Hello disabled comrades! This week, I am feeling very relieved for the ceasefire in Gaza and the release of Palestinian hostages. I hope we are all doing okay. If you’re just surviving, barely making it through — I see you and I’m proud of you; and I hope this week brings you a little joy.
As always, we ask that in order to participate in the weekly megathread, one self-identifies as some form of disabled, which is broadly defined in the community sidebar:
“Disability” is an umbrella term which encompasses physical disabilities, emotional/psychiatric disabilities, neurodivergence, intellectual/developmental disabilities, sensory disabilities, invisible disabilities, and more. You do not have to have an official diagnosis to consider yourself disabled.
Mask up, love one another, and stay alive for one more week.
THE FOLLOWING POST IS A BIG OL’ VENT FEST.
I have a 10 minute consultation with a psychiatrist who specializes in ADHD on Monday. I think I’ve had undiagnosed ADHD my entire life. It’s gotten to where I can barely function anymore.
I’ve had two psychiatrists in the past. They only treated me for depression. That’s partially on me. I had a suspicion I might have ADHD back then but I wanted to rule out depression as the root cause first. That was a mistake. Every appointment after that lead to the same solution: more or different SSRIs (with an NDRI). Two years, and multiple appointments, even after my therapist told me he thinks I have ADHD, and the psychiatrists continued to focus on SSRIs or other alternatives.
My suggested I have sleep apnea, and I do. Treatment has been a gamechanger. I’m grateful for that.
Nonetheless, I resent the fact that the hurdles for ADHD treatment are so high that it seems impossible for an actually inflicted person to clear them, whereas the hurdles for SSRIs are extremely low. SSRIs, like ADHD medication, have many side effects and are difficult to wean off of. It may not be an addiction like alcoholism but people can form life-altering chemical dependencies on SSRIs. Still, they’re handed out like candy, whereas the bar for ADHD treatment is so high that it seems like only a highly motivated drug user could clear it.
No shade to my drug users out there. I don’t care if someone uses drugs or not.
My point is that doctors and psychiatrists pretend that their reluctance to even screen me for ADHD is neutral, medical and scientific, whereas I suspect there is a social and moral element at play here: the unspoken suspicion that I’m seeking drugs for recreational use or resale. I’ve been frank with them about my drug use before. I’ve used psychedelics plenty, I have an on-again and off-again relationship with cannabis that is not altogether healthy, and I engaged in regular binge drinking through my teens and twenties. I tried cocaine once and didn’t like it. I barely touch alcohol anymore, and mostly keep my use to weddings and funerals. My first 2-3 years after starting SSRIs, I didn’t touch cannabis once. It wasn’t until about a year ago that I found my dead stepdad’s stash and started smoking weed again.
BTW: weed on SSRIs is great. I’m a naturally outgoing and extroverted person, but cannabis gives me crushing social anxiety. I can’t function socially on weed. That’s totally different on SSRIs. SSRIs make it so I can smoke weed and remain unflappable. That’s the best part.
My depression symptoms have all but disappeared now that my sleep apnea has been treated. I still have all the classic ADHD symptoms though.
My last appointment with my psychiatrist, I described my obligation avoidance and executive dysfunction. He treated these like they were energy related, and said that low energy isn’t an ADHD symptom. I felt crushed.
I’ve had a lot of other health issues and problems with doctors in recent years. I think being honest about my history of drug use was a mistake. Those drugs are all fairly harmless in my opinion, but I have this suspicion that any time I come to a doctor with complaints about pain, they think I’m only interested in opiates. One of the last doctors I saw was so rude, condescending and dismissive that I can’t think of any other explanation.
I have so much more to complain about. I lost my job last year because the doctor refused to sign my FMLA paperwork. My stepdad died months prior, and I’d only been on my CPAP for a mont after years of untreated apnea. Anyone who knows about sleep apnea knows that it can take up to a year (even two) to fully recover once treatment has been initiated.
I was in the largest chemical train spill in United States history. 68 tons of chlorine ruptured from a tank and formed a gas cloud that rolled down my street. I was six years old. I saw the chlorine clouds. Trees were bleached for miles around. People and animals died. All of our possessions were left coated in a mysterious white powder that was never identified. I had chemical scarring in my lungs and toxic encephalopathy (swelling of the brain). I can only imagine how my mental and chronic health issues have been impacted by this industrial incident.
I used to do disability care, mostly working as a support provider in care homes for adults with intellectual and developmental disabilities, but also as an in-home care provider for people with spinal cord injuries and central nervous system diseases, so I know my encounters with the medical establishment and systemic ableism are the tip of the iceberg. I have horror stories about the care homes. If you stand up against abuse and ableism in that work environment, you become a pariah to your peers. If it’s welcomed, I’ll likely dump about that here sometime.
I just wanted to let all of that out.
The positive spin on this is that I’m doggedly pursuing treatment now. I have this consultation with a psychiatrist coming up. If they don’t see me, I’ll continue tracking down new ones until one does.
Whelp. The 10-minute consultation ended with the psychiatric nurse practitioner firmly refusing to see me because I don’t have insurance. It didn’t matter that I assured her I had a friend who would pay for everything. She doesn’t take Medicaid anyway.
I reached out to the food bank to request consultation regarding my Medicaid application. I did the same thing at the county clinic. First an email, then a voicemail. All I can do now is wait to hear back from them.
My friend keeps referring her psychiatrist to me. I texted her asking for the information. I also called the county clinic and left a voicemail asking to see a psychiatric nurse practitioner there. Again, it’s a waiting game.
No other psychiatrist will see me without insurance, aside from, perhaps, the ones I used to see who would suggested alternatives to ADHD for more than two years while my life fell apart due to, in part, in my opinion, untreated ADHD.
The Medicaid application process is tortuous. I first tried to re-apply a year ago but they said I needed a case number. I never needed one before. I filled out the form (buried deep in the .gov labyrinth) requesting the case number. I provided them my current address as I had recently been evicted and moved in with my siblings after their father (my stepdad) died. I didn’t hear back for the entire year. When I asked the food bank for assistance with my application, I was told that I wasn’t answering my mail. They were still sending information to my old address. I definitely gave them the new one. I was also told the case number is for my protection. I don’t see why they’re going through so much trouble to protect me from someone applying for Medicaid in my name but whatever. Finally, I’ve been rejected for Medicaid without any provided reason, and I can’t find an option to reapply on the state DPHHS website.
ADHD seems like a relatively common condition with a simple treatment plan but the whole world feels angled against providing me the help I need to be a productive, happy, fulfilled part of my society.
I remember two years ago, asking my current psychiatrist for help with ADHD. He shut me down and suggested we try alternatives for the third time. I walked to the transfer station to catch a bus home. I looked across the street at the court house. All of these unhoused people were there. I felt so depressed, sad and angry. I thought, if I can’t get help, how can they? I remember expressing that to my manager at the library where I worked at the time. She was just like: “Yeah, that’s tough.” This was the same manager who called the cops on unhoused people regularly, and when she tried to get me to wake up unhoused people sleeping on our couches more often, she said, “This doesn’t sound good from a compassionate perspective, but our donors don’t like seeing it.” ‘It’ being ‘people napping on our couches’.
I worked in nonprofits for ten years, and I can say that “this doesn’t sound good from a compassionate perspective, but the donors don’t like seeing it,” is the most concise summary of the nonprofit world I ever encountered: “We would do the humane and productive thing, but then we wouldn’t have money.”
I’ve been thinking about your vent for quite some time and am still at a loss for words. All I can say is that I’m deeply humbled by your persistence and perseverance. Keep fighting, friend. I believe in you!
Thank you. That’s very kind.