Should one tell one's workers?

General Idiopathic Facial Pain Discussion
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I have spent the last hour or so trying to find an answer to this. The only threads I have found were covering the opposite situation. So I guess it’s ok to start a new topic.

My situation is that I am a research group leader at a university. My students don’t know about my constant and variable pain condition. Telling them would surely make them understand better why I arrive rather late at work and many many other things as well. But I fear that they will not understand deeply (who ever does? I know none when themselves unaffected) and that they might, for example, attribute me handing out criticisms with me having this illness. So in essence it might undermine my authority and might lead to blame. It’s hard as it is. And, cnce I tell them I can’t take that back, so I wish to make a well informed decision. How have other people dealt with this or what would you recommend, please?

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I’ve been giving this a great deal of thought. Let me start with series of questions: If you were in a wheelchair would it undermine your authority and lead to blame? If you were epileptic and had a seizure at work would it undermine you? Would your staff blame you for it happening? Would they doubt your leadership because of it? Do you wear glasses to correct your eye sight? If you do does it undermine your leadership?

Do you see where I’m going with this?

You have a disease/chronic condition that you manage on a daily basis. In essence, it is you. Unlike people in wheelchairs or wearing glasses, your issue is hidden. This does not make it less of an issue or less important to your daily life but it does give you the option to not discuss it. The thing is, sometimes not discussing something makes a situation worse, not better.

I’m not advocating wearing a bright yellow t-shirt that says “I Have Daily Pain” on it in bright orange. But I’m not advocating hiding something that impacts you or your work.

I have neurologically complicated migraines, ATN, and lymph edema in my left arm. None of these things can be seen. All of these things impact me on a daily basis and impact what I am able to do and how I am able to do it. With the lymph edema I have limited use of my left arm, which you would never notice until you asked me to lift something. At first I would, often flaring the lymph edema by lifting something I shouldn’t have. Now, I’m very straight forward about the fact I can’t lift with my left arm - I mean I can but it will cause the lymph edema to flare up for days after so for my own well being I can’t. So I decline to lift things and ask for help for even the smallest item to move that requires two hands. People have always been very understanding. I didn’t make some large general announcement, but when it came up I explained.

I’ve handled migraines and ATN about the same way. Sometimes migraines make me very angry, I call it “free floating rage” because there’s no reason for me to be so angry at every little thing, but it does happen. When it does I have warned the people I work with directly that I’m having rage issues because of a migraine and to leave me alone, that I don’t mean to be a bitch on wheels, please forgive me, and please go away for now. It’s worked for me the majority of my career.

I actually think being upfront with people I work with every day on an as-needed basis has helped me, not hurt me. My colleagues know I’m honest, they know I have issues, and they know I will not let those issues impact my work or theirs.

I do want to stress I didn’t make some general sweeping announcement about me and my life, I simply informed people as-needed and let it go from there. The gossip took care of the rest for me, information about me gradually spread around and it was no big deal. In fact, I’ve had people approach me with questions about migraine, people have literally come up to me and said “I heard you have migraines, I was wondering…”

When people know there are things going on with you they actually do understand and will make allowances (within reason) for things like being late on occasion. Your biggest challenge is you must never been seen to use your issue as an excuse to do poorly.

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Thank you Azurelle for the swift and in-depth answer. I absolutely see what you are saying and I think that your answer applies to many readers here. I am not fully sure it applies to cases like mine, though. When my daily peaks hit me, the pain is actually not very high (maximum a four out of ten) but they come with what the English world calls “brain fog” (a brilliant term that I wish we had in Germany too). And given that my job requires anything but brain fog, I have a problem and the students then have a problem, too. To use your example, if I were in a wheelchair and had an accountant job, that’s fine and I indeed would not even want to hide my condition. But if I were a brick layer in a wheelchair then I think the problem does arise. Also, if I had TN1 I would have higher range of pain level but with some luck I wouldn’t have it so often and/or so long lasting. So, while I definitely would loathe higher pain levels, that condition would be less of a problem communicating to my students (maybe I am totally wrong here - after all, I don’t have TN1). But constant pain can come with some constant brain fog (and in my case, with peaks in both pain and fog) and I would lie if I said it doesn’t affect my ability to think/work/supervise (I still do a good job overall, I think, but it definitely could be better and was better in the glorious past without pain). And given this, it still seems a question to me if I should tell my students. I think it could undermine my authority simply because it really does have negative effects on me and them. :cry:

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I understand “brain fog” although I tend to get it with migraines rather than ATN, those periods of time when I simply can’t think.

I was wondering about you, though. Is the fog from the ATN ramping up? Or is it from the medication you take to manage the pain? These are two very different kinds of fog and have different ways of being managed.

I’m not familiar with ATN causing an actual brain fog like a migraine does, it’s known for pain, not impaired thinking, but I am familiar with ATN pain being so distracting you might as well be in a fog. Which is why I question you. If the pain is causing the fog and you know you have a daily peak would it not be an option to medicate against it? To experiment with better pain management?

Since you have ATN I’m specifically thinking about the lidocaine patch. Have you tried that yet? I personally find that wearing a strip of patch along the nerve branch that’s firing has actually stopped flares. If I so much as think my face is starting to feel funny I put a patch on and it seems to stop the flare, or at least slow it way down. Since your peak is relatively low on scale of 1 to 10 I think you might have very good luck with it.

It would also have the possible bonus of giving your students a visual cue that something is going on with you. If the fog is from meds you may want to try switching things around. Maybe a different dose or a different time of day to take them will reduce the fog feeling and help with the ramping up of pain.

It sounds like you have a handle on when things start happening every day, is it an option to work with that timeline and medicate along the timeline you’re working with every day?

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Hello. I will relate my experiences and hope they offer additional perspective. I led a high stress high public profile department. At first, my closest assistant was a trusted confidant when I first had issues with pain and flares. Eventually I told my entire work team. The brain fog I experienced with Gabapentin was enormous. The strangest thing was that everyone stated that they really never could tell unless I let them know about it. My own perception in brain delay was seemingly magnified. Best wishes to you~

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I have told close friends and associates that I have an extremely painful condition that comes and goes. My 6-year old, left-side, V1 attacks are rare and awful, but I can get away and not freak people out while under attack. My 2-year old, right-side, V3 attacks, thankfully currently in remission, are beyond description and basically cause me to fall to the ground and scream for 5-minutes to an hour, essentially preventing me from functioning. I have told those people that it is not life threatening and not to call 911. I don’t want them to think I’m dieing if it happens when they are present. It’s worked for me. Everyone has to do what’s right for them.

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Thank you all for your replies.
I shall reply to single points, one by one, simply because I got a peak right now and have summer flu (which is the reason of my slow reply). So I have brain fog squared.

It is very very interesting to hear that ATN is not associated with brain fog. Is that the usual perception? If so, this would make my case different, I guess, because the brain fog definitely comes with the peaks and is independent from medication (yes, I know brain fog from medication, as probably nearly everyone here does, but I get the brain fog reliably during my peaks even if I am not under any medication).

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Hi Flying. Thank you. Looking back, do you think it was overall a good idea to tell your team? Also, do you have constant pain, or attacks?

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Me again. :slight_smile:
There are no lidocaine patches in Germany or I could not find them. But I found lidocaine creme and which I applied repeatedly to the painful area (my left temple). No effect.

As for targeting my peaks, in the first year or so I used OTC painkillers to get through them. Most things, except aspirin, help somewhat. But they left a mark on my organs and also I became afraid of medication induced headache so for both reasons I do use this approach rarely these days.

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Are you taking any daily meds for ATN? Are you seeing a neuro for assistance?

The reason you were getting medication headaches and possible organ issues from OTC meds is that you were taking way, way, way too much of them. Which tells me you need prescription help. You can get the same level of relief from much less medication when you move to prescription strength.

It just seems to me that since you have such a good handle on what happens when you should be able to manage it with the assistance of medication. ATN often response to medication when TN does not.

Lidocaine patch is available via prescription in Germany and there might be OTC versions. Brand names include Versatis and LidoPAIN in Europe. There might also be something called Aspercreme available to you (I’m in America so it’s hard for me to know exactly what’s avail in overseas). The patch is much different from the cream because it provided steady medication to a specific location for 12+ hours at a time. It doesn’t tend to be a quick fix sort of med but it does seem to be more pervasive in the way it helps keep things calm.

I find it interesting the you peak at about the same time every day (am I understanding that?). That tells me you’re probably triggering it somehow. Have you keep a daily journal was what you’re doing and when/how the pain happens?

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forgot to sign my name… I’m a member and moderator at large…azurelle

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Overall I think it was a good idea to tell my assistant and then also my secretary. Most of us dislike to put people in positions where they share a burden of confidentiality needlessly- but having a couple people was really an asset Sharing does open up vulnerability. I got mixed reactions from upper management which included excessive check-ins of “are you OK today?” or puppy face eyes with “how are you doing-really?”. As time progressed I became more reserved with sharing. I have GPN, my father, aunt, and sister have TN. A few years ago I had daily waves of shifting pain and lost my gag reflex which made eating a chore. One tooth would hurt for a few hours, then nothing, then my throat would feel like it was closing up then my skulll would hurt, etc. Cautiously considered surgery. Now my pain is tolerable without medication and at a much lower level. My GPN and was brought about by a viral infection. I think my nerves have been able to somewhat heal since. Feel free to ask me any more specific questions about work.

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“Damned if you do and damned if you don’t.”
My experience has been most co-workers and even friends, in general, do not want to hear about it. The most common issues have been, I don’t appear to be in pain, my brain fog is from illegal drugs (I do not use illegal drugs), and/or I’m making it up as an excuse for missing work, and for not wanting to go out of the house to socialize. My therapist assured me if I let people know about my TN, that they will understand and show compassion. Only a few close friends do. Other people feel the need to create a story about what’s “wrong” with me. I suffer from electric shocks and burning on the right side of my face, and occasionally constant pain that moves every few days on the left side. Sad, but true.

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WhaT AN INTERESTING CASE! I if I had “brain fog” from any medication would find a different medication! There are many out there that you can take that will not give you that problem. Tell your nero that it is causing a problem and have him or her change it. I can speak from MUCH experience about pain meds.
I used to work as a nuclear engineer. I had a machine part dropped from a broken crane cable on me. I am now after 24 operations many months on the hosp. and lots of thrp. and I have TN. I have had all the procedures to stop the pain, the last one was MVD. That was a real bummer. I don’t have any more pain or feeling in my right side or taste for food, or able to hold the food in my mouth on the right side or be able to hear anymore from my right ear, etc. SO! The upstage is change the problem that you are faced with. Gab is not the only thing that works for TN. BTW Good luck to you. I hope you can find relief for your dilemma.
Wheels 4 legs said all that.

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Hi Azurelle, thank you.
Re: lidocaine patches, that’s very kind of you to look for locally available types. You are right, there are prescription types here. I could ask my doc. But I have a trip to the USA coming up and will buy me OTC types there I think. In my experience docs don’t like to be asked by their patients too many requests for medications (threatens them in their security perhaps, I don’t know) and so I like to keep the requests on the low side.

As for triggers, I mentioned somewhere that I am a scientist :slight_smile: - and so I systematically tried all kinds of things to see if sth triggers increased pain. I tried everything I could think off. The only thing that seems to trigger it is simply waking up - and after that event, the pain curve will simply take its course. Some pain medication (while so far not helpful) shifts the peaks somewhat and which tell me also that this curve is something physiological, i.e. internal, and not due to outside triggers.

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Hi Azurelle, here part two of my answer.
Re: “ATN often response to medication when TN does not.”. I have not found anything that can prevent my pain. The only thing (painkillers) that works are treatment of symptoms. I guess I am lucky to even have that.

I am under treatment, yes. Currently opioids and lyrica. But I was just given also Botox directly into the pain area so let’s see (i previously only had Botox in the main chewing muscles and that didn’t help). My pain is mainly on the left temple. I want to taper off the opioids and the lyrica as they only give me side effects but didn’t dish me any mains.

I am not completely sure what you meant by prescription strength pain killers. Do you mean to say that OTC painkillers contain too much filler?

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Dear Flying. I hope your pain stays low.
If I understand you correctly then you would advise to share, but not widely. Only with key people. Is that correct?

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Dear Rossman51,
I hear you. I would not be surprised in the least if a twelve year old kid who suffers from chronic pain and who I have never met would immediately understand me better than even my own family after years of trying to explain to them what this means and feels like. And then what hope is there for work colleagues? But I am in high pain today and maybe a bit too grumpy, so I better stop that thought here.

Just to also say: yes, I have had similar experiences: people try to explain it to you (“healthsplaining”, I like to call it) and it doesn’t seem to matter sometimes if and what your role then is, according to all their explanations (I haven’t had the drug accusation yet, but I could totally see that thrown my way, too). Instead of compassion I have also experienced what can best be described as mild aggression (which still is a slap in the face - and we really don’t need further pain in that area). But I have seen compassion, too, it has to be said. Only more rarely so.

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Hi wheels4legs (great name btw)
I am sorry to hear if your suffering. I very much hope the feelings will return to your face after your operation (minus the pain).
I am following the route you depicted: my guide is that I would like to find medication that helps my pain but without interfering with my thinking. I guess the good news so far is that my pain is mild, relatively speaking (4 out of ten max during peaks) - but the bad news is that a) no medication has so far prevented my peaks or reduced them so that I would notice an effect and b) so far, most medication I took did give me brain fog. And so, I am sorry to not being able to agree with you on one of your points: to me, there seems to be very few (if any) medication types that do not give me brain fog.
Reading here on the forum I think what is the case is that everybody reacts differently to the meds. For example, on topiramate I barely knew who I was or how many, but maybe there are people who can take topiramate just fine and with few if any such side effects. For me, it was the worst so far - but that doesn’t seem to generalise across all people.
In any case, I am still on the hunt to find my meds: namely with a favourable side effect to main effect ratio. There are just not many options left anymore (and so, next would be to try more combinations)

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Click Me!

Hi New Friend,Wow I can bet you are going through hell. That “no help” thing is really a bummer for sure. But really don’t give up. There are something’s out there that should give you aid and not fog your mind as bad. I feel for you as I had to go through a bunch to get ones that I could function o, like even know where I was at. I don’t want to feel like that I have to know what I’m doing. I found out that most of the opiates really fogged me. Have you tried any of them yet? On top of all the face pain junk you are trying to fight you will sooner or later run into the “oh, it’s all in your head”. Well I’ve waisted enough of your time.

Best to you,

Wheels 4 legs said all that