Right it’s obviously not on that list. It’s on this list:
According to the National Institutes of Health (NIH), there are approximately 7,000 rare diseases affecting between 25 and 30 million Americans.
This long tail distribution of diseases presents unique problems that I doubt most people even think about. For example, there may only be a handful of experts for some of these and they can be located anywhere and/or difficult to access. My doctor is 2,000 miles away, so I’m obviously not expecting anyone in my area to be an expert on a random rare disease.
However,
I’m not sure this is what I want. I think I’m more interested in accurately identifying all of the damage first with someone who knows what it means. For example, cerebral atrophy and problems related to it are common even long after the disease is technically cured. Do I need to go back to my neuropsychologist for that? I know the literature for the disease inside and out and maintain a catalog of the papers, so it’s not like he’d have to a do a bunch of work hunting this stuff down.
I normally check their qualifications on their website (a hard no to any psychologist who doesn’t have one) and then go in for my first session. These people often have more than a postgraduate degree. They’ll have multiple certifications in different types of therapy and possibly even experience working in a hospital. In rare instances, they may even have experience as a lecturer.
The first session is basically a Q&A session on how they do things and what treatment they intend to use. Based on that and pricing, one can decide where to go.
This is helpful, thanks. My first suggestion was more focused on the emotional comorbidities and some other things I wasn’t sure of (e.g., chronic pain) - which doesn’t sound like your priority. Based on what you’ve said above, you may be better served by one or both of the following:
An updated neuropsychological assessment.
Therapy focused on neurocognitive adaptation, compensation, and rehabilitation. I’d expect this to feel more like a mental version of physical therapy (e.g., targeting and practicing skills/compensatory strategies/cognitive exercises specific to identified injuries/challenges) than “talk therapy.”
The latter might be provided either by someone calling themselves a neuropsychologist or by a clinical psychologist with specialized training - possibly depending on what’s available in your area. I’d think your previous neuropsychologist would be able to point you in the right direction, and obviously defer to them vs. anything I say here.
I’ve started exercising more regularly and it’s doing great things for my mental health. A week or two ago I nearly broke down crying in front of my girlfriend, which would be fine if there was an actual reason for it, but it was just general ennui. I guess more specifically, I was sick of fighting battles with my brain about how it constantly wants me to do things that aren’t good for me. Drink, smoke weed, watch porn, procrastinate on awful YouTube videos until the entire day is gone, etc. It’s a daily struggle for me to do things which elevate my wellbeing as opposed to things which maintain a sufficient level of distraction to take me through until I die.
Anyway, exercising makes me feel a whole lot fucking better. This is a lesson I have now relearnt approximately 643 times. I am not a fast learner.
Do you find yourself sometimes hungry for a certain kind of experience?
I’ve started categorizing experiences like exercise. It helps me see what I’m trying to manifest.
Oh! I need an intense political discussion.
Oh! I need an intense physical expression of this energy.
Oh! I need an intense personal discussion with vulnerability and disclosure.
Oh! I want a low-stakes sequence of laughs.
Looking at it likes that helps me separate the need from the strategy to fulfill the need. There have been times I used the Trump thread of all things (or just forums and social media in general) to try and fulfill all of those needs at the same time.
I’ve done it IRL too and only realized later that each interaction was secretly me hoping to provoke the kind of dynamic I needed and usually only finding such superficial, indirect fulfillment that I’d need to binge all day to get close to satisfied.
Exercise is a good example because sometimes I feel so hungry or jumpy or frantic, but running a couple of miles or just ten minutes of pistol squats or anything that requires intense sustained exertion helps process that feeling. There may be emotional stuff waiting underneath, but at least it puts me in a place where I can attend to what comes next.
I gave a student a grade he didn’t like along with feedback for an essay he wrote. I didn’t fail him but gave him a 2 (the equivalent of a B in the US) instead of a 1 which would be an A. He pretty much broke everything down piece by piece, countered it and demanded an explanation as to why I graded the way I did.
Of course fuck that. I’m not writing a dissertation addressing every little thing. My feedback speaks for itself. I made the situation clear in a friendly manner that the grade would stand. Apparently, this led to another dissertation with him threatening to take me to some committee for my “irrational grading”. Students are entitled to a rewrite of a paper if they want to do one. So, I made that offer. Given that he’s a smart student, I’m sure he’ll rewrite it as instructed and get a strong grade.
That said, he could continue to go on his narcissistic rage and try to get me fired like George Costanza tried to get a mechanic fired over a Twix. Shit, maybe he’ll put out an essay lineup or something like that. I think it’s him being a prick by trying to intimidate me though.
I know my thinking of this being some kind of OJ Simpson style trial that leads to me getting fired is completely irrational. However, it still sticks in my mind. I don’t know what to expect here and the student in question has some considerable influence due to being essentially a model student. Again, I know the thought is absurd but I don’t know how to divert my attention away from it.
Sometimes I wonder if my job is worth it. I’m clearly overqualified for the position I hold but covid has been an issue for moving forward. I really have no idea how people stay in a position like this for their entire career. Then again, what could I do if I left this? I really have no idea what I would do.
Thank fuck next week is mid-winter recess. The week after is likely to be back to school for some of my classes, including the one this student is from. At that point my anxiety will fire right back up.
Shit, I wonder if I should even work over the summer like I normally do. Maybe I should say fuck it and take two months off to have a Summer of George.
I have a messed up knee, which is not too bad - I can hike or cycle indefinitely without hurting it - but it does preclude running or playing virtually any kind of sport, which is a shame, otherwise I would definitely still be playing touch rugby (which is how I messed it up in the first place). I feel like that is definitely my biggest loss from the injury. My competitive sport is limited to rogaining which I really like - I’m going in an event in Tasmania with my girlfriend on Saturday week, on Bruny Island:
I like hiking so my standard exercise is to go to the conservation parks in the Adelaide Hills only about 20 min drive from my house. I find this a more fulfilling experience than grinding it out at the gym. However, it’s a decent time commitment and it’s not always convenient, especially being mid-summer right now and the temperature being like 95 on the regular, I have to go in the evening or not at all. Recently I put on a bit of weight and realised that I had started finding it a chore to drag myself out for that amount of time, so I was like “this isn’t cutting it” and joined the little 24hr gym around the corner. What I’m finding is that the amount of exercise I was doing wasn’t really cutting it for my mental health either. I know eventually I’ll start finding the gym a chore too, but hopefully I can keep this up for a while. Just doing cardio on the bike right now but planning to start doing some lifting. Right now I’m concentrating on building in the habit of going. Going to head there now and put half an hour in.
Yeah we had actually booked via Melbourne and had to rebook a direct flight, there’s only one direct flight a day and not every day. My gf is finishing up at a job she has been at for literally 20+ years, only real career job she has ever had (before that just bartending in college and whatnot) and we are now flying directly out after that. Like the flight is at 5:30pm that day. Gonna be intense.
I’m not a hot mess or anything, I do OK, it’s just a daily struggle. I get frustrated with my own brain but I try to remember to treat it with kindness. If you’re a brain susceptible to the kind of short-term gratification I’m talking about, the modern world is a rough place. It’s so easy to put fence wire through the fuses in your brain and crank the voltage up. There are literally giant multinational corporations running mass experiments on the human brain to determine the best way to induce it to bury itself in distractions, how to manipulate emotions, etc. It’s a lot to cope with.
Anyway, he got away from that intimidation and threat bullshit and I did explain almost too thoroughly what I meant regarding his grade. Not sure what his response will be but fuck him either way.
It’s why I fucking hate giving writing assignments. No matter how hard I try to implement objectivity, there’s enough subjectivity that people will bitch and complain about it.
That set my schedule back. Time to sacrifice sleep to put together a test.
I know this is a double post but how do all of you train yourselves to not constantly see the worst-case scenario in all situation and then freak out about that?
For me that works when I’ve seen a similar situation.
These experiences are unique and so the outcome is unclear. I suppose these things would cause anxiety in anyone but to me it’s a more intense feeling.
It depends on where the feeling and obsessive thoughts are coming from.
If I am trying to predict or control an outcome, I fulfill my need for control by engaging in activities where I have a healthy locus of control. It helps me accept the areas where I have no control, such as what I might be obsessing over.
For me, I can get out of the cycle if I express the worst-case scenario thoughts to another person out loud. As long as they agree not to try to fix whatever I’m telling them. It’s just the act of sharing that helps me.
Sometimes there is nothing that can be done to get rid of the feeling and what helps is to stop fighting the feeling as something to be overcome and start processing the feeling as something that might always be with me.
It’s more acknowledging that your anxiety is making the situation worse than it appears and thinking of other situations where you did the same thing and everything turned out fine.
I really admire people who aren’t feeling good mentally and still manage to exercise. Even though I know I will be better off, it’s sometimes so very, very difficult to convince myself to do it.
