My Fibro

[Guest219794]

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?

[xoemmylouox, ASN, RN]

I think that for many with chronic diseases the disease becomes a large part of their life. They often refer to it as "my ___". I don't see it as anything bad. For many of those with chronic disease I wish that I could do more to help. My husband has several chronic issues and they have become a part of our every day life. I can easily see how it happens for others as well.

[Been there,done that, ASN, RN]

Have you heard the references, my heart attack, my mastectomy, my broken ankle?

These events are personal to the patient.

In a sense, it is a relationship. They deal with it every day.

Where's the problem?

[Mavrick, BSN, RN]

I may "have" something, but I don't want it to be "mine". If I "got" something, I don't necessarily want it. I am not inviting it to camp out, here!

I am very careful not​ to say "my" or "mine" when referring to something physical I'm going through.

It gives me the willies!

(just my 2 cents)

But they're your willies nonewtheless. LOL

[Mavrick, BSN, RN]

I don't believe what I just read came from the pen of a nurse. Patients with chronic diseases use it as a shield and a crutch to gain sympathy? Are you sure you're in the right profession? Wow...speechless. I'm speaking as a 22 year nursing veteran who suffers from a chronic debilitating disease......and I really hope you never get to suffer from one. Or perhaps maybe you should so you can gain some perspective. My chronic disease is incurable and painful, and impacts my life in every way imaginable, but still I manage to work full time, have a full life and go to grad school. Sometimes though, I can't keep up and sometimes I have to take pain meds and call out sick. Sometimes I even complain and whine a little, but until you've walked in these shoes and felt what it's like to have to live a very full and busy life while in pain and exhausted, it might be in your interests to keep your very ill-informed comments to yourself or you might just offend someone. Perhaps you should question your own bias when caring for your patients and try to feel a little empathy instead. Suffering from a chronic disease can exhaust the coping skills of even the most educated person, and some members of society have neither the coping skills nor the understanding to deal with the emotional toil and that manifests in behaviors that you find difficult to identify with. In those instances sympathy and empathy are far more useful tools than judgment and ridicule and as a nurse you might gain some perspective by reading a few research papers related to social and behavioral impacts of chronic disease. And yes, I have named my disease and the body part it effects as a way of injecting humor and identifying some kind of tangible enemy. Not everyone deals in the same way. This utter ignorance is frankly embarrassing.

You still doing bedside nursing much?

[CCRN2BE]

I don't believe what I just read came from the pen of a nurse. Patients with chronic diseases use it as a shield and a crutch to gain sympathy? Are you sure you're in the right profession? Wow...speechless. I'm speaking as a 22 year nursing veteran who suffers from a chronic debilitating disease......and I really hope you never get to suffer from one. Or perhaps maybe you should so you can gain some perspective. My chronic disease is incurable and painful, and impacts my life in every way imaginable, but still I manage to work full time, have a full life and go to grad school. Sometimes though, I can't keep up and sometimes I have to take pain meds and call out sick. Sometimes I even complain and whine a little, but until you've walked in these shoes and felt what it's like to have to live a very full and busy life while in pain and exhausted, it might be in your interests to keep your very ill-informed comments to yourself or you might just offend someone. Perhaps you should question your own bias when caring for your patients and try to feel a little empathy instead. Suffering from a chronic disease can exhaust the coping skills of even the most educated person, and some members of society have neither the coping skills nor the understanding to deal with the emotional toil and that manifests in behaviors that you find difficult to identify with. In those instances sympathy and empathy are far more useful tools than judgment and ridicule and as a nurse you might gain some perspective by reading a few research papers related to social and behavioral impacts of chronic disease. And yes, I have named my disease and the body part it effects as a way of injecting humor and identifying some kind of tangible enemy. Not everyone deals in the same way. This utter ignorance is frankly embarrassing.

I knew that was coming and I agree with others that you're reading waaayy too much into my post.

As a matter of fact, I do possess some "perspective". I was diagnosed in young adulthood with a serious cardiac condition that nearly took my life and placed limits on what I was able to do. I've had people give me dirty looks upon seeing me park in a handicapped spot because I "look normal". I've had pharmacists give me questioning looks when I pick up 6 prescriptions that usually belong to a customer three times my age. My youngest child learned to count to ten by helping me fill my weekly medicine container up with my various medications.

However, I didn't give up on life and use my diagnosis to justify all my shortcomings in life. I don't use it as an excuse and I rarely tell anyone about it because I don't want to be identified as my illess or given pity. The people I was referring to are those who are demanding, rude and manipulative simply because they have an illness and think they deserve special treatment. And let's be honest, there are people out there like that. I just don't believe in feeling sorry for oneself because of the hand you were dealt.

The world's not there to feel sorry for me or give me special treatment and I don't feel entitled to that either. In my opinion, your response to my post was misunderstood and maybe you should take your own advice since just because someone is not shouting it from the rooftops, doesn't mean that they don't have any perspective.

[blondy2061h, MSN, RN]

I have an interesting blend of chronic illness, including type 1 diabetes and some breathing issues. I definitely refer to them as "my illnesses" sometimes. They effect my body. And they effect me in a way only I can understand. And they're unique to me. Even amongst people with the same diagnosis, it effects everyone differently.

[CCRN2BE]

Please show us the post in which someone was laughing at dis-empowered, vulnerable folks.

I for one thought that the CCRN2BE's reponse was very carefully and thoughtfully written. And I thought that your initial response was way overboard and accusatory without cause.

Thank you and I am glad a few others were able to understand where I was coming from.

[Oceanpacific]

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.

[TheGooch]

That is my favorite smiley.

I don't have fibro, but my friends that do seem to go out of their way to make sure I know it is real. I've never questioned them.

My guess is that fibro patients have been questioned before and maybe actually are a bit defensive?

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.

[roser13, ASN, RN]

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.

I was leaning toward a little of that feeling until a very well-educated, highly regarded professional that I know was diagnosed with fibro by the Mayo Clinic. I then began to try to be a little more discriminative in my thoughts about certain diseases. There will always be malingerers, period. It may be that fibro gathers a disproportionate share of those malingerers simply because there is very little objective evidence such as x-ray, lab tests, etc to prove or disprove a claim.

[ThePsychWhisperer, BSN, MSN, APRN, NP]

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.

I must say that I personally had no opinion on fibromyalgia, be it real or imaginary, until being told by an ED patient that she had "stage 4 fibromyalgia with metz." I'll let my gentle readers determine for themselves which side of the fence I'm on now.

[Mavrick, BSN, RN]

malinger ma·lin·ger (mə-lĭng'gər)

v. To feign illness or other incapacity in order to avoid duty or work.

I am fascinated that there is a word for the behavior.

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