The Mental Health Thread

[Istiblennius]

I would be curious to know more about the logistics of how things worked out with the student. My PI's concern is that we do not know have a concrete plan in place to maintain safety in the lab; I think this is a major reason he wants me to stay away for now.

I need some type of plan to minimize disruption and stay safe in the lab, but I'm rather stuck as to what that plan would look like.

With my student, this was a collaborative process between the student, our disability support office, and myself. We had to determine reasonable accommodations and then make sure everyone was aware of those. With service dogs, there is sometimes pushback around lab settings, I know, but it is possible to train and have a service dog in a lab setting.

https://www.nature.com/articles/d41586-021-00190-0

I wonder if since your PI's main concern seems to be a disruption to the work of others or that you are unable to work alone in the lab safely, even having a non-lab personnel attendant would help you. Similar to how we have interpreters work with our students who are deaf. That person does not work for or in the lab, but is rather there to support the student.

[smallcleanrat]

Have you talked to the accessibility folks at your university about a plan/accommodations for safety in the lab? They may well have experience with others with seizures.

I've had a few back-and-forth communications with the accessibility office this week. Mostly information gathering, no plan or accommodations so far, but I'm hopeful that something can be worked out soon.

Istilbennius, thanks for sharing further about the process with your student.

Have also met with my psychiatrist to talk about how meds adjustments might contribute to reducing seizure frequency.

In the meantime, are there things you can work on that don't require you to be physically in the lab? Can you write up papers based on already collected data? Write a review article?

Definitely! The time away from lab doesn't have to be unproductive. Thanks for reminding me of that.

I've also been resting a lot, trying to recharge my batteries. I'm pretty sure fatigue is a major trigger for me, and if I can manage my energy levels better maybe I will make myself less vulnerable to the seizures.

I'm still waiting for the neurologist to get back to me about finding a therapist.

I am so glad to see you post again. I am sorry to see that it is for an unhappy reason, but I hope that you can report back on he progress that you make in dealing with this as I am sure that you will make progress!

You can not fault your PI for making your health and safety the primary concern.  It is unfortunate that you do not yet have a plan worked out to ensure that you and the lab participants are safe, but perhaps that will be something that can be worked out while you are 'on pause'. 

In the meantime, (for my own selfish reasons, mind you) feel free to post any updates about your cats!  I miss hearing about them, and hopefully that distraction will help you too! 

Again, Welcome Back!  You have been missed!   I am glad that you are relatively well, and that other areas of your life are improving!

clean, thank you so much for your kind message! It made me feel good to be posting again.

And I will definitely rejoin the cat thread to share the exploits of my two critters.

[apl68]

It sounds like you're taking a good variety of useful, constructive steps, smallcleanrat.  I hope that the accommodations office can be of help.  Some good rest will definitely be helpful.

Wishing you the best as you continue to deal with this, smallcleanrat, and you are in my prayers.

[smallcleanrat]

It sounds like you're taking a good variety of useful, constructive steps, smallcleanrat.  I hope that the accommodations office can be of help.  Some good rest will definitely be helpful.

Wishing you the best as you continue to deal with this, smallcleanrat, and you are in my prayers.

Thank you!

[smallcleanrat]

Does anyone here have advice on how to deal with the anxiety of not being taken seriously by medical professionals?

I was already running into this issue before the prospect of being diagnosed with PNES, because my records show a significant history of psychiatric issues. Practically any problem I had could be attributed to stress, anxiety, or depression. There have often been heavy hints through wording, tone or body language that I was wasting people's precious time by seeking medical help for what amounts to nothing more than my inability to manage my own life.

I've been reading up on PNES (combination of academic texts/journal articles and books/articles for a general audience), and some of the stories and information I come across makes me scared to ever encounter a medical professional again, especially with my neurologist on record saying they heavily suspect a PNES diagnosis for me.

Apparently, there is a significant percentage of medical workers (EMTs, nurses, doctors) who equate 'psychogenic' with 'deliberately faked for attention (or drugs)' and view patients with this issue as a waste of time and resources. The older term for PNES was "pseudoseizures", and there's been pushback in the medical community to stop use of the term precisely because of the harm the "fake" connotation can cause for patients, but it's still a frequently used term. (An even older term is "hysterical seizures"; egad). I've watched more than one webinar in which doctors lecture to other doctors to please stop rolling their eyes and talking about such patients with contempt, indicating this type of behavior is common.

I had already been trying to convince my labmates and PI to stop calling paramedics when I have an episode, and now that I've read about some of the humiliating EMT/hospital experiences other people with PNES (and even people with actual epilepsy whose seizures have less typical presentations) have had, I'm doubly desperate to avoid it all.

[Langue_doc]

Here's the link to the NYT article on medical gaslighting. Do read the comments as well I recall finding them interesting as well as educational.

https://www.nytimes.com/2022/03/28/well/live/gaslighting-doctors-patients-health.html?searchResultPosition=1

[Funastrum]

On Gaslighting, I was convinced I was sick.  Various Doctors said no.  My insurance allowed me to go to a specialist without a referral.  I went to a medical school affiliated neurologist whose online ratings said she was mean but highly competent.  I waited 6 months for an appointment and drove kind of far to get to her.  She sent me for tests and diagnosed me within a few weeks (and was kind of mean about it).  I had major surgery (off work for months), better care, and have felt healthier afterward.

The weird part is that I have always felt a little like a hypochondriac but somehow this problem did not seem that way.  My PCP suggested therapy to resolve my symptoms.  Even weirder, I have kept him as my PCP.

[smallcleanrat]

Here's the link to the NYT article on medical gaslighting. Do read the comments as well I recall finding them interesting as well as educational.

https://www.nytimes.com/2022/03/28/well/live/gaslighting-doctors-patients-health.html?searchResultPosition=1

Thanks for the link. I know it's not reasonable to expect perfection from the healthcare system, but stories about missed diagnoses like the ones described in the article and comments are so concerning. And I know it's important to self-advocate, but with some people this might backfire and get you written off as a "difficult" patient.

I get anxiety about medical appointments, not from fear of being poked and prodded, but fear of being talked over and dismissed.

On Gaslighting, I was convinced I was sick.  Various Doctors said no.  My insurance allowed me to go to a specialist without a referral.  I went to a medical school affiliated neurologist whose online ratings said she was mean but highly competent.  I waited 6 months for an appointment and drove kind of far to get to her.  She sent me for tests and diagnosed me within a few weeks (and was kind of mean about it).  I had major surgery (off work for months), better care, and have felt healthier afterward.

The weird part is that I have always felt a little like a hypochondriac but somehow this problem did not seem that way.  My PCP suggested therapy to resolve my symptoms.  Even weirder, I have kept him as my PCP.

Glad you were able to find a competent doctor in the end. Sorry that it took seeing multiple doctors before you got real help.



I might be in a somewhat different predicament, given that my problem might actually be 'all in my head'. So the concern is it might be dismissed as not a "real" problem or, worse, a consciously faked problem. I've not only read accounts from patients. I've read accounts from physicians/nurses/EMTs saying that, even though they know intellectually that psychosomatic issues are not the patient's fault, they have to consciously battle against knee-jerk irritation and impatience because part of them still feels that the patient can simply choose to stop having symptoms, and suspects malingering, attention-seeking or hypochondria.

What scares me most are potential EMT encounters. With a scheduled medical appointment, I can prepare and brace myself. With an emergency response encounter, I'm either just coming out of or still experiencing an episode, and in a really vulnerable state. It can take me a little while to recover from disorientation and to regain the ability to control my body and speak. I've already had experiences of being spoken to brusquely or mockingly, and of getting bruised from being handled roughly. I worry it's just going to get worse with an explicit diagnosis of psychogenic seizures.

[Funastrum]

I advise going to a completely different doctor and trying again.  Maybe try telehealth. 

FWIW I also do poorly at doctors' offices.  Sometimes my blood pressure goes so high that it makes them anxious or they talk about sending me to the hospital.  I now have to tell them that I get white coat syndrome and to wait a minute and try the other arm before they worry too much.  Dogs and I share a fear of all things medical.   

I used to ask if I was going to explode like that Monte Python movie but they have no sense of humor that I can detect. 

[smallcleanrat]

When something happens that makes you feel embarrassed or guilty, how do you find the balance between 1) mentally examining events with the constructive (?) aim of damage control/future prevention and 2) fruitless ruminating and beating yourself up for something you can't go back and undo?

For the past week or so, my PI gave permission for me to try working half-days at the lab with the understanding that I would 1) stay home entirely if I didn't feel well or 2) go home early enough that fatigue doesn't set in and trigger a seizing episode. Yesterday morning I felt fine, so I went in. By noon-ish, I was feeling less fine and not all that steady to go grab the bus, so I stuck around hoping that resting a bit would get me to feeling better to make the trip home. I ended up having a seizure, with my PI sitting with me until it was over to make sure I was ok. He stayed with me until I was recovered enough to get up and head home.

It's always embarrassing when something like this happens, but this time I feel especially bad for wasting someone's time and stressing him out. Because I was supposed to be responsible for pacing and timing myself so that I could avoid episodes happening at lab. I'm not really sure what triggered it this time, so I need to think about whether there was still something I could have done to prevent it without falling into the black hole of shame, because that just feeds more negative thoughts and helps no one.

[Hegemony]

It makes sense that you wouldn't have 100% certainty about exactly what conditions, for how long, would be too much for your system. It makes sense that you would venture out and cautiously test the conditions, which is exactly what you did. Staying home 24/7/52 might protect you from seizures, but it wouldn't do you any good nor let you know where the exhaustion line sets in. You need to get a feel for it. The only way is to try it out some and get more data. That's just what you did.

It's exactly like a scientific experiment — in fact it is a scientific experiment. You would never decide not to run any experiments because one of them might fail at some point. If you're not failing at some points, you're too cautious.

Your ultimate goal is to understand how to manage your condition. Now you have more data.

As for the idea that you "wasted someone's time," I think that's part of the Great American Lone Cowboy mythos — that we must never rely on others for anything. The studies actually find that Americans (not all people of all other nations! not at all) feel more stressed when they get help than when they give help. That's because there's an unspoken law that we must never receive help that we cannot reciprocate. So when someone is ill and neighbors bring around chicken soup, the American is doing a secret subconscious calculation: "How can I pay my neighbor back somehow so I don't owe a favor? Oh my God, I have to make sure to pay them back, or I am in debt!" We're thrown into a tizzy by being the recipients of help.

Reflect that your colleague who helped is now feeling on the bonus side of the ledger and is buoyed up by having helped. He is feeling useful and un-owed. In American terms, you did him a favor. 

I hope you won't see any future over-exhaustion episodes as "failures," but as further data points. Just as someone who is insulin-dependent needs to get the hang of their diet and having the right food handy and all that, you need to experiment and do course correction to get the hang of the whole thing. No shame there. Good science behavior!

[clean]

I think that you learned something.
You were able to be at work X hours before a seizure.
Set a timer for X hours MINUS the time it takes to close down and get home. 
Tell them your plan, and as soon as they are ready to let you implement the plan do so. 
Confirm that it works.  Make notes each day at the end to indicate how you are feeling and how much longer you think you could have gone. 

After you have been successful with your plan and reviewed your notes, get permission to extend your work by 1/3rd or so of your estimated time.  try that for a while, and then get permission to extend some more.
IF you have a seizure during any of that time, return to the prior known 'good time' and work that another several weeks. 

Im sorry that you worked beyond your limit, but you learned something, and learning isnt always free from 'pain' (or whatever).  Look for the upside, the gain in knowledge, not the downside. 
Then use the knowledge to improve the situation.

[apl68]

When something happens that makes you feel embarrassed or guilty, how do you find the balance between 1) mentally examining events with the constructive (?) aim of damage control/future prevention and 2) fruitless ruminating and beating yourself up for something you can't go back and undo?

For the past week or so, my PI gave permission for me to try working half-days at the lab with the understanding that I would 1) stay home entirely if I didn't feel well or 2) go home early enough that fatigue doesn't set in and trigger a seizing episode. Yesterday morning I felt fine, so I went in. By noon-ish, I was feeling less fine and not all that steady to go grab the bus, so I stuck around hoping that resting a bit would get me to feeling better to make the trip home. I ended up having a seizure, with my PI sitting with me until it was over to make sure I was ok. He stayed with me until I was recovered enough to get up and head home.

It's always embarrassing when something like this happens, but this time I feel especially bad for wasting someone's time and stressing him out. Because I was supposed to be responsible for pacing and timing myself so that I could avoid episodes happening at lab. I'm not really sure what triggered it this time, so I need to think about whether there was still something I could have done to prevent it without falling into the black hole of shame, because that just feeds more negative thoughts and helps no one.

Well, sometimes we overestimate what we can handle on a given day.  Last week, I struggled for much of the week with...something that was compromising my ability to do my job.  I've had earaches off and on for most of my life, and have had several bouts with them in recent months.  Monday the pain in my ears and head was bad enough that I couldn't do my work effectively.  I spent half the day stressing out about my inability to think or focus on the assorted things I had to do.  Finally I took the latter half of the day off.  I treated my ears with ibuprofen and soothing heat on the ears, and felt better.

During the night I woke up with my ears and head bothering me again.  I got up, took more ibuprofen, and warmed my ears again until I felt better.  Then I went to bed again, dozed off, and woke up again with the worst nightmare I've had in a long, long time.  I think I was actually trembling violently before I woke up.  It was a stress reaction to my chronic worries over chronic, expensive HVAC system problems at work.  I felt too wiped out to go into work at all that day.  The next day I had no choice about going in, since there was payroll and bill paying and other urgent work to do.  I spent half a day doing that, felt exhausted (But not in pain, at least), and went home for the rest of the day.  I even took a COVID test for fear that my fatigue might be an odd manifestation of that, and tested negative.  Thursday I went in for a regularly-scheduled short day.  Friday I was finally able to work a full day and get some serious work done on my backlog of work.

I'm saying all this to say that we all go through periods where we can't handle everything we need to do at work, due to a combination of physical and mental stress issues.  Your problems may be more acute than they are for many people, but they're not fundamentally unusual.  You don't need to be ashamed of them.  As clean pointed out above, you're learning right now how much you can handle.  Which means you're going to run into your limits.  We all have to accept that sometimes our limits aren't what we wish they were, yet we have to abide by them in order to rest up and try to come back more effective.  I had to remember that lesson at work last week.  It sounds like you're having to do something similar.  It's okay to have limits.

[smallcleanrat]

As for the idea that you "wasted someone's time," I think that's part of the Great American Lone Cowboy mythos — that we must never rely on others for anything. The studies actually find that Americans (not all people of all other nations! not at all) feel more stressed when they get help than when they give help. That's because there's an unspoken law that we must never receive help that we cannot reciprocate. So when someone is ill and neighbors bring around chicken soup, the American is doing a secret subconscious calculation: "How can I pay my neighbor back somehow so I don't owe a favor? Oh my God, I have to make sure to pay them back, or I am in debt!" We're thrown into a tizzy by being the recipients of help.

Reflect that your colleague who helped is now feeling on the bonus side of the ledger and is buoyed up by having helped. He is feeling useful and un-owed. In American terms, you did him a favor. 

That's interesting; definitely a different perspective for me to think about. I have noticed I feel especially pressured (by myself and no one else) to do more work after I've had an episode, because I feel a need to 'make up for' the time and trouble it causes.

I really appreciate the way you frame learning to manage my issues as an experiment. You're right; better to think of these incidents as data than as failures.

I think that you learned something.
You were able to be at work X hours before a seizure.
Set a timer for X hours MINUS the time it takes to close down and get home. 
Tell them your plan, and as soon as they are ready to let you implement the plan do so. 
Confirm that it works.  Make notes each day at the end to indicate how you are feeling and how much longer you think you could have gone. 

After you have been successful with your plan and reviewed your notes, get permission to extend your work by 1/3rd or so of your estimated time.  try that for a while, and then get permission to extend some more.
IF you have a seizure during any of that time, return to the prior known 'good time' and work that another several weeks. 

Im sorry that you worked beyond your limit, but you learned something, and learning isnt always free from 'pain' (or whatever).  Look for the upside, the gain in knowledge, not the downside. 
Then use the knowledge to improve the situation.

That's a very practical approach, and I plan to implement it. Started a fresh notebook today to serve as a logbook. Thanks, clean!

Apl68, thanks for sharing your thoughts and experiences. It does make me feel less alone and less down on myself.



With this latest episode, I didn't notice feeling especially fatigued. I suppose that can mean either 1) I need to pay more attention to my body's signals or 2) there are other triggers/contributing factors that I need to identify. I guess I'll just have to keep reminding myself to do regular self check-ins and use the logbook to try to spot patterns.

I'm working my way through a book called Taking Control of Your Seizures that walks you through things like self-awareness exercises and relevant journaling techniques. It's meant to be used with a trained therapist, but since I have no idea how long it might take me to find one, I decided to see how much progress I could make on my own.

Small victory yesterday. My slogan for the new year is "Avoid avoidance." For me, this includes pushing past my anxious aversion to dealing with doctor's offices. So far, I haven't gotten much medical guidance about how to manage this disorder, so I went to the neurologist's in person and talked to reception. I didn't leave until they said they would talk to the doctor and be in touch later this week with some info about treatment options.

[AvidReader]

I am in no way a medical professional, but this is the part of your post that jumps out at me:

Yesterday morning I felt fine, so I went in. By noon-ish, I was feeling less fine and not all that steady to go grab the bus, so I stuck around hoping that resting a bit would get me to feeling better to make the trip home. I ended up having a seizure, with my PI sitting with me until it was over to make sure I was ok. He stayed with me until I was recovered enough to get up and head home.

Is there a quiet place you could go to rest if you realize that you are getting tired but don't feel steady enough to manage the bus, assuming it's safe for you to be alone? For instance, I know many institutions provide private spaces for breastfeeding mothers (I also know these vary dramatically in quality). Maybe you just need a cot or a couch or a big comfy chair in a dark room, maybe with someone to check on you every 15-30 minutes (or not) so that you can rest enough to get home safely.

AR.