The obstacles we have to overcome in order to access care is unacceptable. I’m in the US, please share your experiences if you live elsewhere.
Finding care -service providers, both primary care AND mental/behavioral health, are generally ignorant about neurodivergence in general, and adult neurodivergence, women neurodivergence, non-white neurodivergence, and comorbidity especially. -databases have limited information, much of it boiler plate and suspicious (specializes in ADHD and autism my ass). -providers generally require a phone call (let’s be real, many multiple phone calls) in order to set up an initial appointment instead of everything being coordinated online which you would think would be easier but noooOOOooo. Also no one answers the phone and they will never call you back. If they call you back it will be at the worst time, also calling me is an act of violence against me, I need to emotionally prepare for a phone call, make a script etc. Also I don’t answer unknown numbers and they call back from a different number, then leave a message and then don’t answer when you call back. -if an email is provided, no one ever gets back to you -still often telehealth isn’t offered which is insane -can you speak to them between sessions, text or email them? -do they provide medication management? Will they treat you like a drug abuser every time you request a refill or feel they aren’t helping as much anymore? Do they know about all the different options, the latest research, additional medications that can be used in conjunction? -the next available appointment is 6 months from now -assessments are only performed by a small set of providers. You don’t get the questions beforehand to prepare and they don’t want you to ask clarifying questions(??))???)?)?)??!!). You are forced to make a quick black and white decision for a complex nuanced concept. These decisions are used to judge you and control your access to support and care. -oh yeah there isn’t any support anyway -is this service covered by my health insurance? ¯\(°_o)/¯ if it is, do they do the paperwork? Or will they make you pay and then fill out forms and call your insurance to coordinate reimbursement? ( Real experience I’ve had)
Maintaining Care -if you miss an appointment or want to reschedule too close you’ll be charged
- in person care means dressing, hygiene care, planning, transportation, interacting with strangers -did you remember to fill out the forms and send them in? Or bring them? -remember everything you needed to bring up, have written down notes and remember where you put them or that they exist, remember what what you wrote down means. -are they dismissive? Are they going to judge you? Are they going to understand what you’re saying the way it sounds in your head but never gets translated out of your mouth? -are they aware of all the latest research? Do they understand the nuanced ways comorbidities interact and can obscure symptoms? Do they understand masking? Do they know what questions to ask that you don’t know to think about?
This world is so unforgiving and structured to make our lives harder, it what’s feels like a knife to my chest whenever I have to deal with care providers who gave zero accommodations for the people they servehas if they truly understand nothing about the conditions people are living under. There are so exceedingly few qualified providers, if I want any care at all I have to put up with it.
What did I miss in my rant?
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Once you have ‘care’ you’re at the mercy of your insurance companies that hold up your prior authorization every year (yeah it’s annual and they’ve gotten it for years but somehow always take just enough time for your meds to run out, inducing withdraw.) Don’t forget, somehow, pharmaceutical companies can’t keep up with regular orders and can be ‘out of stock’ indefinitely. Have had a pharmacist say "well we only had enough for 23, is that okay? Lol.
Omg yeah, and if you change jobs you’ll have a month or more where everything is fucked up, none of your providers are covered anymore and they send you on goose chases on the phone for 6 hours only to hang up on you and you have to start over.
My meds currently are 7 days separate due to a shortage I have to either go without for a week or not forget to go back when they finally get it back in stock. I’m signed up for text alerts when the script is filled but I never get any texts, only some bullshit video link that looked sketchy AF where they talked about the risks of stimulants. Thanks cvs.
Did I write this? Especially the part about needing to emotionally prepare for a phone call and needing a script. I can’t deal with phone calls… sorry, find some other way to reach me.
I personally hate having to “allocate bandwidth” to the event ahead of time. Like, I have to clear out all the other stressful things in my life so that this stupid appointment can have my full bandwidth for dealing with its bs. The worst is when the appointment or whatever it is exceeds the amount of bandwidth I allocated to it - like if they want me to come back or follow-up in some way it’s probably just not going to happen because I just do not have the energy resources and capacity for the stress it causes.
Travelling. If you get a good enough hold of your life that you can afford/tolerate the travel, ADHD meds are usually heavily restricted and there tends to be problems if you try to bring your meds with you. ’
The more stories I hear about other’s experiences with health care, the happier I am with my team and that I live in Canada.
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