set of computer processes. Most of the time, it is a multi-threaded system that is prioritized. There are a lot of threads, but they all have their own functions and even if there is a lot going on, I can make sure they are doing what they're supposed to and that things are prioritized, sorted, and functioning properly.

There is the constant steady train of thought.
There is the music and/or ear worm that helps keep everything else orderly by setting it to a soundtrack so that nothing gets too loud or out of step.
There is the on-going task list.
There is the daily cron (wake up, hygeine, eat, chores, etc.).

Everything is multi-threaded: 'dinner' is a task that is broken down into other tasks (make meal, clean kitchen as I go, eat...), but it falls under my daily needs.

Something new can get properly added into the stack where it needs to go.

Some things remain 'background noise' unless a sub-system brings them to the forefront, like driving. Driving is driving unless a sub-system says 'Shit! This asshole is about to cut you off, put everything else on hold and deal with it.' The general noises of the world (birds, office conversation, air conditioning) are background noise, but a fire alarm isn't.

For someone with ADHD, you may have more threads than most. And sometimes keeping them sorted is difficult because things like to cross-threads or miss-prioritize themselves. And sometimes those background threads don't stay background. The average person can look at their stack and go 'You belong here' while the ADHD person goes 'haha fuck the stack.'

The problem is when the 'executive function' program faults. And that's what happens to me now. The 'executive function' program is what keeps everything threaded and prioritized. When it goes into fault, everything becomes unthreaded and everything becomes priority 1. Which means nothing is prioritized. Which means the air conditioning? Is just as loud as the fire alarm.

Which means the kid on the side of the road is just as important as the person merging in on top of me.

Which means watching a YouTube video about a sport I don't give a shit about is just as important as taking a shower (which I didn't do last night).

Which means my usual cron to check the gas in my car twice a week fell out completely and I may not have enough gas to make it to the gas station (I rarely get below a third of a tank).

I have coping mechanisms. I have coping mechanisms for my coping mechanisms. Almost everyone I've ever dated and many of my friends have made fun of me, a lot, for my lists and my reminders and my calendar apps, but when the executive function program fails, none of this matters because the instant I see a reminder I go 'cool' and then my sleeve itches and you know what happens to that reminder?

It's off the stack. Only what is currently on the very top of the stack matters because there are no threads. And this, this is why atypicals get so frustrated when other people try to explain to us 'how' we should be because of some book or article they read. Because until you're in this place, you literally cannot understand it.

I was once on a medication that treated OCD. I didn't know I even had OCD (and even laughed at being diagnosed with it) until I was on the medication. I had become so used to living with it that I didn't even know a difference was possible. Doing things like holding conversations while rearranging other people's bookshelves was just so normal to me and, by my reckoning didn't impact my life that I didn't realize the severity of the impact it had until I no longer had the compulsion. Even now, some 18 years later (the medication isn't in the US anymore so sadly, I don't get to have it anymore), I can only think of those couple years in abstract. My OCD, in my mind only affects me marginally that I barely consider it an impact. But I know it DID to the point that those two years were a wonder and an amazement and like a breath of fresh air.

So please, for the love of everything that is holy, do not tell people with ADHD, depression, OCD, etc., that it's just a matter of 'thinking differently.' Because I motherfucking assure you that we already do think differently than you do.

(btw this post only managed to get written because I spent my entire commute thinking about it, nonstop, nearly missed my bus stop, then sat down to begin drafting it immediately upon getting to work... because I knew if I began thinking about ANYTHING ELSE I would forget about it. You're fucking welcome.)

faraday

@Rinel said in The ADD/ADHD Thread (cont'd from Peeves):

The drugs for OCD and ADHD do not slow the brain down.

Exactly. In fact, the drugs for ADHD are primarily stimulants. One way I've heard it described is like the ADHD brain needs extra stimulus to focus. So instead of focusing on the boring homework, the brain is like: "oh but what about this? or this over here? or that?" The medication helps to combat that by giving the brain's neurotransmitters what they're looking for, thereby helping you focus.

These are issues with the way a brain works on a chemical and organic level. It can be measured with MRIs and stuff. Some people need meds, some people can cope without them. Just as not all diabetics need insulin. But for the ones that do, telling them it's all a big pharma conspiracy theory is nonsense.

Auspice

@faraday said in The ADD/ADHD Thread (cont'd from Peeves):

But for the ones that do, telling them it's all a big pharma conspiracy theory is nonsense.

I get chemical depression.
I also get a kind of special depression that is only combated by going to the ocean every few years.

I can't combat one with the other.

I can't go for a walk in the woods and get the same wonderful amazing feeling I get that I do by standing on a beach and feeling the sand between my toes and the ocean breeze in my hair.

But the feeling of standing in the surf is also completely negated if I'm not on medication that balances out the chemical fuckery in my head. I have to have both.

Just like if they hadn't cut out the cancer cells that were trying to dig into my spine, no amount of weird-ass plant cocktails and detox shit would have ever kept it from wreaking havoc on my body.

Selerik

@Auspice My heart goes out to you for what you're experiencing.

It is a shot in the dark, but I and some others I know with ADHD have had things get really extra shitty during an allergy flare-up. The way you said twice a year, maybe it is something seasonal.

For me it was all the congestion in my upper sinuses (meaning I still breathed clearly) just made it harder to think period. Happened after I moved off the coast and discovered the wonder of having four seasons. I started getting allergy shots and taking Singulair. I didn't realize how bad it was until I was treated, and realized how much I'd been in a haze.

This isn't some magic wand solution, I give it less than half odds since there is SO MUCH that you could be experiencing. It is just what I've got.

Auspice

@Selerik

My allergies are worse here in TX and have been terrible the past few weeks.
I did just get over an absolutely horrendous sinus infection.

...but I've been on singulair for about six months.

So either the singulair isn't working at all (which is entirely possible and while ADHD is the primary reason for a doc visit next week, allergies are another part), or it's not the reason. $:\$

But thank you.