Someone with ADHD: I really really struggle to fall asleep at “regualr times”, no matter how tired I am I just can’t seem to fall asleep at 10 pm!!! But I almost instantly fall asleep any time after 2 am. What should I do?

NT sleep advice: You, someone who cannot conceptualize time in any way whatsoever, need to identify TWO HOURS in advance when you want to sleep and, with your executive dysfunction that makes making decisions at will almost straight up impossible, make the decision to stop whatever you’re involuntarily hyperfixating on. Then, you, with a focus disorder that makes it so that you have to be doing something at all times, sit and do nothing for 2 hours. You cannot read. You cannot be on your phone. Do not move. Do not talk to people. Just sit and do nothing. If you can’t fall asleep it’s because you Did Something and it’s your fault. Bluelight 24 hours before you want to sleep is the reason. Never look at a TV, Phone, computer, OR let one of these objects be within a 24,000 mile radius of you. Never ever go NEAR your bed unless you’re already asleep. If you are AWAKE in your bedroom ever you will not be able to sleep. 

What helped was 1) anxiety meds and 2) melatonin. I have multiple timers on my phone to ensure that I take both of these before 10 PM every night, and if I’m consistent about it I can reliably fall asleep around midnight and wake up at 7 even without a morning alarm. (I still HAVE a morning alarm, obviously. not gonna tempt fate over here.) Waking up before 7 and being any kind of functional is still a challenge, but if I had to I could probably make it work.

Also, I have emergency backup Xanax (in a tiny baby dosage) for nights when my usual routine fails to silence the hamster wheel. I go through a 30-pill refill of that in six months or so, normally. Although 2020 has been, uh, a lot more anxiety-inducing than average.

So y’all know the ADHD perfectionist thing, right, the “if I can’t do it right i might as well not do it at all?” thing? Your brain tells you the same thing about sleep. “Oh well, didn’t make it to bed by 1230, guess I’ll stay up till 1; oh well, didn’t make it to bed by 345, might as well stay up till 4.”

Please learn that that is bullshit because sometimes just consciously being aware that what you’re doing is an ADHD thing is enough to remind you that you’ve got coping mechanisms for this and can shock you out of your dysfunctional pattern.

Also your ADHD brain is a shithead and will sometimes say “well I couldn’t get to sleep on time, might as well just stay up all night.” And FUCK YOUR ADHD BRAIN, any sleep is better than no sleep, Mythbusters did a thing about that, even just going to bed and closing your eyes for 20 minutes is better than not getting into bed at all and sometimes that’s ALSO enough to trick your brain into going to fucking sleep.

B) DON’T LAY IN BED AND TORTURE YOURSELF

If you’ve been in bed and unsuccessfully trying to fall asleep for more than an hour just get up (or even if you don’t physically get up just pick up your book or your phone or whatever). This isn’t “Fine I’ll Just Stay Up All Night” this is “my cycling thoughts aren’t going to let me sleep so I’m gonna distract my brain by focusing on something else for a bit.”

If you try to force yourself to fall asleep you just get stuck in a “I should be asleep, why am I still awake, what the fuck is wrong with me just go to fucking sleep” thought pattern and keep yourself awake. Just. Play some tetris for a bit. You’ll probably get sleepy pretty soon.

C) BRING YOUR HYPERFIXATION TO BED. YES EVEN IF IT’S BLUE LIGHT.

Okay so I quit smoking about a year ago and that’s the thing that’s made the single biggest difference in my sleep schedule because when I was still smoking I’d sit in the garage next to the ashtray and read/write/draw/whatever and have a cigarette every once in a while. And then I’d get sleepy but I wouldn’t be able to motivate myself to stand up and go to bed until I was more awake at which point I got more engaged in whatever it was that I was doing.

When I quit smoking I started hanging out in bed and drawing or reading fanfic or whatever and the magical thing is that when I’m tired I can just put my phone or my notebook down and go to sleep. I even keep my meds and my phone charger and a bottle of water on my headboard so I don’t have to stand up and take my pills I just put my stuff down and go to sleep. This has taken me from an average bedtime of 4-5am to an average bedtime of 1-3am and sometimes I can even go to sleep at midnight if I’m tired enough. THIS IS MAGICAL AND HAS LITERALLY NEVER HAPPENED FOR ME BEFORE. I still have “whoops, got into this book and stayed awake until 5 am” nights once every couple of months but it is so much better than when that used to happen two or three times a week.

(that is, of course, with a work start time of 9am; left to my own devices or working a schedule I choose I’m more likely to be in bed by 7am and getting up at 2pm.)

D) Hey you know how they tell you to stop drinking caffeine at like, 5pm or some ridiculous bullshit? That made everything immeasurably worse for me. Honestly see if having a cup of coffee around bedtime helps.

E) TAKE FUCKING NAPS

Because here’s the deal, if you can’t get around the terrible and cruel dayperson’s schedule requirements then you’re going to just have to get used to dealing with less sleep and that is *terrible* for you but you can make it slightly less terrible by taking an afternoon or a just-off-work nap. And sometimes the nap will hit you really hard and you’ll sleep for like ten hours and then you’ll probably be awake too early but what, you probably didn’t even have enough of a sleep schedule to be worried about ruining it.

F) If you’ve got the hamster wheel going try to think about things that require your focus but that are kind of boring. I tend to either multiply by 3s until I can’t keep track and then start over OR I focus on feeling the pulse in every part of my body from my toes to my scalp and back down until I’m asleep.

And I’m sorry because you’ve probably heard that and heard “well you could do it if you really wanted to” and that fucking blows and I wish nobody had been such a fucking asshole to you.

Not everybody sleeps on the same schedule and it’s not your fault if your brain is wired to a schedule that society thinks is wrong BUT you probably do need to recognize that society is going to do its very best to fuck you over and if you can start planning now for the kind of work that lets you set your own schedule you might want to do so. That is the kind of benefit that is on par with health insurance and 401K matching. If one business is letting you sleep at your normal schedule and another business needs you in at 8AM but pays 10K more I’ve gotta tell you that the sleep schedule that makes you feel best and not getting yelled at by your boss over lateness because you overslept AGAIN is probably worth ten thousand dollars.

I’m gonna stop you right there, chief. I don’t “plan” to “go to bed” I get distracted inking and suddenly it’s 2am and I need to eat dinner.

Also no, my biggest problem is a delayed sleep phase, which is what a lot of people in this thread are talking about and which may be a problem for a significant percentage of people with ADHD.

Hi I’m a person with ADHD and I fall asleep in bed with my phone in my hand and a cup of coffee on my nightstand hours earlier than I used to be able to because I broke the perfectionist anxiety cycle and learned to hang out places where it would be easy to fall asleep.

For 9 years I’ve also worked a job with a 9-5 schedule that is nearly as brutal on me as my 7-4 high school schedule was and I desperately miss my coffee shop job that paid a quarter as much because I was actually able to sleep on my natural sleep cycle for once in my life.

I’m glad you found something that works for you but if “remembering to take a pill at the same time every day” or “having a set schedule” or “hearing alarms” is part of your plan for sleep management it is not a workable plan for me.

What works for me is getting around 5-6 hours of sleep a night and napping occasionally.

I’m not saying “UwU go get a different job” I’m saying “if you have the ability to plan on looking for work that allows you to set your own schedule you should understand that a benefit like that can be literally life saving if you’ve got major delayed sleep issues”

If you have a sleep phase delay and you think you’re going to be able to successfully bully yourself into getting up at 645 every day to be a kindergarten teacher I’ve got to say that you are probably underestimating how much this kind of thing can impact your life and health and if you’re in the beginning stages of your life journey I’d recommend maybe exploring other career options.

But after getting treated for insomnia and told to do light therapy and mediation techniques for 20 years I can tell you that what works for me is stable caffeine consumption, being able to just set stuff down and go to sleep when I’m tired, remembering that a little sleep is better than no sleep, and occasional naps.

You ever been to the delayed sleep phase subreddit? That, my friends, is a depressing place.

But, as depressing as it is, it’s also liberating.

I’m really, really happy that avoiding your phone after dark works for you but this was a problem for me before cell phones and home PCs were a thing I had in my life. Avoiding blue light and keeping distractions out of my room isn’t going to work for me. Been there, done that, tried the melatonin.

You say “reading is any option” to calm you down for sleep as though a) I haven’t just said that one of my remaining sleep issues is staying up because I got sucked into a book and b) sleep professionals don’t tell you not to read at bedtime. They fucking do. I’ve heard them. “You should be relaxing and settling your mind, not looking for distractions or simulation.”

I’m not going to tell people to take melatonin or wear sleep masks or stop exercising 3 hours before bedtime because there seems to be some confusion about chronic vs. episodic sleep conditions and how they are treated.

I’m describing pallative care for an incurable issue that I’ve had professionally treated since Bill Clinton was president. You are describing a sleep schedule that can apparently be resolved by half a dose of melatonin.

So maybe this is less “tips on how to go to bed at a normal person time” and more “tips on how to survive when you don’t sleep like a normal person because of a condition that is fundamentally inseparable from you as a person”

When your sleep is as fucked as mine your choices are to limit harm by getting what sleep you can or improving the sleep you get OR finding a job that lets you be your full nocturnal self.

By managing to roll my sleep schedule back more than 2 hours I’m actually doing *incredibly* well. That is above and beyond what sleep experts expect to achieve for patients with DSPD. A 10pm bedtime is impossible for me and disappointing and disheartening to try to achieve. A 2am bedtime is a vast improvement to my quality of life and has excited and pleased my doctors to the point that my psychiatrist asked me if I had any advice i could share with his other ADHD patients.

AND I DID IT BY LETTING MYSELF FALL ASLEEP WITH MY PHONE IN MY HAND.

Or: how i leaned to stop worrying and love the blue glow.

(I’ve got no advice for parents with children who have normal hours; no idea how you do it.)

They weren’t asking for a *normal* sleep schedule, they were asking for an IMPROVED sleep schedule. You know that perfectionism thing I mentioned? You’re doing that. You’re saying “if you’re not aiming for normal then why even bother.” Don’t Let Perfect Be the Enemy of Good.

Also I am clearly not expecting it to work on everybody else; I say things like “Try X” and “give this a shot” - and I also told you I’m glad you found something that works for you but you’re telling me “just take half a dose of melatonin and train your body to sleep at 12 instead of 2″ like your tips will work for me.

ALSO YES THAT’S WHAT WE’RE SAYING. NO SLEEP THERAPIST RECOMMENDS THESE THINGS BUT THESE THINGS WORK VERY VERY VERY WELL FOR A LOT OF PEOPLE WITH ADHD. WE ARE SAYING “A LOT OF PEOPLE WITH ADHD ARE NOT HELPED BY STANDARD SLEEP ADVICE” so, YES, blue light tricks your brain into thinking it’s still daylight. As it turns out, for a lot of people with ADHD that is WAY less important than doing something until they fall asleep.

We’re going to have  a talk about the disability model of disease and why it’s important not to dismiss someone saying “here are a bunch of tips that worked for me” and a bunch of people saying “WOW, I have that ADHD and that sounds EXACTLY like me.”

So, NO, I am not describing only my problems and I am not going to bed at 2am because my body is used to it, Delayed Sleep Phase Disorder is an actual, studied condition that happens to be present in a MUCH higher percentage of people with ADHD than in the general population.

Look you can do a wikipedia about it:

This is a significant, serious physical condition and most people with this condition have been told, over and over like you’re doing now, that they’re just not trying hard enough or that they’re doing something wrong or that basically it’s their fault for not sleeping right.

And that’s what you’re saying. “It’s your fault for not sleeping right.”

And what I am saying is “A LOT OF PEOPLE WITH ADHD HAVE THIS SERIOUS SLEEP CONDITION THAT CANNOT BE EFFECTIVELY TREATED WITH STANDARD SLEEP HYGIENE AND IT IS VERY IMPORTANT TO FIGURE OUT HOW TO COPE WITH IT IF YOU HAVE IT”

Here, let’s do more Wikipedia:

Rehabilitation for DSPD patients includes acceptance of the condition and choosing a career that allows late sleeping times or running a home business with flexible hours. In a few schools and universities, students with DSPD have been able to arrange to take exams at times of day when their concentration levels may be good.

Patients suffering from SWSD disability should be encouraged to accept the fact that they suffer from a permanent disability, and that their quality of life can only be improved if they are willing to undergo rehabilitation. It is imperative that physicians recognize the medical condition of SWSD disability in their patients and bring it to the notice of the public institutions responsible for vocational and social rehabilitation.

In the United States, the Americans with Disabilities Act requires that employers make reasonable accommodations for employees with sleeping disorders. In the case of DSPD, this may require that the employer accommodate later working hours for jobs normally performed on a “9 to 5” work schedule. The statute defines “disability” as a “physical or mental impairment that substantially limits one or more major life activities”, and Section 12102(2)(a) itemizes sleeping as a “major life activity”.

I’m sorry that you’ve apparently signed a contract and locked yourself in a career that means you’ll never be able to look for any other kind of work than the work that you’re currently doing but *literally* the only advice I gave students was “SEE IF YOU CAN TALK TO A DISABILITY COUNSELOR AT YOUR SCHOOL BECAUSE THIS IS A DISABILITY.”

(I’m also sorry that you seem to legitimately believe that career changes aren’t possible for a lot of people. Like. You are a clever and talented human being who can learn new skills and absorb new information. I believe in you.)

I’m *aware* that students are fucked by this. I think it is WRONG that they are forced to comply with an unnatural-to-them sleep schedule that can cause injury or increase suicidality.

But I’m sitting here saying “If you’ve got a broken spine you probably need to reconsider whether you’re going to be able to work as a barista; lifting things is difficult for people with broken spines and if you have the opportunity to look for a job that doesn’t require lifting or standing constantly it will improve your quality of life and is a significant benefit”

and you’re going “Well SOME people with broken spines don’t have the PRIVILEGE of looking for other work, they should just do what I did for my sprained ankle and wrap their spine in a bandage until it feels better.”

Someone working as a barista with a broken spine is obviously impaired and disabled, they are literally not able to do their work. Somebody with a broken spine working in an office might not seem disabled at all, their injury likely doesn’t have any impact on their work. Someone who uses a wheelchair might have a lot of trouble living in a building with 10 flights of stairs; that same person is going to have less trouble if they’re living in a building with ramps and elevators.

“Normal” sleeping hours are heavily reinforced by society and having a sleep schedule outside of those hours is pretty heavily punished and definitely ridiculed and dismissed as laziness (like you’re doing now).

But if we accept that some people don’t sleep during “normal” hours and look for ways to accommodate them then everyone benefits.

Also, ADHD is not considered a disability in my country. I don’t get aid or certain accommodations for disability because I have ADHD, so that’s also out of the question. Schools and working places don’t have to give me accommodation unless I struggle super hard in performing, which I unfortunately don’t. So no, I cannot just get disability accommodation when ADHD is not even considered a disability. And the comparison to people wheelchairs and broken spines are just low. You have a “disability” but you’re not impaired physically in any way, and getting a “normal” sleep schedule isn’t impossible with the right measures. Of course someone in a wheel chair cannot be at a construction site, but someone with ADHD can work at one if they get their sleep schedule fixed. And your advice just won’t help that. I, and many others, don’t want to have to choose careers that matches our sleep schedule just because we have ADHD. We want to be able to pursue the career we want regardless, and thus wanting advice on how to make their sleep work. The question was literally SLEEP ADVICE FOR THOSE WHO CANNOT GET A JOB IN THE MIDDLE OF THE DAY, and you just said “don’t get such a job” as if people are able to choose their careers at all times. That’s incredibly tone deaf, and it’s not answering to their question. You just answered with what works for you. And even if many other with ADHD can relate to you doesn’t mean all of us will. Your advice won’t work for me, and I said that and proposed things that works better for me so people can try it and see if it works for them. And you just got all defensive just because I said your tips doesn’t work or is applicable to the question that’s asked.

I’m so glad you brought up the broken spine thing and called it low because the barista with the broken spine was me, and LITERALLY working as a barista with a broken spine was less of an issue than trying to treat DSPD.

It sucks that you live in a country that doesn’t recognize ADHD as a disability because it SUPER DUPER is but I never told you to do what works for me, I told you to stop telling people that the only thing that works is a bunch of things that they’ve already tried that do not work and to stop dismissing people saying “it is impossible for me to go to sleep before 3am even with good sleep hygiene; what do I do?”

And my response to someone saying “sleeping till noon isn’t an option” was to provide a bunch of tips that help me to not sleep till noon PAIRED with the recommendation that people who have this problem might want to consider other options.

You keep saying “some of us WANT” a normal sleep schedule and “some of us WANT” to work in daytime careers and, look, I wanted to continue working as a barista but I could not physically do it.

I am telling you: Many people who have ADHD also have a comorbid issue called Delayed Sleep Phase Disorder, many people with ADHD are not aware of that and will try unsuccessfully, for decades, with medical supervision, to create a “normal” sleep schedule but they are physically incapable of doing so without external monitoring and live-in aids; they are physically prevented from doing so by chemicals in their brains and no amount of wishing they were able to sleep normally will make it happen. People who attempt to treat this without recognizing that it is incurable and harm reduction is the best they can hope for frequently get extremely depressed or become reliant on addictive sleep aids.

You are saying “nuh-uh, that isn’t real you’re just lazy, you could fix it if you really wanted to” and I’m telling you that is exactly what NT folks tell ADHD folks.

I, and many others, don’t want to have to choose careers that matches our sleep schedule just because we have ADHD. We want to be able to pursue the career we want regardless, and thus wanting advice on how to make their sleep work.

I’m sure you don’t want to have to choose careers that don’t have a lot of task switching, don’t require uninterrupted focus on boring things, or provide a constant high level of stimulation either but those are things that are important to consider when you’re looking for work because it’s important to consider the symptoms of your condition when you’re looking for work.

Something that requires high attention to detail is not going to be a good match for people with inattentive ADHD. Something that requires long stretches of repetitive, boring actions is not going to be a good match for people with hyperactive ADHD. Something that requires you to wake up early every day is not going to be a good match for ADHD folks with DSPD.

Them’s the breaks, kid. Sometimes disabilities take your choices away.

“Look for work that it suited to the symptoms of your disability” is completely uncontroversial advice that nonetheless is not frequently offered to people with ADHD and its attendant sleep issues.

The head psychologist said “Your goal this week should be letting in alternative theories to your paranoia. It isn’t likely anyone is following you.” I said “What do you mean? How can I trust someone else’s perspective over my own, especially when that someone is white?” Another person spoke up, suggested increasing my anti-psychotics.

I looked around the room at the other patients and the professionals in group with me. I was the only Black person there. 

I’m mentally ill, and sometimes I’m paranoid, and sometimes I’m delusional. 

I’m Black, and I’m more likely to be followed around by security, or have negative interactions with the police. The racism in this world is real, and it can affect me.

I’m mentally ill, and sometimes I have persecutory delusions, and there wasn’t any drugs in my orange juice or bugs living in my arms even though I was convinced there were.

I’m Black, and I’m mentally ill. And that intersection has never been acknowledged online or in therapy. That intersection makes us more vulnerable to abuse, domestic violence, and police brutality. 

Black schizo-spec people face challenges that others don’t. We are more likely to be be labeled as dangerous and violent and be disbelieved when we share about how racism has impacted our lives, among many other things. That makes it harder for me to trust others- not to mention that difficulty trusting others is a symptom.

Was I being followed that day? I wish I had an answer, but I don’t know. Maybe I was, maybe I wasn’t. But that isn’t the point. 

A simple search will tell you that schizophrenia is more readily diagnosed in Black patients than in white (source), and some say it is overdiagnosed.

But where are the positivity posts for Black people with stigmatizing disorders?

 Where is the positivity for the Black schizo-spec people trying to figure out what level of fear and suspicion towards the police is reasonable and what is a symptom? Where is the positivity for Black schizo-spec people who have everything blamed on their diagnosis while their other mental health problems get ignored? Where’s the positivity for Black schizo-spec people who distrust the medical professionals they deal with, who have ugly symptoms, who are pigeonholed as dangerous?

We have died because we are Black and schizo-spec. Remember those of us who have been murdered or attacked.

Keith Vidal

Dontre Hamilton

Khaleel Thompson

Darren Rainey

Jason Harrison

Deborah Danner

And? Don’t forget to include us in your activism while we are living. 

I was

Always polite

Never acted without permission

Never spoke out of turn

Always did what I was told

And it’s shitty that I was considered mature and praised for those things, and all of those characteristics have translated into me being an immature, “bad adult.”

Now I

Have difficulty making a keeping friends

Can’t act without permission/am dependent on others for direction

Am terrible at communicating

Have no agency/personal compass

Yaaas fam! You get that micronutrient! <3

Before you think I’m advocating Vitamins Cure Everything, I took magnesium based on a counselor’s recommendation and it did jack, and iron supplements actively contributed to the return of my ulcer. (Which sucks, cause I’m still iron-deficient.) I’ve also been recommended fish oil, zinc, potassium, calcium, vitamin C, and every other B vitamin by various people, qualified and not, but after research I decided they probably wouldn’t help and/or I already consume plenty in my diet, so I don’t choose to supplement those micronutrients.

It’s also important to note that some vitamin supplements can also interact with medications. Off the top of my head, high doses of vit C (1000mg) interact badly with ADHD meds, specifically stimulants, and need to be taken either an hour before ADHD meds or an hour after, otherwise it can neutralize your Ritalin (or whatever other drug you are on). In that same vein, antihistamine and cold and flu meds that contain decongestants can mess with your ADHD meds, and give you a weird buzzy anxiety high which some folks find really distressing, so jot that down real quick.

the deal is that i’ve created an enormous amount of content on this blog (see the archives), including an 8 week body image curriculum, and i continue to do so, even thru cancer. it would be really helpful to have some supplemental income while i’m paying for my master of social work, which i’m pursuing in order to bring radical, liberatory body politics and eating disorder expertise to community mental health, as a professional. (i already do this as a peer support facilitator and organizer.) 

so it’s open enrollment time, which means you need to pick a health insurance plan from the exchanges!  it can be daunting as shit, for sure, especially if you don’t live in the filthy weeds that are the business side of our garbage health care industry like yours truly does.  

so!  here’s a quick rundown of some of the vocabulary:

premiums: this is what you pay per month for the glorious honor of having insurance coverage.  it does not count towards your deductible or out of pocket maximum.  depending on your income, you may be eligible for a subsidy or other financial assistance to make your premiums more affordable.  

deductible: this is how much in health care costs you have to pay before your insurance starts really kicking in.  for example, my insurance through work had a $1,500 deductible, so the copays and coinsurances and lab costs that i had to pay early in the year, before i had another surgery, were fully my responsibility until i’d paid out $1,500; after that, my insurance started covering a flat 80% of everything, including copays.  basically, the deductible is how many actual dollars you have to pay out for medical costs before your insurance takes over.  

if you’re someone who goes to the doctor a lot, like me, you’re probably going to want a plan with a lower deductible, which will have a higher premium; however, in the long run, you’ll come out more ahead with a high premium/lower deductible.

on the flip side, if you’re generally healthy and just need an annual checkup, flu shot, ob-gyn annual, etc., then you probably want a lower premium/higher deductible plan.

out of pocket maximum: this is the cap on how much– aside from premiums– you should have to pay in health care costs in a year.  most plans on the exchanges right now have a high deductible and higher OOP max.  

network: this is the collection of providers (doctors, surgeons, urgent care facilities, imaging facilities, etc.– any clinical medical care or medical service provider) that are contracted with the insurance plan.  this means that they have an agreement with the plan to accept payment from that plan for services.  you can still see out of network providers, but your plan may have a separate out of network deductible that is higher and that you pay separately from your main deductible (for example, if your plan deductible if $5,000, you might have a separate out of network deductible of $5,500; even if you’ve already paid of $4,950 of your regular deductible, if you see an out of network doctor, you’re going to have to hit the $5,500 deductible in copays and whatnot before the insurance covers them fully).  

most insurers have their own website that identifies what doctors are in network.  sometimes you can access this without being on the plan already, sometimes you can’t.  a decent, though inconsistent, workaround is to use zocdoc, where you can put in the plan type you’re thinking about switching to and see what doctors are in network.  the drawback to zocdoc is that contract status is doctor-reported, so if the doctor’s office in question is slow to update, the records may be out of date.  

another option to determine network availability for a specific doctor or care group is, if you’re okay hopping on the phone, to just give them a call and ask outright if they’re going to be in network for plan ___ in 2018.  

if you’re like me and hate talking on the phone, the other option is that large provider groups, and a good number of smaller groups and individual providers, will often also have accepted insurances on their websites.  in my experience almost all providers who have privileges at a hospital will have that listed on their pages on the hospital’s website.

copay: this is a flat fee you pay to a provider when you see them.  it’s like the cover charge at a bar: you pay $20 to get in the door, and then you get the dubious honor of also paying for the drinks and food you buy inside on top of that.  

coinsurance: this is a percentage charge for seeing a provider.  instead of a $20 copay for the cost of the visit to see doctor bob, you’re charged, say, 10% of the total cost of all charges associated with you visit to see doctor bob.  if you don’t get much done, this may only like $10; if you get a full metabolic panel run and a bunch of xrays, it might be $100.  

and the plan types:

hmo: health management organization.  the concept of this plan is that you have a pcp (primary care provider - your regular doctor) who functions as your primary point of contact for all medical care.  if you want to see a non-pcp doctor, you have to first see your pcp, who will write you a referral to see said specialist.  specialists include orthopedists, physical therapists, neurologists, ob-gyns,  etc. - any provider who isn’t your pcp, basically.  

hmos tend to be cheaper for you, the beneficiary

this is because of how they’re paid out: pcp doctors receive a capitation (aka, a set flat amount) payment from the insurer for each beneficiary (you) who has them as a pcp.  

so, if i’m a primary care doc and i have 200 blue cross hmo patients and i get $100 per patient, i get $20,000 from blue cross, ostensibly for the cost of care provided, but the provider keeps all $20,000 even if they only end up incurring $15,000 in costs.  the downside of this for you as a patient is that this encourages pcps to get a lot of people to sign up as their patients, and then to see them as little as possible/push them out to specialists for actual care, as this lowers their costs and increases their revenues.  

you may end up feeling like you’re going in circles trying to get actual care because you’re getting pushed from one doctor to another.

note: hmo plans sometimes do not cover out of network providers at all.

ppo: preferred provider organization.  this plan is a free for all: if they’re in network, you can go to whomever you want.  they tend to be a bit pricier (almost always on premiums, 50/50 on deductibles) than hmo plans, but you’re basically paying for ease of access.  you can make an appointment directly with any specialist you so choose.  these plans are ideal for people like me, since i have to see orthopedists and hematologists and physical therapists pretty regularly, and going through a pcp for each of those would be a pain.  

you’ll tend to have relatively low copays within the network and higher ones outside of it

unlike some hmo plans, most ppo plans will provide coverage for out of network providers, just at a less favorable rate

epo: exclusive provider organization. this is the bastard child of the hmo and ppo and is also an increasingly common option on most of the exchanges.  like a ppo, no pcp or referrals are provided; however, the network tends to be narrower and you have less choice of in-network providers and, crucially, they don’t tend to cover any out of network providers except for emergencies 

important note: the classification of “emergency” isn’t just “emergency situation”, but generally is limited to a proven medical emergency in which you go to an actual emergency room or emergency department.  

insurers will frequently challenge ER/ED bills to confirm medical necessity because– 

in their defense, since they’re meant to cover almost the entirety of emergency bills and also because one of the quantifiable measures of success in moving to value-based care that the ACA established is lowering avoidable ER/ED admissions

–they don’t want to encourage people to go the ER/ED for just anything

high deductible/catastrophic: these are exactly what they sound like– plans for healthy young people who are pretty much only going to wind up with medical costs if something terrible and, well, catastrophic, like a car accident, happens.  they have low premiums and very high deductibles (often approaching ~$10,000).  these are only available to people under the age of thirty, because clearly as soon as you turn thirty you must turn into a total drain on all healthcare resources :|

so what does all of this boil down to for you and your enrollment?

start by figuring out what financial help you’re eligible for!  the exchanges generally have an option at the front end of the process for you to identify your annual income and number of dependents on your plan.  this will let you know if you’re eligible for a subsidy or other financial help, and, if so, how much; you should also have an option when searching through plans on the exchanges to input estimated financial help, which will adjust the premiums in the search engine.  

after that, start digging into the individual plan options.  every exchange plan should provide a summary of benefits and coverage.  it’ll be a pdf and will look like this:

that red circle in the top right there? that’s where you can identify what type of plan you’re looking at.  the first page in the summary of benefits will always look the same– it’s the basic overview of the costs and definitions.

this document will also list excluded services.  it’ll generally be somewhere in the middle/back half of the document and will have a clear header like this:

for me, this is the first thing i look for after verifying premium and deductible amounts.  as the above picture indicates, you can find more information in the plan documents.  these aren’t always directly linked to on the exchange website, but you can generally find them on the insurance providers website.  these will be a lot more detailed and can be anywhere between twenty and 200 pages.  ctrl + f your heart out: as frustrating and complicated as insurers can be, they can’t actually fail to disclose if they, for example, don’t cover all forms of contraceptives.  they’ll disclose it in the plan documents, even if they don’t, unfortunately, have to be clear and up front about it.

NOTE: MINIMUM VALUE STANDARDS

towards the end of the summary of benefits document will be a page that looks like this:

minimum value standards roughs out to basically meaning that at least 60% of all medical charges are covered.  if the plan you’re on does not meet minimum value standards, you might be able to get a tax credit to help you buy another marketplace plan.  always check for this verification when you’re researching plans.

what does all of this shit mean? 

it means start here and then find your state’s exchange from there.  the garbage carrot in chief established “maintenance times” on this website throughout the open enrollment period (sunday afternoons, i believe), so schedule around that.  sit down on a monday or wednesday or saturday with some snacks and a cup of your favorite beer/wine/tea/whathaveyou and crank up some good music to jam to and do some research:

start with figuring out what you can afford monthly and if something terrible happens and you have to cover ER and/or surgery bills

if you have a specific doctor you want to stay with, figure out which insurances they’ll be accepting

check for coverage info in the summary of benefits documents and, if you want more detail, in the plan documents

narrow it down to a few and compare the prices

take a break and have a cookie, you deserve it at this point

pick a plan!  if you’re not feeling super certain about it, go for a walk, do some laundry, pet your cat– just take a break, walk away, come back to it with fresh eyes.  this is a big deal, so you don’t want to wear your brain out and give yourself a headache and then just pick one at random because you have eye strain and want to be done.  open enrollment goes until december 15, so don’t rush yourself.

sign up for your plan

have another cookie and pat yourself on the back, because you just signed up for health insurance for 2018!

now take a nap because that was fucking exhausting and you deserve it

as always, i’m here for any questions you might have!  

there will be basically zero advertising for it this year, bc of the current administration and also bc alex azar is a shithead, so.  put it in your calendar so you don’t forget, expect them to roll out another maintenance schedule on the website that will fuck with weekends and usual enrollment times, and get started early this year.  

i’ll also make a more detailed addition later, but be really careful looking at what the plans offer. there are shitty junk plans allowed on the marketplaces now so don’t assume that just because they’re on an aca state exchange that they’re good, or even decent coverage. i know health insurance is expensive and overwhelming to look at, but there are affordable, decent plans in most marketplaces, even if you have to dig for them.

Changing Place toilets include along side an accessible toilet: an adult sized, height adjustable changing bench; a tracking hoist (or mobility hoist); adequate space for the disabled person and at least 2 carers along with equipment; a centrally placed toilet with room on BOTH sides; a privacy screen; non-slip floors; wide waste bin for pads; tear off paper for bench cover; and A DANGLING emergency pull cord.

And that’s just the basics for Changing Place toilets!

I am in the US (Michigan) and our initiative for accessible bathrooms was modeled after the UK Changing-Places Campaign. I have been working with the advocacy group in my local area/state. 

1. if there are any side effects you should look out for (you would think they would tell you but half the time they don’t. ugh.)

2. if there are any interactions with any other medications you are taking (even OTC meds)

3. if there are any foods or drinks you shouldn’t eat/drink around the time you are taking the medication

4. if it should be taken with food (and how much food, a few crackers, or a full meal)

5. how exact you should be with the time you take the medication

6. if you skip a dose should you wait until your next dose or take the pill as soon as you realize you’ve forgotten it

7. if there is an alternative medicine to try next if this medication doesn’t work for you or gives you bad side effects

1) If you earn less than a certain amount per month (or meet certain other requirements) you are eligible for MediCaid, which essentially is FREE healthcare that pays for EVERYTHING–including 100% of almost all medications and all doctor’s visits with no copays as long as you stay in network. Find out about your MediCaid services in your state here or apply here. MediCaid absolutely covers all trans-related procedures. I am on MediCaid and have HRT for free right now. If for whatever reason your claim gets denied, your doctor can appeal for you. Mine was appealed and I got HRT (I was denied at first because I use the testosterone patch which is more expensive than injections). If there’s a bigger issue, see #2 for more info.

2) BY LAW your insurance must cover your trans-related care, no MATTER WHAT insurance you have. It doesn’t matter what company is providing your insurance, whether you get it through your job, through the government, or your own spending. As long as you are insured BY LAW it must be covered. See here for information on appealing denials for trans-related care which amounts to DISCRIMINATION.

3) If you are not insured GET INSURED. Apply for Obamacare before renewal period ends. If you earn below the threshold for MediCaid you should be automatically entered into the applications for MediCaid (at least that’s how it works for me in California). But you can also apply to Medi-Caid directly 

4) If you are uninsured or being denied care, doing the above takes time. In the meantime, seek out trans and gender clinics in your area. Some may be sliding scale and made to be affordable for low-income, uninsured people. They may also be able to help you through the process of getting insured or finding affordable care.

From a surgical nurse and certified CPR teacher:

Please pause for 2 minutes and read this:

1. Let’s say it’s 7.25pm and you’re going home (alone of course) after an unusually hard day on the job.

2. You’re really tired, upset and frustrated.

3 Suddenly you start experiencing severe pain in your chest that starts to drag out into your arm and up in to your jaw. You are only about five km from the hospital nearest your home.

4. Unfortunately you don’t know if you’ll be able to make it that far.

5. You have been trained in CPR, but the guy who taught the course did not tell you how to perform it on yourself.

6. HOW TO SURVIVE A HEART ATTACK WHEN ALONE? Since many people are alone when they suffer a heart attack without help, the person whose heart is beating improperly and who begins to feel faint, has only about 10 seconds left before losing consciousness.

7. However, these victims can help themselves by coughing repeatedly and very vigorously. A deep breath should be taken before each cough, and the cough must be deep and prolonged, as when producing sputum from deep inside the chest. A breath and a cough must be repeated about every two seconds without let-up until help arrives, or until the heart is felt to be beating normally again.

8. Deep breaths get oxygen into the lungs and coughing movements squeeze the heart and keep the blood circulating. The squeezing pressure on the heart also helps it regain normal rhythm. In this way, heart attack victims can get to a hospital.

9. Tell as many other people as possible about this. It could save their lives!!

10. A cardiologist says If everyone who gets this mail kindly sends it to 10 people, you can bet that we’ll save at least one life.

11. Rather than sending jokes, please... contribute by forwarding this mail which can save a person’s life.

12. If this message comes around you... more than once… please don’t get irritated... You should instead, be happy that you have many friends who care about you & keeps reminding you how to deal with a Heart attack.

In my case, one of the biggest reasons was my communication difficulties. 

I struggle with people, so having to meet a stranger causes a lot of stress and anxiety, being expected to communicate wholly face-to-face with that stranger, the lay-out of the rooms that therapies are usually delivered in (chairs facing each other, no desk in between to block the other person). I don’t think I have ever managed to communicate anything of importance to any professional, and usually the more significant information is provided by whoever is accompanying me (so any sessions I ‘go alone’ tend to seem like a waste of time). When I heard that it wasn’t always very helpful for autistic people in general, I can’t recall whether there was any explanation as to why this was, and if so what it was! 

From the NHS site:

Cognitive behavioural therapy (CBT) is a talking therapy that can help you manage your problems by changing the way you think and behave.It’s most commonly used to treat anxiety and depression, but can be useful for other mental and physical health problems.

So for me, that in itself is strike one! Talking therapies aren’t always accessible for people, and it can be difficult for various reasons to get around this. For example, needing an interpreter or facilitator to support, or struggling with AAC in pressured/stressful situations.

How CBT worksCBT is based on the concept that your thoughts, feelings, physical sensations and actions are interconnected, and that negative thoughts and feelings can trap you in a vicious cycle.

Many autistic people can struggle to recognise how they are feeling, physically and emotionally, or might struggle to recall how they felt during a situation prior to the therapy session, and/or to communicate their feelings, which will likely hinder the process.   Remembering what advice was given, recognising when to apply it, being able to do so under other stressors (during times of sensory overload, for example, or alongside trying to process a social interaction) or whilst combating executive dysfunction, etc… (and then having to report back to the therapist during your next session) are all other challenges, are all things that might make it especially hard for autistic people. Here are the pros and cons as listed on the NHS website:

Pros and cons of CBT

Cognitive behavioural therapy (CBT) can be as effective as medicine in treating some mental health problems, but it may not be successful or suitable for everyone.

Some of the advantages of CBT include:

it may be helpful in cases where medicine alone has not worked

it can be completed in a relatively short period of time compared with other talking therapies

the highly structured nature of CBT means it can be provided in different formats, including in groups, self-help books and apps (you can find mental health apps and tools in the NHS apps library)

it teaches you useful and practical strategies that can be used in everyday life, even after the treatment has finished

Some of the disadvantages of CBT to consider include:

you need to commit yourself to the process to get the most from it – a therapist can help and advise you, but they need your co-operation

attending regular CBT sessions and carrying out any extra work between sessions can take up a lot of your time

it may not be suitable for people with more complex mental health needs or learning difficulties, as it requires structured sessions

it involves confronting your emotions and anxieties – you may experience initial periods where you’re anxious or emotionally uncomfortable

it focuses on the person’s capacity to change themselves (their thoughts, feelings and behaviours) – this does not address any wider problems in systems or families that often have a significant impact on someone’s health and wellbeing

Some critics also argue that because CBT only addresses current problems and focuses on specific issues, it does not address the possible underlying causes of mental health conditions, such as an unhappy childhood.

Oh, what a wonderful world we live in that most folk don’t know this anymore.

Yes, you can die from regular old iron anemia, and most folks did until we figured out how to do things like test the blood and make iron supplements and blood transplants. You need healthy red blood cells to carry oxygen around the body, without it your organs don’t get enough oxygen, including the brain, and you wind up at high risk for heart attack or stroke.

I almost died from it earlier this year due to profound medical neglect. Well, technically it was hidden pernicious anemia which is a b12 deficiency (cause anemia don’t just mean lack of iron, it means “weak”.) which in turn can lead to an iron deficiency cause your body can’t hold onto iron and folate if you don’t have any b12. Mine was allowed to go unchecked for at least over 5-6 years (my specialist thinks it was closer to 15-20 cause of the level of cell damage I have) cause I was told all my symptoms were “untreated mental health” (spoiler alert: they were not) which meant I was basically running on fumes and not much else until I got new doctors who took one look at me and went “oh holy shit”.

Once pernicious anemia becomes dangerous like mines was, you go on to develop megaloblastic anemia which is when your bone marrow stops producing healthy blood cells and they come out immature and can’t do their job of carrying oxygen around the body. And then if your doctor is shitty enough like all mine were, they will continue to miss all the glaring signs of abnormal blood tests until you develop hemolytic anemia, where your blood just basically starts to self destruct and it can look like cancer.

This is the point you start having all kinds of fun organ problems, your nervous system starts shutting down, and there’s a chance of heart attack and stroke and brain damage, which is where I was at this last May, and the doctor starts telling you fun things like “this is a medical emergency” and “I don’t know how you’re alive”.

This may sound very panic-inducing, and that is not my intent, I just don’t want anyone to ever go through what I had to go through because people weren’t informed and their doctors don’t bother to check for these things, especially if you are female.

So if you’ve had lifelong problems with iron anemia and no one can tell you why? Ask to get your b12 checked with a basic b12 blood test.

There’s a chance that during regular testing no one thought to check for a b12 deficiency if your folate/folic acid levels are within the normal range. The problem is folic acid is added into a lot of grains, so lots of people test fine so then doctors tell you your health problems are either imagined or the result of needing to make “lifestyle” changes when actually you might have a hidden condition that used to be referred to as “the cancer of the 1800s” cause until we figured out how to manufacture b12, the lack of it was killing a lot of folks.

Also if you’re on medications for acid reflux/GERD for longer than a month? You’re at risk of pernicious anemia cause those meds stop the body from absorbing b12. So get y’all levels checked. Especially if you were diagnosed with CFS/ME and fibromyalgia and you don’t know if you’ve had your b12 tested.

Like, hi, I almost died two nights ago because of POTS; I’m still recovering.

We really need to start talking about the dangers of POTS and little access to treatment for it; we can literally die.

How? Hypovolemic shock. Same thing that happens if you’ve lost a lot of blood.

POTS can cause low blood volume due to lack of fluids, which if it gets too low, can send you into shock, which can kill you. You only need to lose 20% / 1/5th fluids for this to happen.

To combat this, you really need an infusion. But no one ever talks about this??

This needs to fucking change; we as a community need to be more educated on POTS and what it can actually cause.

bc yes, stand-up-pass-out, ha ha, but also ??? death??? And it’s never talked about in POTS spaces?? Like, infusions are mentioned and stuff, but rarely why. Rarely that it’s more than just POTS can make you feel like utter shit.

We need to start talking about it, and the more we talk about it, the more it forces the hand of the medical world to acknowledge our existence and our needs.

i say for disabled people bc i can't leave my house for shit most of the time, certainly not for clothes shopping. and online shopping is exhausting too, risky and returns are a hassle. plus i just don't have the skill or interest in learning how to dress well, but i do still want to look good.

clothing is so complicated for me for so many reasons and this fixes all of them, pretty much. i was very skeptical at first about their ability to cater to my gnc queer ass but I've been telling them what i want and they've been listening. getting some really excellent butch clothing.

AND it is all super comfortable?? looks good, fits great, AND comfortable? not something I can achieve by myself even more energy.

the items are a bit more expensive than i'd usually want to pay, but not crazily so. and as long as you keep at least one item per box, the $20 styling fee goes towards your purchase. i've never had to return a whole box. shipping and returns are free. they say you have three days to decide what you want to return but in practice they're very flexible.

Follow Eadie, the EDS Zebra as she finds her family and her dazzle.

Image Description: 

Image One: A inked Zebra face and a unicorn face look at each other. Black text on a white background under the zebra reads “Hi, my name is Mikayla, I’m an Aussie zebra author who’s been known by many… many names. This is my best friend, an arrow points to the unicorn. Black text on a white background beneath the unicorn reads ‘Hi, I’m Claudia, Charlie to few, Chicken to many. I’m an Australian artist and illustrator. She (an arrow points to the zebra head) calls me a unicorn.  Black centred text between them reads ‘Together we are Blank Expectations. We hope you love this book as much as we’ve loved making it.’

Image Two: A close up of a closed watercolour zebra eye, black text within white stripe reads ‘The little striped horse heard a sound. She heard it clearly, the thunder of hoofbeats wanting to be found.’

Image Three: Black text heading on a white background read ‘All is revealed.’

Below is a cover image by @blankexpectations. The cover reads in a black font, ‘The Littlest Zebra.’ Below, are a line of colourful zebra butts, from left to right; a lime green zebra butt, a purple zebra butt in a wheelchair, a teal zebra butt, a yellow zebra butt and a blue zebra butt.’ A caption written by @mikaylathespoonless on Instagram reads ‘I’m so incredibly proud to announce The Littlest Zebra, a picture book…’

Image Four: Blankexpectations.com.au

A title, ‘Black Expectations’

A menu, with ‘Welcome to our dazzle.’ ‘Buy the book’ and ‘Shop the look’ options displayed.