Story of M

Today, I am writing about a friend of mine, who I will call M.¹ I have referenced various aspects of this story in other essays, but the story deserves proper telling as it speaks to many of the ways that patients don’t connect with clinicians and even their own families. 

Personal stories have a complex relationship in patient experience education.  On one hand, they can be an exemplum of how healthcare is viewed through the patient’s eyes.  It is one thing to describe the car crash as you drive by and a completely different thing to be one of the participants.  It can bring a visceral understanding that a table of numbers cannot.  These stories are popular and many of the keynote speakers at patient experience conferences are patients who have monetized their (usually negative) experiences.² On the other hand, these stories can be highly emotional and even maudlin.  While they can trigger an emotional response that makes the story become more meaningful and powerful, they can lack the substance that will drive change.  The audience of patient experience or patient advocate workers will be moved.  From my perspective, though, many clinicians have developed a callus over their emotional soft spots³ and find these emotional stories without explicit calls to action to be just empty calories.  In a previous essay, I called these stories “sadness porn.”

For me, this is not a story designed to elicit a “what a horrible miscarriage of healthcare” response.  This essay’s main focus is to show this patient’s thought process in confronting their illness.  My social media feed seems filled with people wondering how other people can make such horrible, illogical, counterintuitive decisions.  In healthcare, clinicians ask the same sorts of questions of their patients or coworkers.  This essay is designed to provide insight into how patients and those around them make decisions that seem reasonable at the moment but may not make sense through the lens of hindsight or the eyes of a clinician.  I write this not as someone who was driving at the moment of impact, but as someone who was in the passenger seat right next to them. 

This is the story of M, a woman that I was⁴ very close to, and her diagnosis with multiple sclerosis.  Two things to keep in mind as I relate this story.  First, since the health field, and treatment of MS specifically, evolves so quickly, it is important to know that this story takes place about twenty years ago.  A time before there were TV ads for all sorts of MS drugs.  A time when it was more difficult to diagnose.  Second, because of this, I do not seek to make this an explanation of MS, itself.  I am not an expert on the disease, and as best practice care continues to evolve, I am a poor resource for this.  Plus, I write essays on patient experiences and not on medical diagnoses. 

When I talk about her experiences to audiences, I often get questions about why she did or did not do certain things.  I think the best way to discuss her perspective and decision-making, then, is to treat this like an FAQ page of the popular questions I have been asked.  If I don’t answer yours, feel free to post it below. 

Why did she delay getting a diagnosis and knowing for sure?

M was not outdoorsy.  She liked being out and about, but mostly on the streets of a big city.  One day, walking the mean streets, she fell.  She tripped on the pavement, where one of the slabs elevated slightly because of shifting plate tectonics or whatever causes sidewalks to become uneven.  Her leg was wonky, which she attributed to the fall.  It felt better after a week or two.  A few months later, she developed optic neuritis, which caused blurred vision in one eye.  She went to her ophthalmologist, and he suggested that it could be heat-related.  Since she worked for a week at a renaissance fair under the hot Omaha summer sun, it seemed reasonable.  Plus, it dissipated in a week or so.  No harm, no foul.

Like many things in this story, with the benefit of hindsight, it might seem like the writing was on the wall.  But at this time, these seemed unrelated events, both with clear causes.  Given that optic neuritis can be idiopathic or a symptom of MS or other underlying condition, though, the ophthalmologist suggested seeing a neurologist.  Of course, by the time the appointment came, the eye had returned to normal as did her gait. 

He suggested a brain scan but observed that unless she was in the middle of an active flare-up⁵ it would be impossible to officially diagnose it as MS without a spinal tap.  She agreed to the scan, which showed nothing.  In looking at the scan, he actually said, “Your brain is not remarkable.”  This became a running joke.  She balked at the spinal tap because, well, they have a reputation for being significantly unpleasant.  Given this, it ended up taking over three years to officially diagnose her with MS. 

You might wonder, though why didn’t she find out as quickly as possible?  After all, isn’t knowing better than not knowing?  In her mind, though, it was not.  In her mind, there was no upside to finding out, only down-sides.

• There were very few drugs to treat it at the time.  Those that were available were daily injectables that were only about 70% effective.  Since she was, at the time, only having flare-ups every eight or nine months, she would take daily injections to prevent only two-thirds of what were rare events.  And this was assuming that her insurance would cover them.
• Her knowing meant everyone knowing.  Having this diagnosis officially stamped on her medical record would challenge her ability to get any insurance which would be very valuable to her later in life.  Once this diagnosis was a distinct possibility, she rushed out and got long term care insurance, which ended up being a great investment.

So, in her mind, where was the upside?  Delaying an official diagnosis also meant not worrying if an employer in a right-to-work state might choose to fire her rather than having the massive expense of the disease on their small business insurance policy. 

Now, again, you might imagine that knowing would provide peace-of-mind or open the door to potential future treatments or drug trials.  But in her mind, this possibility was balanced against the reality of how she would be treated by insurance companies and could be treated by employers.

Why not enter drug trials?

I mentioned above that she did not take the one treatment that was available to her.  She lived in Omaha, Nebraska.  I know that some might think that this is a small cow-town, but I will point out that according to the Google machine, it has over a million people in its metro area and is consistently ranked as one of the top healthcare hubs in the United States.  As such, there were always trials for new medications.  The problem was that she did not qualify for most of them.  She had an opportunity to enter one but chose not to.  The reason that she chose not to participate, though, will strike some as confusing.  I actually talked about this when I gave training to doctors about how to talk about statistics to patients. 

There is an old line that minor surgery is defined as surgery performed on someone else, the implication is that any surgery performed on ME is not minor.  The odds of getting MS is about 1 in 333, or about 0.3%.  Whether this is a big number or a small number is one of perspective.  It predominately strikes people between the ages of 20 and 40. When the symptoms started appearing M was 41 and she was 44 when she was officially diagnosed.  It can develop later, which she was evidenced of, but being diagnosed with a disease that affects 0.3% of the population while being outside the range of peak development left M feeling particularly unlucky.  So, when the trial that was presented to her identified that, since she had the John Cunningham virus dormant in her (which most people do), the trial could reactivate that virus and give her a life-threatening brain infection known as progressive multifocal leukoencephalopathy (PML).  The odds of this happening were small, but present.  You may hear that sentence and focus on the word “small,” but she heard that sentence and focused on the word “present.”  For someone who felt unlucky enough to get a disease that she was highly unlikely to get, she figured that her luck was only bound to get worse.  That fear of having MS and PML was simply too much.  Small odds are defined as odds affecting someone else’s life and livelihood.   

Why chase quacks?

I have often wondered why people have chased unproven cures for things that they have.  But with M, I realized why she chased anything that seemed even remotely likely to help.  I refer to this work as quackery, but I do think that this term is too broad and disrespectful of some in this space.  Yes, I do ardently hope that there is a truly miserable spot in hell for anyone who seeks to separate the desperate from their money.  But so much of this space is full of people simply sharing their anecdotal second-hand evidence in the face of uncertainty and fear.

Part of this is that, when modern medicine has no answers for you, it feels like you are left to sit quietly in the corner and die.  Into this information and outcomes vacuum you reach out for anything that might possibly help.  Further, you have family members who are all searching every corner of the internet for something, anything that might help. 

On top of this, one needs to layer the truly fucked-up disease that MS is.  In the relapse-and-remit version, it randomly decides to attack your brain in some location.  This might affect your vision, your walk, the function of your arm, your speech, it might fire on pain receptors.  And then it will stop.  So, essentially, your version of MS can generate different kinds of symptoms than someone else’s.  You can see someone on the internet claiming to have MS and touting a gluten-free diet with curing their MS.  Since they are walking around looking perfectly fine could it be the cure?  It doesn’t matter if their version of MS attacks their ability to see instead of their ability to walk.  It doesn’t matter if they are true believers or simply trying to sell something.  Their words become a life preserver in a stormy sea. 

Into this, you add the mental state of the patient.   M tried going gluten-free and felt a short-term placebo effect only to have it not work and spiral her down only to then return to it as a solution, thinking that she was not gluten-free enough.  When you compare your insides to someone else’s outsides, it is easy to blame yourself when their miracle cure doesn’t work for you. 

The one saving grace was her neurologist.  He was fantastic.  He had no options for her, especially when she transitioned into secondary progressive MS.  But he would take the articles and books from her, read them and give her his opinion.  When she said she wanted to go gluten-free, he said that it couldn’t hurt.  When she wanted to take some array of vitamins and supplements, he reviewed them for deleterious effects and said that there were worse ways to spend her money.  When she wanted to fly down to Paraguay to have a surgeon do some weird surgery on the veins in the back of her neck in an effort to address brain fog, my response was, “are you fucking kidding me?”  His response was that he had a patient of his try it and his patient reported no benefit.  He was remarkably patient and even with her.  Without him being present and providing a calm voice, she probably would have gone off the deep end.

Why not be hopeful?

M was not a pessimist, but she was a realist.  Her life was not horrible, but it was hard-knock and she had some challenges.  She was in recovery and this was a constant journey.  She knew that the second that she thought that she reached the end and that she was cured, this mindset planted the seed of relapse.  So, be in the moment and find happiness, but be grounded.  There is a line in recovery that if you keep a foot in yesterday and a foot in tomorrow, you are pissing on today.  In M’s mind, unfounded hopefulness was just keeping a foot in tomorrow.  She found great comfort and insight in David Rakoff’s book, Half Empty and Barbara Ehrenreich’s book, Bright-Sided. 

Being optimistic or hopeful is not easy, especially when you have evidence that it doesn’t feel warranted.  But it might even be worse to be aggressively optimistic.  A friend of mine’s ex-husband lost vision in one eye due to an infection he got at birth.  A cure for the cause of the infection was created less than a year after he was born.  So, he was figuratively, if not literally, the last person to ever lose sight due to this infection.   I know this story because I heard from him the first time I met him.  His life was self-defined by this thing that made him an unlucky oddity.  Perversely, this made him recklessly optimistic, with a variety of get-rich-quick schemes and a gambling addiction which felt like a demand for the universe to repay him for this random kick in the pants at birth. 

Like so many things, irrationally hopeful is like being irrationally pessimistic.  It feels untethered from reality.  Or at least from our reality.  The uncomfortable truth is that we often categorize people as irrationally happy or sad based upon a comparison of ourselves, if we were in that situation.

• If I were in that situation, I would fight like hell, so I don’t understand why they are not doing anything. 
• If I had their terminal disease, I would just get drunk, eat pizza and watch TV until I died.

When people asked M why she wasn’t optimistic, why she wasn’t trying everything or why she was wasting her money on supplements or fad diets that won’t work, they were really asking her why she wasn’t more like they would be if they were in her shoes.  When they asked me that, I would simply say, “Well, when you get MS, you can try that.” 

So, what does this have to do with patient experience?  I think so often, we mistake communication between clinicians and patients as conversations between two rational equals.  In reality, though, that is not the case.  Much of the time, it is between someone who has a callus developed over their emotional response and someone who is in the early stages of feeling their feels.  It should not be a wonder why these communications fail.  It should be a wonder how is it that they ever succeed.

¹Lest you be concerned, I asked her a decade ago if I could talk about her experiences in presentations and essays.  She ardently agreed.

²I mean no disrespect when I say that they make money telling their story.  I only mean that they are not random patients recounting their experiences, but people who have written books and have become professional speakers because of their hardships. 

³I also mean no disrespect to clinicians.  This is not to say they are insensitive, but only if you will not survive very long in healthcare if you emotionally break down every time you meet an Alzheimer or pediatric cancer patient.  Developing the ability to compartmentalize is crucial.

⁴You will notice the use of past tense in these references.  She always hated all the euphemisms for death, like “passed on,” “expired,” or “is no longer with us.”  So, I will simply say that M has died.  This essay is not about her death, though, so I will not linger on that part of the story.

⁵There are two types of MS—relapsing-and-remitting and secondary progressive—and the first involves flare-ups, where for no particular reason, the disease decides to fuck with you in some specific way only to subside after a few weeks.