If you're chronically ill, so much of your wellbeing comes down to individuals. A doctor who believes you, a boss who lets you wfh, a specialist who recognises your symptoms. Systematically you're doomed, and u just have to hope your path crosses with people who get it. #NEISvoid
The fucked thing is that people "getting it" is determined by things outside of your control. PoC are less likely to be believed by drs, and industries like hospitality etc, where your physical wellbeing is key to the completion of your work, are unlikely to be supportive.
This isn't really a thought-out tweet, I'm just reflecting on how much of me being okay is due to individuals who advocated for me, and how much of that advocacy is due to me being a white women with a Masters degree, in a "professional" job. And even still, it's been so hard.
Just feels like society is woefully ill-equipped to take care of anyone going through health distress that isn't acute. It sucks.
P.S. these ramblings are based on my experiences as a Pākehā in Aotearoa New Zealand- no doubt your experiences vary based on your local context.
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Me: I can't be autistic, I don't have any social difficulties
Also me: Avoids any social situation where the rules are unclear, writes down scripts for phone calls, asks a billion questions in conversations to avoid losing control, can only unmask with other ND people
Me: I can't be autistic, I don't have any sensory issues
Also me: wants to throw up at the thought of dry paint or clay on my hands, can't walk on dusty concrete, feels sick from wearing tight clothing
Me: I can't be autistic, I don't care about things changing
Also me: Eats the same thing for breakfast and snacks every day, has to deep breathe every time work tasks change, hates when people try to contact me without warning or propose hangs when I already have plans
I keep seeing things like "Imagine if doctors dismissed other things like they dismiss ADHD" and "neurodivergence is the only diagnosis that comes without support"....and I'm sorry but in the nicest possible way...this is just not true at all?
SO MANY other conditions are dismissed or go untreated by doctors. I know a woman who died from stomach cancer last year bc doctors thought it was just anxiety and refused to do any tests. It took me 7 years of bugging doctors to get my endometriosis diagnosis and treatment.
Not to mention how much worse things are for Black and Indigenous people, who are not only dismissed at greater rates than white people, but have also literally been harmfully exploited by doctors in the name of medical science. nytimes.com/2020/01/13/ups…
I hate that practically every resource about ADHD and relationships is framed around "how to put up with your ADHD partner and all the ways they will fail you".
My partner and I BOTH have ADHD, and it is the most fulfilling, stable, and joyous relationship I've ever been in.
Honestly, if you're dating an ADHDer, and you find ADHD traits like losing things, being late, interrupting etc to be dealbreakers...don't date them. You don't have to put up with those things, but you also can't force your partner to magically be someone else.
My partner and I interrupt each other all the time- I love how energetic we are. I often lose things- he helps me find them. He finds it hard to focus on big convos- so we chat in bed where there are less distractions. These traits are not objective relationship ruiners.
I’d rather live in a world where some people mistakenly think they have ADHD before doing more research, than a world where ADHD has no visibility. A psychiatrist confirmed my self-diagnosis, but I never would have known to look into ADHD without memes and social media.
ADHD's diagnostic criteria is based on what it looks like to others- how much we seem like we're not paying attention, how much we seem like we're not listening, how much we talk "excessively" (who determines what excessive is, by the way?).
Conversely, memes and threads and stories capture how ADHD *feels*. I remember going onto the ADHD women’s subreddit and seeing posts about losing keys and letting friends down and having 15 mugs
on your desk at once. I remember seeing myself.
Do you ever think about the impact of consistently telling kids their ADHD related struggles mean they're lazy, careless etc? No wonder some of us catastrophize- many of us were taught that small mistakes DO make us inherently bad.
Growing up, adults consistently made assumptions about what my behaviour meant. I lost things because I was careless, forgot homework because I was lazy, was late because I was selfish etc. As a child I knew this wasn't true and that I was trying really hard to be "good".
But, to the adults around me, behaviour equaled intent. And they expected me to show remorse for that intent, to apologise, and to adjust my behavior accordingly. No matter how hard I tried, I kept making mistakes, which they took as me not bothering to change.
Don't mind me, just sitting here thinking about how angry flatmates and family used to get at me for leaving kitchen cabinet doors open, when it turns out it's related to my ADHD. They always made me feel super inconsiderate even though I tried SO hard to remember.
I'm not saying that ADHD is a get out of jail free card for annoying your flatmates, but it's also not cool to moralise an ADHDer's behavior based on assumptions e.g. interpreting someone leaving kitchen cabinet doors open as them not respecting or caring about the shared space.
I'd love for people with ADHDers in their lives to think critically about what's important and why. If ur consistently hitting your head on cabinet doors or some equivalent, I get the frustration. But if it's bc of what it represents, are u sure it means what you think it means?