Sunday, June 17, 2012

when you become your "disease"

It never ceases to amaze me how some people choose to live their lives. They are miserable people. FOr some reason, they can't express their misery which usually takes the form of depression and a lot of anger. They don't try to get help for themselves. So it comes out sideways. They start to develop vague physical symptoms.

Pretty soon they convince themselves that there is something physically wrong with them. They go to the doctor time after time. All the tests are negative. Then one day a doctor gives them a name for their symptoms. A lot of the time its some weird syndrome or disorder that a lot of medical professionals don't believe really exists.

Its like the the heavens open up and a beam of light shines on them...YES..I now have a name for what is wrong with me. I told everybody that there really was something wrong with me. They take thier "medical diagnosis" on as their identity. Their life revolves around being a sufferer of this "disorder". Their family's life usually revolves around it too.

Woe to anyone who questions or challenges whether they are really "sick". Thats when all of the anger comes out big time. They make threats. They act out. They manipulate.

What a shame that they are limting their, and their families, lives. Whats really weird is that we have become a society in which there are so many dysfunctional people, in order for doctors to deal with them, they are labelled with questionable diseases. Pharmaceutical companies develop pills to treat these same questional diseases and make a lot of money. What a world


Jen said...

I hope you never have to deal with a "questionable" disease. I have MS. my health care providers assumed it was something that an anti depressant aka sugar pill would suffice as proper patient care. I wasn't being hysterical. the only time I was seen in the ER was when my leg gave out and I fell and needed sutures. I have been in such horrible pain and so frightened but I sat with it until my vision was greatly effected and I couldn't read. I choose suffering over being labeled, I feared what my co-workers would think I wouldn't wish an "silent" disease on anyone, and I wouldn't want you as my nurse. There but for the Grace of God go I.
Jennifer, RN, Neuro-Trauma unit

Marissa said...

Why in the world would you assume she's talking about MS? That's a completely illogical assumption.

Anonymous said...

MS is a real disease. I believe she's referring to Chronic Fatigue or Fibromyalgia, or stuff like that. We actually know MS exists & why. Sensitive much?

Anonymous said...

MS **was** originally thought to be a similar diagnosis, and not something real. It took a long time for medicine to accept that MS was real, and not a figment of fevered imaginations. Check the history, and remember that everyone you meet is fighting a great battle.

The first commenter, I believe, was speaking to the same prejudice that the column posting demonstrates.....not wanting to be labelled as a whiner, or someone who just needs a diagnosis so they can label themselves "sick" and use their diagnosis to impose on others.

Marissa said...

That would be totally valid if malingerers did not exist. But they do. And every blessed time a blogger says something about them, people come out of the woodwork to act hysterically offended. It's as predictable as the moon.

girlvet said...


So true. I was looking over past blog entries and one in which I mentioned "auto immune disorder" and there were 35 comments. Its like groups of people send out a notice to go forth and comment.

This is how wacked some people are - one wanted me to die from HIV from a needle stick.

Anonymous said...

I love the ones who are semi frequent fliers. Always with several system complaints that don't make sense. Get full work ups each time with no diagnosis. Oh, maybe there is a potassium that's a tad low or a slight elevation in the white count with negative urine and CXR. These ppl focus on their illnesses and usually bring in a codependent family member or two to answer their questions. Dispo to f/u with PCP but they whine about that because their doc doesn't listen or their insurance changed or some other bs thing. America can't cope people.

Steve said...

My closest and dearest friend has been suffering declining health for several years now. It started as lower back pains. Then mysterious pains in her leg, a crushed sensation. Then, her arms and hands. She began falling down periodically, for seemingly no reason or control. Her vision would periodically blur. Then came the occasional memory loss. Blocks of time, gone. She saw doctors, specialists, neurologists... trying to find any possible answers to the whats and whys. In highschool, she was on the basketball team. She ran track. She was a vibrant, athletic young woman. Now at 32, she has been diagnosed with MS, and has had two surgeries to try to correct degenerative discs in her spine. Every day is a battle against an invisible something that eats away at not only her body, but her sense of self. It's something nobody can see from the outside. In general, she "looks" fine. To you, and many in your profession, she is a pest. She is a pill seeker, a chronic complainer, an attention whore, and it is all in her head. She is a waste of your time.

Last night, she went to the ER at a local hospital. She had been having increasing chest pains. The way she decribed it, she could feel her heart periodically stop, then then beat extremely hard and rapidly causing intense pain. She's had palpitations before, and per the instruction of her surgeon, did not wait and went in for immediate care. She was in bad enough condition that she was seen immediately upon entry. After an IV, several vials of blood, an EKG snapshot, and a chest Xray, she was sent to "subwaiting" to await a bed and further treatment. The minutes ticked by, people came and went. The woman with hives, the teenager who spent her time rolling her eyes, arguing at her mother's insistance on treating her "severe stomach pain", etc... all taken and given proper care as she sat there quietly in a wheelchair, waiting. Chest still pounding. The room changed over several times, and there she stayed. Four hours passed, with repeated "we'll be right with yous", she'd finally had enough. Fighting angered tears, she requested the IV be removed. There was no attempt to tell her anything, no trying to stop her, no compassion at all. No doubt the RNs were relieved. One less problem to deal with.

We got in her vehicle to leave, and she broke down. The tears, the anger and frustration.. "See Steve, this is why some days I just want to eat a fucking revolver! No one listens, and no one cares! To them, I'm just a fucked up, God Damn Nuissance!!".

I stayed with her the rest of the night. She barely slept from the pain. I listened to her vent, then watched her try to rest. Having no idea what she was dealing with, I didn't sleep. Today, after much insistance on my part, she visisted her PCP. At this moment, she is on a 24 hr heart monitor, has been rx'd antenolol, and her thyroid is being tested for irregularities. I am currently awaiting results. Will this tie in to MS? I don't know, but the point remains... she deserved much better than how she was treated. She was seeking help.

I understand that being part of an ER staff sees it's share of annoyance, problem patients, and frankly everyone has bad days. You are correct though, she HAS "become her disease". There is no cure, and it consumes her at times and feeds her desperation to just be normal. The truth is, she likely never will be. Take a moment to give thanks that you don't have to walk in her shoes. I'd also recommend you heed your own advice given forth in your latest entry... there is in fact a human being under there.

Marissa said...

Oh, so she was seen immediately, given proper care by ruling out the most dangerous/emergent possibility, chose to leave, and you seriously think the ER staff should have begged her to stay? After doing what the ER exists to do? Look, I have no qualms about her leaving, but I don't see any lack of care here. I do, however, detect quite a bit of hysteria on your part.

girlvet said...

No doubt the ER was busier than shit, that is why she went to "subwaiting". No doubt there were people in the lobby. There were people sicker than her that needed attention. I'm not sure what she wanted the staff to do. Unfortunately we don't have time to sit down and listen to people.
Thats just the way it is.

Steve said...

Hysteria? No, that is what your patient feels after being left for four hours unattended, with no treatment, answers, or help, while still in the same pain that brought them there. Sure, they ran a few tests upon arrival. Great, lets find out what's happening here. What then, is an acceptable wait time after that? Four hours? Six? Eight? How long is it ok for someone to continue suffering with no indication given to them as to when or if they'll be treated? I understand that an ER is a ridiculously hectic arena, and what you go through on a daily/nightly basis is immeasurable. I also understand that part of the job is determining an emergency pecking order. But when did hives take priority over heart problems? I realize I'm speaking from the point of view of someone with great concern over someone they care about, which means my sense of urgency is obviously much greater than yours. But if this was you, or your loved one, would you be ok with it?

Steve said...

I will add that my intent with my original novel was to respond to the blog post of "becoming the disease", not create an us vs them ER battle. The idea in the blog post that these people "choose to live their lives" this way, in fact the entire post, struck a nerve with me. No one chooses this. My ER story was to simply provide an example that she's not only fighting this invisible disease itself, but in many respects, those she turns to for help. Not long ago, she had a neurologist tell her, "You look fine". Think about that for a second... a specialist in neurological disorders, which unless you're in mid-seizure are invisible by nature, told her she LOOKED fine. This is the mindset people like her are up against.

I do understand that there are those who abuse the system. It makes me as furious as it does you. But please understand, there are many who have real, very difficult problems. They're just trying to find answers and get better. The original post makes these people seem crazy. I'm simply trying to ask you to understand that it's perceptions like these that MAKE them that way.

Anonymous said...

get a new career

Anonymous said...

I work in a small, boutique practice in a sub-specialty. No emergencies. Most of the women who come to us have 1 of 2 problems, but because these problems are so poorly understood by the larger medical community, they have gone undiagnosed, sometimes for years. Both problems have a fairly high rate of successful fix. 3-6 months and most people are better. It amazes me thought that some of these people are so invested in "being sick" that they refuse to follow the treatment plan (topical meds and physical therapy). Being sick has made them "special" and the focus of their family/social support group. Being sick is their identity - and they refuse to go back to just being a regular person. There is a small percentage (<5%) who can't get better because of an underlying congenital problem. So frustrating to see THOSE women try and try, while the "special" group just whines and whines.

MacKenzie said...

I love this blog post. It is part of a larger conversation about the nature of health. Western medicine looks at health as a machine. But what if these diseases could be looked at from the perspective of energy systems?

Emotions repressed can break the body down, stiffen it and contort it. I have personally released grief and rage that had locked me in severe depression, anxiety and chronic tension headaches for 38 years. Not even Mayo Clinic could solve the mystery with conventional medicine.

I say all this in case energy medicine might be a fresh "prescription" for these sufferers. Perhaps acknowledge their active traumatized state by asking if they want to try healing whatever is underneath their pain, since Western medicine plainly cannot see it.

If yes, they are ready to let go, mention holotropic breathwork, access consciousness, reiki, and sound vibrational clearings. If they are not ready to feel and face the source trauma and make peace with it, then they are the kind of "woundology" ppl you and Caroline Myss talk about.

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