My Fibro

PhillyRNtoBe · Jun 13, 2015

I think some people with chronic conditions that spend a lot of time at doctor's offices, going for all kinds of tests and in and out of hospitals begin to identify with their illness. It becomes a part of who they are.
I've seen it been identified as a badge of honor type of thing (think CA survivor), and also as a way to manipulate others with their neediness and refuse to take responsibility for themselves. They project a "woe is me" attitude and hide behind their illness. Use it as a crutch to blame their (unrelated) shortcomings on. Not to pick on any certain illnesses, because I know they are real conditions that cause much suffering, but in my experience, the individuals that tend to "use" their illness to their advantage have been those with MS, anorexia, cystic fibrosis and certain psychiatric disorders.
Again, I feel for these people who I'm sure are just trying to cope with a chronic illness the best they know how. However, dealing with someone who uses their condition as a shield against the rules the rest of us must follow and who plays on the emotions and sympathies of those around them is exasperating at times.

It also depends what area you live in. Some people may disagree if majority of their MS patients never behave the way you are describing. Are you located in the city, suburbs, small town? It makes a difference if you are in a low income area or an affluent suburb. Your patient experience is much different than someone else's.

I know people who work in center city hospitals with every horror story you could imagine but girls who work in PA suburbs rarely complain about their MS and Fibro patients.

Maybe your area has more of a drug problem so you see more addicts? There are pockets of PA that have serious, and I mean serious prescription pill and heroin problems. It's to the point that hearing about drug OD's is the norm. The economy in PA sucks, lots of job competition and some people just give up on life. I have empathy for them because some people have difficult lives.

You might have been making an observation about your experience which is fine but I think you needed to word it in a way that doesn't seem like you might be stereotyping MS patients. Or any patients really.

I Observe · Jun 13, 2015

I have two chronic conditions that are not visible so I understand all about that; however, I have also have had to deal with enough severe hypocondriacs and attention seekers that I cannot remove from my life enough to understand the OP's point of view.

Unfortunately, they make life harder for people who really suffer from diseases. I know several people who quietly deal with fibromyalgia and I do believe in it. It's also true that every hypocondriac I know claims to suffer from it too. I can usually tell which I am dealing with in about 30 seconds.

Oceanpacific · Jun 13, 2015

Iobserve, Thanks for sharing and I am sorry for your pain. I guess what I did not get across well is that I think, unfortunately, there is a sizable population of patients who are scamming us all by feigning these diagnoses just because the diagnoses are in many ways subjective and ill-defined.

I wish those of you in pain my best wishes for more good days than bad days.

For the scammers, it is not a victimless crime. Real suffering is occurring amongst people that are being marginalized and doubted because of able-bodied scammers.

CCRN2BE · Jun 13, 2015

I'm going to attempt to elaborate and explain my position once more. If this fails, I give up :dead:

I make it a point to remain objective and base my conclusions on what I observe. In regards to my position as a nurse, I do not approach patients with "those illnesses" based on what I was told in report or what I've heard they're like. I have found on many occasions that the way in which a patient is described (they're whiny/difficult/rude) to me by the off going nurse and what I find to be true are completely opposite. I have noticed that often times the nurses who themselves are rude and small minded and who "expect" a certain behavior from the patient actually elicit those exact unsavory behaviors by approaching the patient with preconceived notions. I don't even think they realize they are doing so most of the time. If a nurse has decided what the patient is like before even stepping foot in the room, they are likely to find exactly what they expect to find.

Someone mentioned VIP patients. How someone can attack me for my opinion and yet at the same time contradict the entire point of their own stance is baffling to me :confused: So what you're saying is that you understand how VIP patients can be taxing to deal with because of their demands and attitudes (read: stereotype) but you can't understand how it can be taxing to deal with chronic illness patients and their demands and attitudes? So, if these two types of patients display the same behaviors such as feeling entitled and being manipulative of others, it's okay for the chronic illness patients but not the VIP patients??? Please explain your reasoning because I'm not following you. It seems you are just substituting one sterotype for another.

From my experience, there are rude, self absorbed rich folks and there are kind, reasonable rich folks. Just like there are rude, self absorbed folks with chronic illnesses and there are kind, reasonable folks with chronic illnesses. Why should one group's obnoxious and inconsiderate behaviors be tolerated and justified while the other group is held accountable for theirs?

Perfect example: I recently took care of a patient suffering from one of "those illnesses". He was rather young and sadly has had many integral life experiences that are often taken for granted (marriage, children, career) stolen from him by the effects of his illness. He relentlessly probed me for personal details of my life and repeatedly made inappropriate comments to me. Now, I get that he is mourning the loss of some very vital aspects of life that he has been forced to forfeit through no fault of his own. I was kind to him and expressed to him that I realize that his situation must be very difficult to deal with. HOWEVER, I don't agree that he has the right to make others (i.e. me) uncomfortable by behaving inappropriately to get what he wants (my personal life details) simply because he has the illness he does. He was attempting to use his illness to his advantage to get what he wanted by trying (unsuccessfully) to play on my sympathy (i.e. manipulation). He was A/O with no cognitive deficits so mental status was not a factor. Yes, I feel for his situation and what he's experiencing, but I don't agree that I should be expected to condone his behavior either. I wouldn't tolerate it from a VIP who employed similar tactics and I won't tolerate it from him. The VIP attempts to use their wealth and status to get what they want, and this man attemtped to use his illness and unfortunate circumstances to get what he wanted. Neither are okay in my book.

Anyone ever seen the movie about Helen Keller? As a young child, she was extremely unruly and behaved atrociously. She had absolutely no social skills or manners and you know why? Because her parents felt sorry for her and had virtually no expectations of her. She lived up to their expectations which made her almost unbearable to be around. Then along comes her teacher, Annie, I believe her name was, and she transformed this deaf and blind girl into an amazing young lady because she held her to higher standards and expected more from her.

So, there's my two cents to the "I can't believe a nurse just said that" and "I did not just read what I think I did" posts. Yes, I am a flesh and blood nurse...one who happens to herself suffer from a life changing illness and yet still doesn't condone crappy behavior by people who should/could know better. And to clairfy....I do not mean everyone who may have one of "those illnesses", I refer to those who knowingly use their shortcomings to their advantage to get their way in situations where their behavior would not be tolerated if it weren't for their illness.

blondy2061h, MSN, RN · Jun 13, 2015

I was a counselor at a summer camp for many summers throughout high school and college. We would get a few campers there all summer. A subset of these campers were wonderful kids who simply had a strong desire to stay active and busy all summer. A larger percentage of kids that were there all summer were there because their parents needed a break from them, so you can imagine what those kids were like.

I remember one Sunday morning I was looking over my list of campers for the week. Another staff member came by and groaned, "Oh no, you have Shirley in your cabin this week! She's a little demon! Good luck to you." I near panicked right away. My director came over to me and essentially said exactly what CCRN2BE is saying. Pretend I never heard that. Every week these girls should have a chance to have a clean slate. Treat her like I expected her to be nothing less than an angel. I did that, and save for a few minor hiccups, we had such a pleasant week I barely remember anything about it after that first conversation.

When I became a nurse I quickly realized the same principle applied. It was so easy to form an opinion of a patient reading their chart, getting report, reading the medical sign out, even looking at their diagnosis and allergy list. Even thinking about previous shifts you've had with that same patient isn't fair. It only makes you dread work and puts the patient in a "can't win" scenario. Every shift should be a fresh start for the patient.

Of course I had my share of difficult patients and campers along the way. But now I tell myself at least I can go home after 13 hours, vs needing to survive 6 days of very frequent togetherness with tough campers. I could probably write a book about the ways camp has prepared me for nursing, but I'll leave it at that for now!

CCRN2BE · Jun 13, 2015

Oh, yeah...having cancer is blast. I just love having a handicapped placard so I can get a better parking spot that those slobs who don't cave CA. Being able to use having cancer to get bennies non-cancer individuals don't get makes baldness and getting sick from chemo totally worth it.

Maybe you didn't read my 2nd post? I too love the dirty looks I get for using my handicapped placard when I look perfectly normal but my heart is functioning at a subpar level. I too love having to take multiple medications usually reserved for the elderly. I too love sitting in my cardiologist's office getting weird looks and it's not lost on me that I am the only person there under the age of 60.

I too am SMH....at the quickfire responses of some very easily offended posters who take what they want from a post to light their "Oh, no you didn't!!!" fire and disregard the parts that don't fit their accusations :no:

CCRN2BE · Jun 13, 2015

It also depends what area you live in. Some people may disagree if majority of their MS patients never behave the way you are describing. Are you located in the city, suburbs, small town? It makes a difference if you are in a low income area or an affluent suburb. Your patient experience is much different than someone else's.
I know people who work in center city hospitals with every horror story you could imagine but girls who work in PA suburbs rarely complain about their MS and Fibro patients.
Maybe your area has more of a drug problem so you see more addicts? There are pockets of PA that have serious, and I mean serious prescription pill and heroin problems. It's to the point that hearing about drug OD's is the norm. The economy in PA sucks, lots of job competition and some people just give up on life. I have empathy for them because some people have difficult lives.
You might have been making an observation about your experience which is fine but I think you needed to word it in a way that doesn't seem like you might be stereotyping MS patients. Or any patients really.

Thank you for your post. You obviously took the time to actually put some thought into your reply before responding. I agree and I said that what I have observed has been MY experience. I'm getting tired of defending my opinion, it's mine and I own it. For those who think I am awful for being honest, that's fine but these have been my experiences with patients with the mentioned illnesses. I never meant to imply that I was referring to ALL patients with certain illnesses. I obviously should have been more clear.

I'm a realist and I call it like I see it. If others choose to wear blinders and act like certain behaviors aren't sometimes associated with certain disorders, so be it.

We were just discussing at work how many (NOT ALL) patients with COPD display similar behaviors or characteristics - nervousness, anxiety, restlessness. Completely understandable as they are constantly fighting for air. It's just an observation many of us have experienced. Nothing more, nothing less.

I can think of a few other illnesses that have associated typical behaviors. Did I invent the connection? No. Am I the only person to ever notice the connection? No. Am I to be expected to be okay with being manipulated, taken advantage of, harrassed or otherwise treated poorly because I should feel sorry for the patient and excuse their behavior on account of their illness even though they are capable of knowing better? NO!

ktwlpn, LPN · Jun 13, 2015

I recently had a patient refer to her fibromyalgia diagnosis as "My Fibro". Kind of like it is an entity with which she has a relationship.
I realized that I had heard that term a lot, but really don't hear "My Hypertension", or "My Obesity".
What's up with that?

vs " I've got THE fibro" "my cold" "my arthritis" etc....One does not say " I have the constipation"

ktwlpn, LPN · Jun 13, 2015

Thank you for your post. You obviously took the time to actually put some thought into your reply before responding. I agree and I said that what I have observed has been MY experience. I'm getting tired of defending my opinion, it's mine and I own it. For those who think I am awful for being honest, that's fine but these have been my experiences with patients with the mentioned illnesses. I never meant to imply that I was referring to ALL patients with certain illnesses. I obviously should have been more clear.
I'm a realist and I call it like I see it. If others choose to wear blinders and act like certain behaviors aren't sometimes associated with certain disorders, so be it.
We were just discussing at work how many (NOT ALL) patients with COPD display similar behaviors or characteristics - nervousness, anxiety, restlessness. Completely understandable as they are constantly fighting for air. It's just an observation many of us have experienced. Nothing more, nothing less.
I can think of a few other illnesses that have associated typical behaviors. Did I invent the connection? No. Am I the only person to ever notice the connection? No. Am I to be expected to be okay with being manipulated, taken advantage of, harrassed or otherwise treated poorly because I should feel sorry for the patient and excuse their behavior on account of their illness even though they are capable of knowing better? NO!

But you can't judge every patient because if the actions of a few and that's the danger in believing in those stereotypes.

CCRN2BE · Jun 13, 2015

Oh, yeah...having cancer is blast. I just love having a handicapped placard so I can get a better parking spot that those slobs who don't cave CA. Being able to use having cancer to get bennies non-cancer individuals don't get makes baldness and getting sick from chemo totally worth it.

Also, when I mentioned cancer and how some survivors wear it as a badge of honor, I meant that in a positive way. I meant it is as they view their illness as something they are stronger than and have overcome. They chose to fight and not be identified by their cancer or use it as an excuse for poor behavior like SOME people with SOME illnesses do....NOT EVERYONE with certain illnesses. My mother is currently battling cancer....I get it, I really do.

And I'm sorry, I'm really not making this stuff up...I find it hard to believe that some are acting like I am the first person to ever make these observations. It is what it is....I didn't invent it.

Tenebrae, BSN, RN · Jun 13, 2015

I've got to say, if I'm being honest, that I do have some bias against diagnoses such as chronic fatigue syndrome and fibromyalgia. To me, it is a little like the concept of "First World Diseases". I know young people my age or younger with some of these diagnoses who are disabled from work, yet, hello, they are out doing vigorous leisure activities in the community. They are like little energizer bunnies, but are too ill to work.
After 33 years of being a nurse, I feel exhausted at the very thought of going to work, but I'm solo and don't have a financial safety net so I just keep working.

I have fibro

I tend to spend most of my leisure time sleeping to recover from working full time.

Apparently I'm doing it wrong.

:)

Tenebrae, BSN, RN · Jun 13, 2015

Fibro is an imaginary illness to a lot of medical professionals and another route for some to "drug seek".
At least that's the gist I get from reading some ER blogs and from some of the posts I've seen here.

Which is ironic really because there is minimal evidence to suggest that the drugs worth seeking over actually have much benefit for people with fibromyalgia