Unapparent disability

Hi Jay,

What you say us true, but in the case of my wife we are dealing with disability.  She appears normal at first encounter. Her body is dx as cancer free.  The cancer only comes into play in that she had it recently, and she and I are well aware that, stat wise, cancer will reappear in the next 10 years or so.
So, in a twisted sense, she is not bargaining with death … she is bargaining with life.   Like Pearl, she is dealing with all of the “ slings and arrows of outrageous fortune”.

Hi Jay,

Yes, quality of life.  There is an individual I keep in casual contact with. He has serious long term health issues. He was miserable.   I sat down with him one day and discussed trade offs and quality of life.  I steered my conversation in the direction of providing  information on decision making rather than discussing his condition.   He got the point.  His medical tests are staying in the normal range, but he has lightened up to a considerable degree. He comes off as much happier.  

Wow!  This thread filled a page fast.  30 years ago I made a career change to deal with my unapparent disability.  A career to help others with unapparent disabilities.  Medicine is content to give you a diagnosis which is usually just a description of your symptom written in medicalese as an excuse for prescribing a medication.    Seldom do they dig down to find the cause of the symptoms which would give one the chance of correcting or avoiding the disabling symptoms.  Many here have cascading symptoms.  Illustrative term because falling water pulls on the water behind it making it go faster.  The body calls on alternative actions when the ideal one is disabled.  The alternative is not as efficient therefor wares down to disabled which calls for another alternative  which wears down continuing until collapse.  
Over the years of digging into the history of my symptoms  I found the major cause was a blow to my spine at the bottom of the ribs laving scar tissue between the spinus processes.  Over time motor vehicle accidents added deficits to alterative movement pathways making the cascade more rapid.  Further complicating factor is the collapse infringes on the nerves regulating digestion so getting the nutrients for the  recovery is delayed.
Knowing the cause and the methods of alleviating the cause I can start the recovery prosses before it becomes a cascade which shortens the recovery time.  Most doctors do not have the knowledge and experience to find the cause of an individuals syndrome.  They have had to devote most of their education to learning to match symptoms to medications.  So if you have a diagnosis that ends with itis, osis, or algia they are just saying you have irritation, swelling . and pain.  An arthrose is a joint; I am not allowed to put one of the modifiers on it because my license dose not allow me to make a diagnosis.  I am allowed to make an assessment of conditions that that may be leading up to the symptom and physical actions that can be taken to stop the cascade.  
My fellow sufferers are welcome to use the links in my signature line to ask for a virtual visit by video link to see if I can direct you to trace the symptom back to the cause and share practical methods of avoiding the disabling cascade.

Hi Pearl,

My wife went through a similar game with health care. For years her back pain was regarded as being in her head.    We went to the usual collection of doctors.  Those records often had a variety of insulting comments.  Anyway, the CT Scan was invented … 4 ruptured disks.

It doesn’t help that there is a problem going on with people either pretending to be disabled or they are just weak willed and have no actual disability but they believe they do. These actions make people skeptical about the ones with a real unapparent disability.

Another one is hearing loss. People get so mad when you keep asking them to repeat, or speak louder.

Some hints if talking with someone with hearing loss.
Attract their attention before speaking.
Face them directly.
Speak clearly and a bit slowly.
If asked to repeat, repeat EXACTLY word for word what you said before, if possible.
Don't bother talking if there is background noise and if you are in a different room. If it's important enough that they need to hear you, it's important enough for you to walk into the same room with them.

Thom Bri wrote:If asked to repeat, repeat EXACTLY word for word what you said before, if possible.

It's so frustrating when they decide you didn't understand, so they try to rephrase it more simply. It's like "no, I just didn't hear the third and sixth word and if you could say those two, we'd be good..."

The standard advice out there is to paraphrase….this is coming from well placed people in audiology circles. Indeed, the Illinois Department of Human Services recommends using different words if the first message is not understood.  I always taught my staff to use the same words at least 2 more times.  After that, try different words.

Too often the problem is as much with the speaker as it is with the listener.  

Also, if you are speaking with a person with a hearing disability, try to use fewer words.  We all know the person who never uses 3 words when they can use 50.  This is torture for a person with even a moderate hearing loss.  

Roughly 5% of the population can accurately lip read.  This is not to say it doesn’t work as a good assist.  Also beards, mustaches, lip rings, etc all get in the way.   Besides, many words and phrases have similar mouth movements. “Vacuum” and “F..k you” have similar mouth movements.

If a person with a “corrected” hearing loss always seems to have problems hearing, look into aphasia.  They may be processing something quite different that what you are saying.  

Many people equate the benefits of hearing aids as being similar to eyeglasses.   Hearing aids can help, but they are a long way from being equal to eyeglasses.

Hearing aide sales people sell hearing aids.  Audiologist perform testing.  To make a point, Back in the early 90s I had an employee who obviously had a hearing issue.  I told him to get to an audiologist or an ENT .   I stressed that his first visit should not be with a hearing aide sales person….because they sell hearing aids.  I gave him information on the names and phone numbers of audiologists and ENTs.

A couple days later, he showed up at work with a very expensive hearing aid in each ear.  Two years later his jaw was removed because the tumor had spread. Three years later, he was dead.

I am not anti hearing aid sales people.  I have two hearing aids. But do not expect anyone to perform a function they have no training to do.  Hearing aid sales people tend to not look for underlying causes….nor are they trained to.

Nick Mick wrote:It doesn’t help that there is a problem going on with people either pretending to be disabled or they are just weak willed and have no actual disability but they believe they do. These actions make people skeptical about the ones with a real unapparent disability.

How are you able to judge whether a person’s disability is “real” or not? How do you know better than they do whether they are truly suffering or just believe that they are? For that matter, what is the difference between truly  suffering and just believing that you are suffering?

I ran into the "pretending" issue when I was on disability.   Make no mistake, I was not pretending, but this did not stop insurance to think that I was.  Eventually, they stopped payments.  The problem of course was that I my insomnia had not budged one inch.  Somehow I was just supposed to go to sleep now and wake up rested.  Payments were dropped (I was working under a part-time return to work program) and I continued to work one school period per day for years, not really earning anything.  The district refused to believe that I was *NOT* disabled.  It was a truly frustrating time of my life.

Eric

Mk Neal wrote:

Nick Mick wrote:It doesn’t help that there is a problem going on with people either pretending to be disabled or they are just weak willed and have no actual disability but they believe they do. These actions make people skeptical about the ones with a real unapparent disability.

How are you able to judge whether a person’s disability is “real” or not? How do you know better than they do whether they are truly suffering or just believe that they are? For that matter, what is the difference between truly  suffering and just believing that you are suffering?

1. I am not able to judge whether a person’s disability is real or not (unless I know them/unless they have been ‘caught’ faking it). I’m merely pointing out an unfortunate fact about how some people do indeed ‘fake it’ and that makes it difficult for the people who are not faking it.
2. I do not know better than the individual(s) in question as to whether or not they are suffering, that is for them to figure out. Suffering, in general, is a temporary part of life and is necessary for growth. Unless the suffering becomes permanent then it could become a disability, but that is just an opinion.
3. The difference between truly suffering and just believing that you are suffering (from a mental health view) is the difference between reality and emotion. Emotions are just that, they have no effect to the world at large unless you let them. There is also the issue with perception. As for physical suffering one can easily be temporarily disabled from an injury that no one can see, but unless its chronic there needs to be a point where the individual needs to stop believing they are suffering and move on with their life. Same goes for mental.

I probably butchered that response, but it’s just opinion anyway.

Nick, I understand what you are trying to say.  In fact, it is those who fake that made my payments stop prematurely, so definitely you have valid points.

Eric

People do pretend …some of the people …some of the time.  I find the various providers much more likely to declare a fake than to actually find a fake.  Often, at most, it is a problem of degree. People sometimes exaggerate because they want to be taken seriously.

An older lady in an ER calmly told me her pain was a 10.   I asked her if it was worse than childbirth … no. I do think she was in pain ..she just felt the need to exaggerate a tad.

I did treat a young woman who stated she had a convulsive disorder.  I found out she had told her doctor I was present when she had a seizure.  I wasn’t.   I casually confronted her. She insisted I had been present. So I asked her where she was when the seizure happened ….in the bathroom.  I asked her if I was in the bathroom with her …no.   With a little research we learned that 100% of the time her seizures took place when she was alone.  In her case, I suspect she never had a seizure and knew she was faking.  Now, this does not mean she did not have some serious issues.

Hi Eric,

This goes outside the theme of Unapparent Disabilities, but ….

It was sometime in March many years ago. I was with an employee of mine at the edge of a driveway near a state highway. It was maybe 7am.. A vehicle drove up. The passenger door opened, and a child ran out of the car onto a patch of grass and toward the highway.  My employee responded much faster that I did, she ran across the grass to get between him and the highway.  Of course, there was a thin sheet of ice on the grass.  She went down and broke both legs.  Yes, they were very broken.

The insurance company called me and told me she was faking it.  And they threatened me ( well beyond anything legal) if I did not mandate her back to work.  To be kind …let’s just say I exploded.  And yes, we changed insurance companies.

Chronic pain/illness patients have a weird issue with attempting to communicate with medical people, quite a bit because we have learned to cope and hide it, quite a bit because we are not listened to. My "normal" body temperature, when I feel best, don't feel sick etc, is 95.4. I go to the doctor because I'm sick, the tech takes my temp at 98.2, say "that's close enough" and I say "My normal body temp is 95.4, that's the same as temperature of 101.8. I have a fever." and they just look at me, and don't seem to mention it to the doctor.

I tracked my body temperature at one point for several months, several data points a day, including what I was doing at the time, and it never went over 96. I showed that to several doctors, no one cared. One looked at it, said "Good! You don't have a fever!" and handed it back. The worst was one day I felt horrible, took my temperature, 92.3. I rechecked it with every thermometer I had. I looked it up on a forensic medical chart, it said I had been dead for 3 hours and 20 minutes. I told the doctor about this. He said there was no way that was right. I had brought in a couple of my thermometers and checked them against his, they were accurate, he didn't care, it couldn't happen. Personally, I thought that was a symptom that would have interested him, definitely said SOMETHING, I just don't know what.

So when you deal with stuff like that, it's HARD to communicate pain levels, which is more subjective than temperature. I tend to give my pain as two numbers, Chronic and Acute. As I type this, my Chronic pain is about a 4 but the Acute is about a 6, as I have infections running and I did too much work the other day. They are very different numbers to me, and the techs who are filling out a form on the computer want ONE number. "Are you in pain?" "Yes, but I always am, I'm a chronic pain patient, no acute pain today though."  "On a 1-10 scale how would you rate it?" "A 6, but that's my chronic pain, there's nothing acute today." They write down 6, and the doctor thinks I'm in acute pain.... We go through this EVERY TIME I go to a doctor. The system isn't made for people like me.

And when I DO give them a number, as far as I can tell, my scale is different than most people's simply because I'm used to pain AND I know how bad it can get. I have never gotten to what I'd classify as over 9.0, even when I couldn't walk at all due to pain, because I KNOW there is a lot of pain past that. On my scale a serious migraine with auras and vomiting that has held on for 3 days is a 7.5, as I have had much worse pain than that. I disagree with anyone who claims a 10, at 10 there would be no way I could speak coherently or answer questions. How do you explain this to people if they won't listen? How do you communicate when you are not on the same page?

One of my all time favorite XKCD cartoons sums it up::

Excellent point Pearl. As we age, our body temperature drops. Body temperature becomes less of an indicator of having an infection.  I know of one case where a gentleman in his 80s was being given tranquilizers because he was thrashing around so much. It turned out his WBC count was through the roof.

I never know what number to tell them about my pain. Here's the policy I've come up with. I once tore something in or around my ribs (it was never diagnosed properly) and that set the new bar for pain for me. However, I figure I've had a relatively lucky and uneventful life, so my max pain can't be anywhere near a 10. I figure that tear that I mentioned is a 7. So when my back hurt so much I could barely walk two weeks ago and I had to go get muscle relaxers to manage the spasm, it was awful but nothing like that 7, so I told them a five. But they saw me hobbling around and wincing and thought I should have said a higher number. "I don't know...it hurts, give me drugs!"

Christopher Weeks wrote:So when my back hurt so much I could barely walk two weeks ago and I had to go get muscle relaxers to manage the spasm, it was awful but nothing like that 7, so I told them a five. But they saw me hobbling around and wincing and thought I should have said a higher number. "I don't know...it hurts, give me drugs!"

Thus the lady in John F Dean's post who said it was a 10. She MEANT "I seriously HURT, PAY ATTENTION to my pain!"
There needs to be better words.

I've had knee issues since a sports injury, and have dealt with pain for most of my adult life. It's mostly been frustrating and limiting. I became aware a couple of years ago that I have inadvertently trained myself to have an unusually high pain tolerance. I chopped a chunk of a finger while cooking, and a family member who is a Dr patched me up. She was pretty surprised that I was basically just carrying on with little more than an occasional wince.

I'm so used to just getting on with stuff while in pain that it takes something pretty substantial for pain itself to impact me. It has happened once over the past few years, when something went wrong in my knee. I was holding it together, but hadn't really slept for a few days, was trying to carry on working (teaching), but struggling to get around the site. Someone sat with me at lunch and asked how I was getting on and I just sort of crumpled. I ended up crying over my lunch and was sent home and told not to come back until I was recovered. I had 2 or 3 weeks off my feet before I felt well enough to be up and doing stuff.

Anyway, I've carried it for years. It's always there in the background. It impacts my decision making when planning what I can and can't do. It slows me down when I have a bad day/week... but if you don't know it is essentially invisible.

More recently, I have made some progress towards "fixing" it, which I am super excited by. I've posted that elsewhere so as not to derail this.
Physios are magic

Pearl and I hurt differently, but think about it similarly. When they ask for my pain level, I often asked (yup, past-tense, because I just don't bother going, anymore) "which thing?" My overall chronic pain might be at *my idea* of a 5, at the same time my right knee might be at a 7, the left at a 9, my right shoulder at a 3, and my left at an 8.

The 'worst' pain I can imagine was the rupture of an ovarian cyst, and far worse than child birth. It hospitalized me for 10 days, and regular, maxed-out doses of intravenous morphine didn't touch it. I kept the room dark, & was so cold they couldn't pile enough blankets on me, and was barely coherent, and even screamed bloody murder, during an exam. For perspective, I had 2 of my 3 babies with no pain meds. Physical pain rarely elicits my tears, though emotions can bring them on far too easily for my liking.

For a while, I took this one with me, but most of the doctors thought it was a joke.

It doesn't always work, but when I'm facing that scale o pain nonsense, I'll start by giving the asker a couple of reference points. Give reference points, and if you've been crying from the pain or unable to sleep or passing out from it, tell them that. Usually by the time I explain how breaking my leg bones in several places was maybe a "two" and dislocating my shoulder and popping it back in is a "three" and what "ten" means to me and yes I have experienced that, they look a bit more... understanding. Or queasy? I make it clear I'm there to get something x-rayed or a muscle relaxer, maybe a PT referral. I'm not interested in pain meds, all they do for me is mess up my guts and make it harder to think.

I've used oversharing as a tactic when people think I'm not suffering enough to need whatever it is I need. I'll offer to show them the scars, start talking about how much something bled or what it smelled like, that kind of stuff. Poo and vomit too! If it's the dread fatigue, I'll flop down on the floor and start up a long monologue about what I went through doing some simple task like trying to wash my hair. If I'm grumpy enough to resort to this, they're darn well going to either feel some empathy or at least discomfort!

My regular docs understand me pretty well. I'm pretty happy with my current team. Most of the snap-judgement sorts of people aren't going to help anyway, it's better to chase them off. Maybe their coworker is a kinder human being, or they'll give me what I need just to make me go away!

As a heath care professional I understand pain scale numbers are only valid in relation to that person.   " before we start how would you rate this pain on a 0 to 10 scale?"  After the session "How would you rate the pain on the same 0 to 10 scale.  Current pain science is emphasizing that what the client feels is not what you feel.  The symptom is not the disease.  The sum of subjective [what you say about your condition] symptoms and objective findings [what the practitioner finds] my lead to discovering the cause and solution.  Sadly it is not always posible to go to another provider that believes you know mor about your health than they do.  However that is what modern pain science indicates so advocate for yourself; be a client, don't let them force you into being a patient waiting on them. [Did you ever wonder why they want to refer to you as a patient?}

John F Dean wrote:The standard advice out there is to paraphrase….this is coming from well placed people in audiology circles. Indeed, the Illinois Department of Human Services recommends using different words if the first message is not understood.  I always taught my staff to use the same words at least 2 more times.  After that, try different words.

I am familiar with this advice, and think it is dead wrong. Often the problem is one word. If I can get that one word I understand the whole sentence. If you say something different I am starting all over again.

Thom Bri wrote:

John F Dean wrote:The standard advice out there is to paraphrase….this is coming from well placed people in audiology circles. Indeed, the Illinois Department of Human Services recommends using different words if the first message is not understood.  I always taught my staff to use the same words at least 2 more times.  After that, try different words.

I am familiar with this advice, and think it is dead wrong. Often the problem is one word. If I can get that one word I understand the whole sentence. If you say something different I am starting all over again.

Ask before you jump to a conclusion.   Often it is the first word which may be the subject word.  not knowing the subject often makes a question or request unanswerable.

Gosh, after reading all of your posts, I feel lucky to have a very apparent condition (right hip disarticulation at age 23) I've been this way for 50 yrs. I've had a successful career and a very successful farm business, My wife and I have launched four successful kids into the world.
I couldn't bear to have a handicap sticker, placard, or plate unless I really needed it, which I don't yet. Sure, I hurt in several places (shoulders, ankle, wrists) but I've crutched to the summit of Ibapah peak and a lot of other places that are hard to get to. I get asked fairly often why I don't use the handicap parking. Other people need them more than I do. I encounter people every day who are way worse off than me, whether their condition is apparent or otherwise.
By the way, I prefer the term crippled over the term disabled. I am totally able so far.  

I couldn't bear to have a handicap sticker, placard, or plate unless I really needed it

One thing to keep in mind... If you have one, you don't have to use it. If there are days when you're not doing things you need to do, or dread doing them, and the placard would help? Get one. When I have one, it mostly stays in the glove-box.

Thank you for the good advice. With the snow and ice, a placard might keep me from a serious slip and fall when crutching in from a hundred feet beyond the designated handicap parking. The rest of the time I can use the exercise anyway and it can stay in the glove-box.
 

I had a placard when things were bad. When I didn't need it, I let it go. I didn't use it when I didn't need it, but there were some days even that wasn't enough, I'd sit there and stare at the door, and I'd go back home, because there was no way I was going to make it into the store, and do what I needed, and get back out, even with being parked close.

I suspect that people who can afford it are happy that they can pay for delivery of things like groceries these days. Wasn't an option then (not that I'd have been able to afford it.) Covid did at least have that good effect.

One serious problem with the designated parking is that, by definition, they are in high traffic areas. People who have trouble twisting their bodies and necks have problems backing their cars out.

Yes. One store I went to at one point soon after back surgery had pull through handicap parking, I liked that.
I always use curved rearview mirrors, and I tend to install towing mirrors on my cars for bad days.  

Back in 2017, when I still had three pt time jobs I landed a great deal on a car with all features like 360 cameras , 360 radar, etc.   but I am amazed at the number of people, cell phone in hand, who will walk directly behind me while I am backing up.  And yes, the pull through parking spots are great.

John F Dean wrote:One serious problem with the designated parking is that, by definition, they are in high traffic areas. People who have trouble twisting their bodies and necks have problems backing their cars out.

I was a grocery store in California last week, and they had handicapped spots that were oriented perpendicular to the rest, so no backing out, and the loading zone is protected by your parked car.

Pearl Sutton wrote:

Christopher Weeks wrote:So when my back hurt so much I could barely walk two weeks ago and I had to go get muscle relaxers to manage the spasm, it was awful but nothing like that 7, so I told them a five. But they saw me hobbling around and wincing and thought I should have said a higher number. "I don't know...it hurts, give me drugs!"

Thus the lady in John F Dean's post who said it was a 10. She MEANT "I seriously HURT, PAY ATTENTION to my pain!"
There needs to be better words.

I totally agree, Pearl - there needs to be a better way - or training - my PCP has a chart with descriptors under each number in her exam rooms - trying to help people give them an accurate number - now she is one of what I have seen lately as one of the minority - she actually cares and wants to help. I had a back injury at 16. ER wanted to send me to a surgeon to fuse the lower 3 vertebra. Dad said NO.
I never stood up straight again, until age 35. (that fix is another story)
 I got tired of the pain meds by 18, and wanted to be functional enough to enjoy life. pain meds were taking away my quality of life, and so I learned to deal.
2 1/2 years ago, I was in a bad highway speed motorcycle accident that pretty much destroyed me physically - apparently my PCP was in a wreck the same week - but a few months later I hobbled in with a walking stick to keep my balance, and wanted her to tell me why my left leg and especially ankle (one of the distractive injuries on the big day) didn't seem to be getting better.
the nurse pointed to the chart, and asked me where I was. I told her probably 7.
 when the Dr came in, she asked why I chose that number - and I told her it was because I can't even stay focused reading - the pain knocks the thoughts out of my head. she told me she wanted a better system, as she struggled with being on the other side of it as a patient for her ordeal. she then told me that it is all subjective - for the patient and the care provider, and she also said that as soon as someone says 12, then they just have to assume they are exaggerating, as 12 comes after 10 and isn't on the chart.
she knows me well enough that she recognizes my laughs and attempts at humor are how I deal with being nervous or hurting - and yet her nurse assumed I was just trying to get pain pills. there is part of the problem.   I refused them at the ER, and it was on my file - and I wasn't asking for them at that visit.
a better system would sure be nice, but then all of us need to follow the same system........and pain is obviously not the same for everyone. my assumption on the current system is if it is a 10, one wouldn't be able to tell them. but how long does one have to live at 8 or 9 before 10 doesn't seem as bad as it should?
what I run with now - I just tell them (if it is what is going on) that it hurts enough I can't relate it to a number. if it is below what I would call a 5, I probably wouldn't be in front of them.

Hi Rob,

When asked to identify my pain on the scale, I always explain what the scale means to me.  10 means I have passed out, 9 means screaming, etc.
Actually, the providers I know use it for relative purposes. That is if yesterday you said 7 and today you say 5 then you are improving. It doesn’t mean too much to them unless you choose near the top of the scale and demonstrate symptoms.

 I just tell them (if it is what is going on) that it hurts enough I can't relate it to a number. if it is below what I would call a 5, I probably wouldn't be in front of them.

As a therapist that is what I want to hear.  Record keepers want a short cut.  In the group practice I was in the instruction was 10 is where you started where are you now and above 10 is acceptable.  That allows one to have a meaningful personal reference and the practitioner to know if they are making progress.

unfortunately, this really explains why no one is happy with the system. between the three of us, we have three different scales.
I wouldn't have a number for unconscious, but I don't remember any pain until after they drug me out of the morgue and I came to in ER being x-rayed. I don't usually end up in front of a doctor on any kind of a regular basis.
Since I was in a lot of pain from 16 to 35, I was already well acquainted with just dealing with it.
I will say that since I found pain pills unacceptable, I did( Last 10 years) find that a good acupuncturist can work miracles. I am less impressed with western medicine - that has let the bean counters take over our care.

Hi Pearl,

I re read your post of 11/21 and you approach a key issue. For many people with disabilities, shopping is their primary, maybe only, source of socialization.   When I was much younger, it would irritate me when the little old lady in front of me would hold up the line chatting with the cashier.   I now accept it realizing that the brief conversation may be the high point of their week or month.

John: YES. The cashiers are sometimes the only people I see.
This is why I live on the net.
I hate to think how bad it would be if I didn't have at least this.

Pearl Sutton wrote:Chronic pain/illness patients have a weird issue with attempting to communicate with medical people, quite a bit because we have learned to cope and hide it, quite a bit because we are not listened to. My "normal" body temperature, when I feel best, don't feel sick etc, is 95.4. I go to the doctor because I'm sick, the tech takes my temp at 98.2, say "that's close enough" and I say "My normal body temp is 95.4, that's the same as temperature of 101.8. I have a fever." and they just look at me, and don't seem to mention it to the doctor.

I tracked my body temperature at one point for several months, several data points a day, including what I was doing at the time, and it never went over 96. I showed that to several doctors, no one cared. One looked at it, said "Good! You don't have a fever!" and handed it back. The worst was one day I felt horrible, took my temperature, 92.3. I rechecked it with every thermometer I had. I looked it up on a forensic medical chart, it said I had been dead for 3 hours and 20 minutes. I told the doctor about this. He said there was no way that was right. I had brought in a couple of my thermometers and checked them against his, they were accurate, he didn't care, it couldn't happen. Personally, I thought that was a symptom that would have interested him, definitely said SOMETHING, I just don't know what.

So when you deal with stuff like that, it's HARD to communicate pain levels, which is more subjective than temperature. I tend to give my pain as two numbers, Chronic and Acute. As I type this, my Chronic pain is about a 4 but the Acute is about a 6, as I have infections running and I did too much work the other day. They are very different numbers to me, and the techs who are filling out a form on the computer want ONE number. "Are you in pain?" "Yes, but I always am, I'm a chronic pain patient, no acute pain today though."  "On a 1-10 scale how would you rate it?" "A 6, but that's my chronic pain, there's nothing acute today." They write down 6, and the doctor thinks I'm in acute pain.... We go through this EVERY TIME I go to a doctor. The system isn't made for people like me.

And when I DO give them a number, as far as I can tell, my scale is different than most people's simply because I'm used to pain AND I know how bad it can get. I have never gotten to what I'd classify as over 9.0, even when I couldn't walk at all due to pain, because I KNOW there is a lot of pain past that. On my scale a serious migraine with auras and vomiting that has held on for 3 days is a 7.5, as I have had much worse pain than that. I disagree with anyone who claims a 10, at 10 there would be no way I could speak coherently or answer questions. How do you explain this to people if they won't listen? How do you communicate when you are not on the same page?

One of my all time favorite XKCD cartoons sums it up::

I quoted the whole thing because it is all stuff I see every day as a nurse. Especially that cartoon at the end. People who are rarely in pain will rate any severe new pain a 10, even if they can walk, talk, eat and converse. So, if they are the kind of person I can say this to, I ask them 'if I hit you with a baseball bat, would your pain get worse? If so, you are not a ten.' But, most people I can't talk to like this. I just give them whatever meds the doctor ordered and see if they work. If they don't, I ask the doctor for something stronger. People vary A LOT in how they tolerate pain and how well the meds work. Any pain 7 or above we give exactly the same meds anyway, so there is no point in telling a nurse you are at a 10.

Incidentally, chronic pain people can tolerate their own chronic pain very well, but oddly are hyper-sensitive to new pain, maybe because they are so sensitized to pain that their nervous system over-reacts. I don't know. Even just putting an IV into some chronic pain folks is a miserable affair, what with the jumping and jerking and cussing. Not all, but a pretty common observation among nurses.

As for your temp issues, lots of people run low. We know that and factor it in. But if the temp isn't dangerously high there isn't much we do except give a Tylenol or an ice pack. Your low temp was a very serious issue, probably an infection but who knows. However, if it was back to normal by the time you got to a doctor, what can we do?

Thom Bri wrote:

Pearl Sutton wrote:Chronic pain/illness patients have a weird issue with attempting to communicate with medical people, quite a bit because we have learned to cope and hide it, quite a bit because we are not listened to. My "normal" body temperature, when I feel best, don't feel sick etc, is 95.4. I go to the doctor because I'm sick, the tech takes my temp at 98.2, say "that's close enough" and I say "My normal body temp is 95.4, that's the same as temperature of 101.8. I have a fever." and they just look at me, and don't seem to mention it to the doctor.

I tracked my body temperature at one point for several months, several data points a day, including what I was doing at the time, and it never went over 96. I showed that to several doctors, no one cared. One looked at it, said "Good! You don't have a fever!" and handed it back. The worst was one day I felt horrible, took my temperature, 92.3. I rechecked it with every thermometer I had. I looked it up on a forensic medical chart, it said I had been dead for 3 hours and 20 minutes. I told the doctor about this. He said there was no way that was right. I had brought in a couple of my thermometers and checked them against his, they were accurate, he didn't care, it couldn't happen. Personally, I thought that was a symptom that would have interested him, definitely said SOMETHING, I just don't know what.

Incidentally, chronic pain people can tolerate their own chronic pain very well, but oddly are hyper-sensitive to new pain, maybe because they are so sensitized to pain that their nervous system over-reacts. I don't know. Even just putting an IV into some chronic pain folks is a miserable affair, what with the jumping and jerking and cussing. Not all, but a pretty common observation among nurses.

As for your temp issues, lots of people run low. We know that and factor it in. But if the temp isn't dangerously high there isn't much we do except give a Tylenol or an ice pack. Your low temp was a very serious issue, probably an infection but who knows. However, if it was back to normal by the time you got to a doctor, what can we do?

I think the reason we hyper-react to new pain is we are already keeping so many pain coping balls up in our day to day juggling, it's quite a balancing act, having a few more balls tossed at us tends to cascade the whole thing onto the floor, and you feel ALL of the pain you have been coping with.  It often feels like that, like a tower of jenga blocks, that is holding still RIGHT NOW, AS IS, but if you mess with it, the collapse is incredibly painful. It's NOT easy to keep it balanced enough to cope semi-normally.

Yeah, that super low temp was definitely an issue, and by the time I got to the doctor (the next day) I was back up to 94 or so, which is still too low, but that was deemed normal enough, since was wasn't SO LOW. I think it would have at LEAST interested them. What annoyed me was the disbelief, "You MUST have been wrong!" rather than saying "Well, you are still low today, perhaps we can figure something out about what goes on."