IT'S NOT A WAR, THERE ARE NO WINNERS AND WORDS MATTER

I was sent a link which is on Komen's website. Seeking donations, the banner shouts:

DON'T LET BREAST CANCER WIN

Here's a quote from the profiled patient, who happens to have metastatic breast cancer:

"Hold steady. You will get your answers. You will get through this."

And here's the problem. The narrative is wrong. The messaging is skewed to make a point. Early detection is it. Five years is the magic hurdle. Mammograms save lives.

I do not wish to be divisive. I am not attempting to start a Komen bash or a war between supporters and dissenters. Apparently, that is already taking place on Lori's blog where she wrote a rebuttal of sorts. For Lori, it's offensive. Her fingers flew across the keyboard. I know when she received the email with the aforementioned link. I know when she put the post on her blog. I know the title of Lori's blog upset many.

Too bad. Lori has metastatic disease, too. She gets to make her own rules. Write her own narrative and is entitled to her own reaction which is something we've shared in many of our private conversations. She is the first to acknowledge: to each their own. And so she wrote:

ONLY THE WEAK DIE OF CANCER

Provocative? Absolutely and deliberately. It's compare and contrast. Words matter. Don't let breast cancer win is offensive. Even more offensive? "You will get through this." No.She.Didn't. But alas, she did say those words. And for the most part, that's a damn lie. A FEW will get through this, very few at that. The science is black and white on the survival issue.

I'm going to take this two steps further.

Step One: In December, a story appeared in Science Daily on the use of war metaphors. It was about a study done at the University of Michigan. Among the findings.... the use of words like battle and fight may have unintended negative effects when used to motivate cancer patients. Surprised to hear that those two words are in the list of Top Ten Verbs Used to Describe Cancer. I don't know if research is on that list of verbs but it damn well belongs in the Number One spot. Many of us dislike the war metaphors and now there may be some science to back the dislike. Score one for the grumblers.

Step Two: Someone who was known to many of my dearest friends in the metastatic breast cancer community died on February 8th. Laurie Becklund was also a renowned journalist, a Fulbright scholar. Her death was reported on February 9th but it was a posthumously posted Op Ed that is required reading for all. As I Lay Dying appeared in the LA Times on February 20th, just three days ago. Every sentence, every word resonates.

Her message is clear. The present narrative must change. The big guns, those who seem to control the narrative, have to cut the nonsense. Stop spending so much money on fighting and hope and awareness and early detection and start spending more on research. Life saving research is what we need most. This is not a new rant for me and it's not a new rant for those who read this blog. Read what Lori and Laurie have said far more eloquently and with far more intelligence than I can muster.

If this is what we are waiting for to change the narrative, well... I guess it's time.......

Thanks to my cousin, Midnite Mike for taking this photo as proof that hell has indeed, FROZEN over. It's Time.

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UTI, HRI AND STAT DOCS - PUTTING PATIENTS FIRST

The thing is, they come on like gangbusters. I'm talking about those extremely annoying urinary tract infections. Yeah. TMI. Got it. Here's my thing. I can be walking around fine. Literally FINE. And from one second to the next, I feel it. The dreaded pressure and within moments, I'm ready to hurl myself off the roof of the tallest building I can find. Generally, that would be my home. Two floors, which means I would likely just break lots of bones and cause lots of other bodily pain.

Jokes aside. Last night at approximately 7PM I was having dinner in a local diner. I thought I had that feeling. Got home and sure enough, the pressure. The purpose of this post isn't to discuss the exact track of a UTI as it occurs in my body. The purpose is to share something rather unique and wonderful and cutting edge.

Although I'm having a bit of a health insurance issue at the moment thanks to that emergency intensive care stay dating back to October in an out of network hospital, the issue is not with MY insurance company.  They are doing everything they can to contact the hospital and the providers who poked their head in the door and promptly sent me a bill for $750.00 for their consultation and care. Followed by several other providers who did the same.

My health insurance company, Health Republic of New York? Love them. A couple of months ago, I received notification from them about something called Stat Doctors. It's one of my benefits. It has a zero co-pay, I can download an app, I can access them via my computer or I can call them on the phone. Being a computer geek and a health geek, I was intrigued. Fascinated. Curious.

Last night, my curiosity was satisfied and What.A.Pleasure. First, I rummaged through several cabinets to see if I had ANY antibiotics of any kind anywhere. The temperature is dropping rapidly again and last night it felt like the thermometer was falling with each tick of the clock. I do not have a primary care physician. Yes, you can lecture me on that another time. Even seven years post treatment, I still see a few of the doctors at MSKCC. Adding an annual physical just seems like a waste of healthcare dollars. So, I'm a big fan of those urgent care centers. Flu-like symptoms, I'm there. UTI symptoms, I'm there. Lingering fever, I'm THERE.

Except last night, I didn't want to Go There. It was too cold and I was in pain that was intensifying at the same rate that thermometer was falling. A perfect storm. I grabbed my phone and hit the Stat Doctors app. It got a little creepy when it started asking me if the app could access my microphone so I decided I would use the phone option. I pressed the wrong button and was listening to the menu in a foreign language. My brain doesn't work well with numbers under the best circumstances. Add pain distraction and I'm done. So I grabbed my laptop.

Went to the Stat Doctors site where I already set up a profile a few weeks ago. I logged in and clicked a button that said, "Start an e-visit."  I was instructed to download a plug in which I did and the next thing I know, a screen opens up where I'm being checked in for a visit and the process is being explained. Total time for this entire process, under three minutes. I was informed my wait time would be less than ten minutes. I was told I could play some computer games on their site or I could busy myself with something I might be doing in my home and come back to the computer in ten minutes.

I was mesmerized by the whole thing. What was going to happen next? I never moved from the sofa. Watching television, laptop exactly where it's name implies. On my lap. Within two minutes, I see a man on my screen. I already knew his name since I was told who would be seeing me and provided with a link to his medical credentials. I could see him, but he couldn't see me. I had clicked the little button to turn off my camera. I think I was a bit shocked to see this strange face on my screen.

I'm fairly savvy with this tech stuff but I really never embraced FaceTime or Skype or those visual phone conversations. I hate the way I look. I'm always slumped in a chair which is an extremely unflattering angle OR, I'm sans makeup and not many people see me without makeup. I'm an old fashioned telephone kinda gal in a techie world. Effective immediately, I intend to change that because this Stat Doctor thing was simply amazing.

I clicked on my camera button and the kind (yes and kinda hot) guy in my laptop introduced himself using his first name and greeted me.  "What's going on this evening?" Very quickly, I said hello and told him I have a urinary tract infection. He asked why I thought that and I told him they seem to happen in bunches and they always seem to clear up without issue. Explained a bit more.... he asked when I had the last one..... I told him and then he asked if there was a particular medication that seemed to work best for me. I told him that Cipro was my preference. We discussed dose and done.

"I'll send the prescription over to your pharmacy. I hope you feel better."

I said thank you, ended the visit on my side and stared at the computer screen. What Just Happened??

I ran out into the freezing cold to go to the pharmacy to pick up the medication. Somewhere in the back of my mind I was convinced the script would NOT be there. There would be a glitch somewhere. I was sure of it. But no. I got to the pharmacy, they already had the orders and it was almost ready.

What a stellar experience. Understand, of course, this is for very specific medical issues but for something like this, a UTI, which is a major nuisance in my life, it was simply fantastic. I saved time, I saved gas, I saved money, I knew what was wrong, I was treated with respect, my input was an integral part of the process.

Simply stated, this is the epitome of a patient partnership and shared decision making.

I'm beyond impressed. Extremely grateful this is offered to me at no charge by Health Republic and KUDOS to Stat Doctors for putting together a platform that worked like a charm. The only thing that might have made it better? A drone drop of the medication to my front door!

Well done. In fact, ingenious.

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#BREASTCANCER RERUN-HEADLINES AND STATS

I've been testing out that new forum I mentioned in a previous post.  Medium.  Yesterday, I posted something there that may not have been seen by some of you so I'm reposting it here.  I ranted about this on Facebook which prompted me to spit this out and then took place in the chat for World Cancer Day.  Good chat, except when the word "prevention" was used.  That's like nails on a chalkboard just like it was nails on a chalkboard when I saw some major advocacy organizations and some of the cancer centers tweet the screaming headline that I know is misleading.  I guess this is a We Can't Handle the Truth or everything has to be a Feel Good story but here goes.

As it appeared on medium.com

When I was a young teen, there was a running joke among a group of my friends.  One of us might say something silly and another would caution the rest of us,

"See, that's how stories start!"

USA Today posted a story late on Tuesday.  The screaming headline?

Breast Cancer deaths drop dramatically over 20 years

And that's how stories start, and now we have a game of telephone circulating the internet and social media channels.  It's World Cancer Day and here we have a skewed story that is misleading because it only tells half of the story.  We need to back things up just a bit to get a more accurate picture of what is really happening.

Using SEER data generation by the NCI which is accurate and reliable, USA Today chose the feel good story instead of the real story.  They also chose to preclude men from the statistics adding insult to injury to yet another stigmatized patient population as evidenced by the blog of Oliver Bogler and Men Have Breasts, Too, a documentary now in production.  Even CBS shined a light on male breast cancer in an episode of the popular sitcom Mike and Molly.

That's a message for another day.  Today, it's about clarifying that headline.  For starters, and as usual, it's true but it's also very misleading.  Responsible journalists tell the whole story, not just the part of the story they wish to highlight.  Thanks, at least in part, to the pervasive culture surrounding breast cancer, we have come to believe we have achieved great success.  To which I say (over and over again):

Breast cancer is NOT the great success story it is portrayed to be, it's simply the one that's been best marketed.

Stories like this solidify this smoke and mirrors success and in doing so, harm the most important population of breast cancer patients, those whose disease has spread beyond the breast:  The Stage IV patients, the ones who actually die from the disease.  The end game with cancer, with ANY cancer, is to die of something else completely unrelated to the cancer or any of the treatments used that may cause side effects like heart damage.  And, to have treatments that allow good quality of life. We need to get hit by that proverbial bus so many of us are told about when we express our fears of dying from the disease.  I know you know what I mean.

USA Today, to begin with, cites a 34% reduction in death.  Those numbers, expressed as percentages, mean little to many of us.  Does that mean that for every 100 women, 34 won't die?  What is the context?  Statistics are a funny thing.  They can be manipulated to punctuate a point.  Thankfully, the numbers the rest of us, their target audience, might understand were inserted immediately after that percentage.

In 2010, deaths attributed to breast cancer were 26.1 per 100,000 women.  In 1990, the number of breast cancer deaths was 34 per 100,000.  Yes, that's a significant change and those 8 women for every 100,000 amounts to lots of women.  I will concede that point despite the fact that I think, given the amount of money that is thrown at breast cancer every single year, we could have made more progress than 8 women.  Again, another story for another day.  Follow the money.  Are we helping those in need with those dollars?  Are we doing life saving research with those dollars?  OR, is the lion's share of that money going toward awareness campaigns in communities where we no longer need awareness campaigns?  You guess.  I'll hint.  It's behind door number three.

The more important issue with the USA Today piece is the fact that they did not go back far enough to present a true and accurate picture.  Interestingly, there is a graphic within the article that show progress from 1975 but the reality?  We need to go back to 1970 and take a good look.  So let's do it.  This is a chart of what went on starting from 1970.  The death's per 100,000 look like this:

• 1970   28.4
• 1990   34.0
• 2000   29.2 (This is what we have to show after 30 years??????)
• 2010   26.1

(Note: my stats may be a bit different as I'm choosing Clifton Leaf's numbers from The Truth In Small Doses.  He did his homework.  All of it. I wrote about it here.)

I have a few observations and then I'll let the chart speak for itself.  The spike between 1990 and 2000 is huge.  Over the next ten years, between 1990 and 2000, we were basically back to square one (circa 1970).  Thirty years between 1970 and 2000 and that number is, for the most part, stagnant.

When we analyze the overall drop in death, we should not be looking at 8 women per 100,000.  Let's look at the true picture. From 1970 through 2010, the drop is little more than 2 women per 100,000.  That's a big difference from this so-called dramatic decrease from the screaming headlong and it's one that must be noted.

Actually, we were better off in 1970 than in 2000 and that's pretty damn pathetic when we factor in pink ribbons and the money generated from walks and events and merchandising and AWARENESS. Being aware didn't really do too much to save lives, now did it?

The voices of those with metastatic disease, one of whom happens to be my mom, are forgotten.  It is their voices that must be heard.  It is the needs of this population that are most urgent and when is comes down to it, the success stories are not nearly significant enough.  The gains in overall survival time for the metastatic patients remain just slightly better during this same 40 year period.  Yes, progress has been made but the gains are incremental at best and apply to those cancers with very specific molecular signatures.

The majority of breast cancers are driven by estrogen and those cancers can and do recur as distant metastases well beyond the magic five year mark.  Any one of us diagnosed with breast cancer is potentially one scan away from metastatic disease. Up to 30% of us living with a past diagnosis can, will and do metastasize regardless of the stage at diagnosis.  In other words, even if found at stage ZERO, the cancer can recur and turn into a terminal illness with a very poor prognosis.

Frankly, I'm tired of breast cancer being portrayed as the feel good cancer and being held up as a shining example for early detection which works sometimes or even most times but not all the time and that part of the messaging is conveniently left of of every discussion about early detection.  It's buzzkill.  It detracts from the message that mammograms are unilaterally helping save lives.  Mammograms are detecting cancer earlier and earlier thanks to constant improvements being made in imaging devices but early detection is just that.  Early Detection.  And early detection is not a guarantee.

Look at the numbers, they don't lie.  The end game is death and the bottom line is this.

By and large, the number of deaths from breast cancer has remained unchanged since 1970

Fact's don't lie.  Friends DO die.  Despite the bill of goods we are being sold, this is the reality that is breast cancer.  My opinion?  A publication so widely distributed and read, a publication like USA Today should tell the whole story or no story.  But maybe that's just me.......

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WORLD CANCER DAY 2015 #NOTBEYONDUS

AACR Blog by Margaret Foti

It's World Cancer Day.  That will take you to the official site.  This year's buzz:

Not Beyond Us

The focus is on five key points:

• Positive and proactive approach, highlighting solutions do exist and are within our reach
• Making healthy life choices to reduce risk
• Ensuring availability and access to early detection programs in all countries
• Rights of all to access quality and effective treatment regardless of geographic locale and without causing economic hardship
• Addressing full emotional, mental and physical impact of cancer on patients, families and caregivers to maximize quality of life for all

Lofty, indeed.  If we work together, if we stop duplication of efforts across all areas we can achieve these goals.  It should not be a competition among support groups or researchers to be the alpha dog.

The competition IS the collective effort of every one of us against the diseases that are cancer.

Have time at between noon and 2PM Eastern Time?  Join a twitter chat using the hashtag #FightWorldCancer.  Hope to see you there!

 


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PATIENT SAFETY INITIATIVES NEED REAL PATIENTS TO ACHIEVE SUCCESS

In the early days of my treatment for breast cancer, I remember the very first time I was escorted to the chemo chair.  My IV line was opened in the clinician's suite where they drew my blood to make sure my counts were acceptable to begin treatment. I walked the long hallway, through the double doors in a state of sheer terror.  I was about to be poisoned.  Horror stories were swirling in my head.

Would I begin to vomit the second the infusion began?  What about my hair?  Despite the fact that I call myself a "chemo fraud" because, as my oncologist informed me, "It is likely you will NOT lose your hair," did I really believe him?  Was my hair going to begin shedding on the back of the recliner within the first hour?  Yes, these thoughts were racing around my brain. Little did I realize those were the least important things I should be worrying about in that particular moment.

Two nurses approached me, all gowned up.  Vials of poison were in some sort of container.  They had my chart, the drugs, my wristband and me and between the both of them, they were about to begin a ritual that would become soon become The Welcome Routine.  After asking me to recite my name and date of birth to cross check with my wrist, they began the process of checking the vials and the orders written on the chart by the doctor.  Patient Safety.  Are we about to dispense the proper drugs to the proper patient in the proper dose?

I'd say this is a rather important matter.  MSKCC doesn't mess around when it comes to things like patient safety.   I know they've been ranked in the number one spot many times in the patient safety category by US News and World Report.  (This is the place where, as a good writer, I should be linking back to cite that but frankly, I'm on a writing roll and I know I already blogged about this including all the links, probably more than once.)

Now, I'm going to violate the HIPAA rights of an unnamed family member.  Back in October, you may recall (or not), I had a rather horrific experience in a hospital ICU with a loved one who was diagnosed with severe acute pancreatitis.  Caused by familial hypertriglyceridemia, we are still in the process of getting to the PROPER endocrinologist for the best maintenance protocol.  Diet and exercise have both been addressed.  Medication, in this case, is essential.  There simply is no way to control this without medication.

The immediate issue in October was stopping anything from causing damage to the pancreas.  The repair?  In addition to not allowing ANYTHING (not even water) from passing through the pancreas, an IV insulin drip was part of the array of bags hanging from the bedside pole.  Tests revealed glucose numbers and something called an A1C in the mild diabetes range. Immediately, my loved one was labeled as diabetic.  Indeed, the biggest part of his discharge was instructions from a nutritionist about a diabetic diet followed by the presentation of a glucose monitoring meter, a couple of test strips, some lancets to draw the blood, a smidge of insulin vials, the needles to administer the insulin and a prescription to get the the pharmacy STAT to have these items in our home.

Diabetes is a big ticket item in the medical world.  It's a money maker when you look at the necessary supplies and the number of times all of these items were to be used in the course of a day.  Except, the primary diagnosis was NOT diabetes. And yet, that is at the very top of the list of medical issues.  Houston, we have a problem.

Less than two weeks ago, we were back in the hospital.  A different hospital.  An in network hospital because, unlike October when this last emergency occurred, we were close to home.  I knew where to go.  I also knew it was a kidney stone.  I diagnosed it.

"Is the pain the same as the last time."

"No.  I can't explain it but it seems to be more painful and it's not exactly in the same place."

"Where is it?"

"Well, it seems to be in my back, too...... "

I did what I do best.  Turned to the internet with the idea already in my mind.  Saw some of the causes for kidney stones, realized one of the doctors had put him on mega doses of Vitamin D which he was taking for nearly two months, saw excessive Vitamin D could cause a stone to form, pulled out all the of blood work I had, looked at the calcium numbers, saw those were all above the normal range and climbing on each subsequent blood test, never saw ONE test for Vitamin D levels, cursed the endocrinologist, remember his brother had an episode with a kidney stone a few years ago, saw that was another risk factor, told him it was a kidney stone, knew this was going to be one painful round of crap, and ultimately, as is always the case, it was nearly midnight when we got in the car to head to the emergency room.

The ER doctor punched him in the kidney, he jumped off the table and ordered a CT scan.  I asked the doctor if this imaging to confirm could not be achieved by ultrasound.

"We can track the movement of a stone with ultrasound, but initial diagnosis is made using CT."

I asked the doctor to take a good look at the guy on the table.  Didn't he see the g'dman glow emanating from his body.  This man has been exposed to more radiation since October and the last thing I wanted to see was MORE radiation.  Countless chest x-rays, at least 3 or 4 prior CT scans and that was only what I saw.  I deferred because, armed with no solid medical evidence to the contrary, I wasn't going to debate the doctor.  The learned curve is steep during emergency room care and a subsequent emergency admission when the diagnosis is something unfamiliar.  But, it didn't take me long to find this article, published just FOUR months ago in the New England Journal of Medicine.  The headline screamed:

CT SCAN IS NO MORE ACCURATE THAN ULTRASOUND TO DETECT KIDNEY STONES

SUBHEADING:

UCSF STUDY LEADER RECOMMENDS CHANGE IN STANDARD PRACTICE

GREAT.

I wanted to go back into the ER with my phone in tow and shove it into the face of the doctor who ordered the CT scan but, since the scan DID show the pancreas was "unaffected and unremarkable," I shut my mouth.  We did get valuable information to compare with the last scan in November which talked about all sorts of things going on in and around the pancreas. However, in the scheme of this particular admission, it was UNNECESSARY radiation and the question or suggestion of the "ePatient" was summarily dismissed.  Like I said, steep learning curve.  And medically costly both is dollars and in the dangers of too much radiation (which, by the way, was also dismissed, "It's the cumulative lifetime radiation...."  Ummm yeah, I know... but if we can accomplish the goal WITHOUT adding to that accumulation, can we at least take this into consideration before ordering the damn test?)

Meanwhile, back on the floor, the nurses are reviewing the wrist band and the notes and I hear them saying something about being diabetic.  I interjected.

"He's NOT diabetic.  He has familial hypertriglyceridemia, the diabetes is an incidental diagnosis that may well have resolved already."

But the chart is king, the patient agreed and I'm, once again, in the unenviable position of being the person who really understands what's going on with this particular patient, and I'm being ignored.  Insulin was being administered each evening in accordance with the medication discharge instructions from the prior hospitalization which were continued by that aforementioned cursed endocrinologist.

Once again, I did 12-14 hour bedside stints, leaving only after shift changes to make sure I was comfortable that the night nurse was fully familiar with the the patient and the ongoing care.  Upon my return one morning, I was told,

"Late last night, I got up and I couldn't see.  It was so weird.  EVERYTHING was so blurry.  Then I felt like I was hallucinating and I thought I was going to pass out.  I called the nurse and it turns out my sugar dropped."

"WHAT??" 

"Yeah, turns out my sugar was like 40."

I'm doing a slow boil, trying to calm myself down.  Those are dangerous numbers.  He was going into hypoglycemic shock.  To my knowledge, despite administering insulin each night, no one checked his sugar before giving him the injection.  They checked the sugar when he was ready to pass out and in a flurry of activity, brought him orange juice, graham crackers and whatever else....  I wasn't there.  I was getting this second hand story from the guy who was on the verge of slipping into a diabetic coma and the day nurse who was, yes, reading from the chart.

The point.  This could have had disastrous consequences and why?  Communication.  I call this one an EPIC FAIL in the patient safety initiative thing.  Reading wristbands and asking for birth dates is a great way to confirm the right patient is in front of you before scanning the bar code with the laser but it's time to understand that LISTENING is the most important part of medicine.  Sometimes the patient &/or caregiver has something really important to share.

And just sometimes, we DO understand what's going on and sometimes, we may even understand it better than a new doctor who is just meeting a patient for the first time.  I'm stand with firm determination beside the Patient Safety Movement Foundation which had a summit just a few weeks ago.  Thank you, Michael Millenson for the Forbes article about Supercharging Patient Safety.  It was the impetus for me bringing just one more patient safety story to the forefront.

The problem, once again..... I have no letters after my name.  I didn't start a foundation.  I only have real world stories to share but it seems most of these patient centered initiatives are not looking for "expert" patients, they are looking for "professional" patients and apparently, there is a difference.


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DISEASE TERMINOLOGY 101

There is a new publishing forum out there.  It's called medium.com.  You have to read what the young-un's are writing about which is how I even found this space.  It's a novel platform.  Sort of an every person's blog.  I'm cross-posting in this space, my very first medium story.  There's lots going on--I have several half completed blog posts.  Ideas for others.  Research I want to share.  Everything half written or with notes scribbled in a margin.  Hopefully it will still be relevant when I complete the pieces!  Just as an aside, there was another emergency room run, followed by an inpatient stay for a few days (kidney stone, not me).  AND, as a further aside, the hospital from hell is NOT cooperating with my health insurance company on that ICU stint I wrote about.  The bills are over 100K at the moment.  I've been a bit busy, primarily trying not to destroy my credit for starters.... 

For your consideration as they say......  my medium story....  

I am a breast cancer patient. I was diagnosed in 2006 and I live in the shadow of the disease. When those words are uttered, in that very instant, a line is drawn in the sand that is your life. You will never be the same. You can never cross the line and move back to the other side.

There are some who choose to believe that the end of treatment signals the end of the disease. You had cancer. Many cancer patients will tell you, this is not a disease that is spoken of in the past tense. And there are many others who do choose to keep the disease in their past once they are out of active treatment. I say, whatever works.

Although, in technical terms, I have had cancer, I still take daily maintenance medication. I am, however, beyond that active treatment portion of the program. I completed all of my surgeries (seven to be precise, some big, some not so much and others somewhere in between), I finished eight rounds of chemotherapy, I live with lingering chemo fallout but when asked about my health, I will say, “I was treated for breast cancer,” or “I am a breast cancer patient, currently 5 years post active treatment.” The latter is quite a mouthful but in reality, that’s the most accurate assessment of my health status regarding the whole breast cancer thing.

Note the words. No where in those words do I say, “I am breast cancer.” And therein lies the rub. How do those diagnosed with a mental disease describe their illness? Or, how do those of us who speak of someone with a mental illness refer to their disease?

It seems to me, more often than not, what we hear is, “I am bipolar,” or “I am schizophrenic.” Words matter. There is a big push to change the conversation, to stop the stigma associated with mental illness and this might be one area where we can start to shift the thinking.

“S/he has bipolar disorder,” is a far more accurate description. S/he is bipolar, in and of itself, is a stigmatizing statement. It marginalizes. It defines the person by their illness instead of presenting an accurate assessment of the circumstances. The mentally ill are afflicted by a disease of the brain. It’s not a choice and their behaviors are oftentimes, the result of the disease.

Unfortunately, most of those with mental illness are too sick for many programs and not sick enough for others. Thus, most of those with mental illness are lacking proper and effective treatment. Had my cancer gone untreated, my illness would be physically visible, likely in the form of a large tumor protruding from my body. People would look, people would ask, people would be outraged if I told them, “The cancer wasn’t bad enough, so they refused to help me.”

People with mental illnesses are looked upon as having a disease of the mind, when in fact, they have a disease of the brain. We blame them for their behavior, we look upon them as having some sort of control over what they may or may not be doing. Think about that for a moment. When the damaged organ is the brain, the very organ that guides us through our daily routines, how can we expect those with mental illness to snap out of it unless we treat the diseased organ to the best of our ability.

I firmly believe that with proper treatment protocols, a large percentage of the unemployed persons diagnosed with a serious mental illness could be employed. It would require a cohort of employers who are willing to give those with a mental illness a chance at gainful employment. Some of the most brilliant people I know are afflicted with serious mental illnesses and/or disorders. Many of them want to work, can work and have no opportunity to work because they are stigmatized.

Instead of living with a disease, we have turned them into their disease. In doing this, have we also robbed them of the opportunity to live a full life? We define them by their diagnosis. 

She is anorexic, he is schizophrenic.

In my mind, that implies there is an element of control on the part of the person living with a debilitating disease. Is it possible that our labels are adding yet another hurdle to a population of people whose needs are largely ignored by the rest of us?

Perhaps we can begin to shift the thinking, to break the barriers, by starting with one small step. Change the words. Be conscious of how you refer to those living with mental illness. And, if you are in a position to employ someone with a mental illness, give that some thought, too.

It’s time to follow the lead of some of the mental health advocacy organizations and show that we are #StrongerThanStigma and let those living with mental illness know #IWillListen. We can start by taking whatever steps are within our power to change the status quo.

What can you do? What will you do?

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