MetroFocus: October 18, 2022

Encore: December 30, 2022

“THE INVISIBLE KINGDOM:  REIMAGINING CHRONIC ILLNESS”

A silent epidemic of chronic illnesses afflicts tens of millions of Americans:  these are diseases that are poorly understood, frequently marginalized, and can go undiagnosed and unrecognized altogether.  Meghan O’Rourke, author of the 2022 National Book Award nominee for nonfiction “The Invisible Kingdom: Reimagining Chronic Illness,” joins MetroFocus to detail her investigation into the category of “invisible” illness such as autoimmune diseases, Lyme disease, and now long COVID.  Meghan shares her personal story and offers hope to those struck by mysterious diseases.

TRANSCRIPT

> TONIGHT, FROM LONG COVID THE LYME DISEASE, MILLIONS OF AMERICANS SUFFER FROM CHRONIC ILLNESSES THAT ARE POORLY UNDERSTOOD, EVEN BY DOCTORS.

MEGHAN O'ROURKE, AUTHOR OF 'THE NEW YORK TIMES' BEST SELLING BOOK 'THE INVISIBLE KINGDOM' SHARES HER STORY AND OFFERS HOPE TO THOSE STRUCK BY INVISIBLE DISEASES.

'METROFOCUS' STARTS RIGHT NOW.

♪♪

> THIS IS 'METROFOCUS,' WITH RAFAEL PI ROMAN, JACK FORD AND JENNA FLANAGAN.

> 'METROFOCUS' IS MADE POSSIBLE BY -- SUE AND EDGAR WACHENHEIM III, THE PETER G. PETERSON AND JOAN GANZ COONEY FUND, BERNARD AND DENISE SCHWARTZ, BARBARA HOPE ZUCKERBERG, THE AMBROSE MONELL FOUNDATION.

AND BY --

> GOOD EVENING, AND WELCOME TO 'METROFOCUS.'

I'M JENNA FLANAGAN.

FOR THE UNTOLD MILLIONS OF AMERICANS LIVING WITH A CHRONIC ILLNESS, THE EXPERIENCE CAN BE SCARY, FRUSTRATING, AND INTENSELY ISOLATING.

THE SAME GOES FOR THOSE WHO SUFFER FROM ILLNESSES THAT ARE POORLY UNDERSTOOD OR DIFFICULT TO DIAGNOSE AND TREAT SUCH AS LYME DISEASE OR A WHOLE HOST OF OTHER AUTOIMMUNE DISEASES.

TODAY, THE EMERGENCE OF LONG COVID MEANS MORE AND MORE AMERICANS ARE GRAPPLING WITH WHAT IT MEANS TO LIVE WITH CHRONIC ILLNESS.

AUTHOR AND JOURNALIST AND POET MEGHAN O'ROURKE KNOWS THESE FEELINGS FROM PERSONAL EXPERIENCE.

SHE HAS BEEN LIING WITH CHRONIC ILLNESS FOR MOST OF HER ADULT LIFE.

IN HER BOOK, 'THE INVISIBLE KINGDOM' ROURKE WRITES ABOUT THE EXPERIENCE AND WRITES ABOUT THE HISTORY OF HARD TO UNDERSTAND CONDITIONS AND HOW SOCIETY CAN HELP THOSE WHO SUFFER FROM THEM.

THE BOOK IS A 'THE NEW YORK TIMES' BEST SELLER AND MEGHAN O'ROURKE JOINS US ON THE SHOW RIGHT NOW.

MEGHAN, WELCOME TO 'METROFOCUS.'

THANKS FOR HAVING ME.

THEs A GREAT PLEASURE TO BE HERE.

AS I MENTIONED IN THE INTRO, YOU OF COURSE HAVE A PERSONAL EXPERIENCE WITH THIS.

SO I'M WONDERING IF YOU COULD JUST SET THE GROUND WORK FOR THE AUDIENCE SO WE UNDERSTAND WHERE YOU'RE COMING FROM.

YEAH, ABSOLUTELY.

IT'S HARD TO TELL MY STORY SUCCINCTLY BECAUSE AS YOU SAY, IT WENT OVER MOST OF MY ADULT LIFE, BUT THE WAY I TEND TO DESCRIBE IT IS I GOT SICK THE WAY HEMINGWAY SAID YOU GO BROKE, GRADUALLY AND SUDDENLY.

I HAD A SMALL HOST OF THINGS GOING ON IN MY 20s AND I WOULD SEE THE DOCTORS AND SAY I'M FATIGUED.

I HAD BRAIN FOG, HIVES EVERY DAY FOR A YEAR.

I HAD DRENCHING NIGHT SWEATS, WHICH IS UNUSUAL FOR A 20-YEAR-OLD.

BUT IT WASN'T UNTIL MY 30s THAT I GOT A VIRUS AND THEN JUST REALLY NEVER RECOVERED FROM IT.

I HAD A CONSTELLATION OF SYMPTOMS THAT ARE CALLED VAGUE OR SUBJECTIVE BECAUSE THEY'RE HARD TO MEASURE WITH OUR CURRENT SYSTEM.

WE'RE GETTING BETTER AT MEASURING AND LOOKING AT THESE.

THESE ARE SYMPTOMS LIKE BRAIN FOG.

FELT LIKE MY HEAD WAS FULL OF MOLASSES.

HARD TO RECALL WORDS, WHICH IS BAD IF YOU'RE A WRITER.

I EVENTUALLY HAD GOTTEN DIAGNOSED WITH A TICK--BORNE DISEASE AND EHLORS DANNERS SYNDROME.

IT'S INTERESTING.

ON 'METROFOCUS' WE'VE SPOKEN ABOUT SOME OF THE CHALLENGES THAT MEDICAL INDUSTRY STILL DEALS WITH, THINGS LEAK LIKE SEXISM, MEDICAL RACISM.

I'M WONDERING FROM YOUR EXPERIENCE AND IF RESEARCH THAT YOU DID, WHAT WERE YOU ABLE TO UNCOVER THAT MIGHT GIVE SOME UNDERSTANDING AS TO WHY SOME PEOPLE GO UNDIAGNOSED FOR SO LONG.

YEAH.

SO, THIS BECAME THE REALLY -- SORRY.

I HAVE A VISITOR IN THE ROOM AT THE MOMENT.

THIS BECAME THE QUESTION THAT DROVE ME AND REALLY ANIMATED BY -- IT WAS THE REASON I WROTE THE BOOK, RIGHT?

IS THIS A DIAGNOSTIC ANYONE, WHERE IT'S EASY TO GET DIAGNOSES FOR A WHOLE ARRAY OF THINGS, WE WORRY WE PATH OL JIIZE TOO MUCH.

I HAD BEGUN AND REPORTING AND READING ABOUT THESE CONDITIONS AND FOUND I WAS NOT ALONE.

TON OF OTHER PEOPLE WERE FINDING IT HARD TO GET A DIAGNOSIS, FINDING THEMSELVES DISMISSED BY DOCTORS.

I INTERVIEWED ABOUT 100 PEOPLE FOR THE BOOK, AND IT WAS SOMETHING LIKE 95 OF THEM HAD BEEN TOLD ALONG THE WAY BEFORE RECEIVING A CLEAR-CUT MEDICAL DIAGNOSIS THAT THEY WERE HYPOCHONDRIACS OR SUFFERING FROM ANXIETY.

WHAT MY RESEARCH SHOWS IS WHAT MANY OF US KNOW INTUITIVELY.

FIRST, I SAY MEDICINE HAS A WOMAN PROBLEM IN THE BOOK.

IT TENDS TO DISMISS WOMEN WHEN THEY SPEAK ABOUT PROBLEMS IN THE BODY.

WE CAN TRACE THAT BACK TO FREUD AND HYSTERIA AND THE RISE OF THE EPIDEMIC OF THE DIAGNOSIS WHEN WOMEN SUFFERING FROM VAGUE SYMPTOMS WERE OFTEN SEEN AS HAVING A PSYCHOLOGICAL PROBLEM THAT EXPLICITLY WAS FRAMED AS, YOU KNOW, WHEN YOU'RE EXPERIENCING PSYCHIC STRESS AND YOU DON'T KNOW HOW TO HANDLE IT, IT SHOWS UP IN BODILY AILMENTS.

WE HAVE THIS UNDERSTOOD LYING IDEA THERE.

THEN TWO, RACISM, SYSTEMIC RACISM, WE CAN SEE AND STUDY IS, IS SHOWING THAT DOCTORS TEND NOT TO TRUST AND TREAT MANY PEOPLE OF COLOR, RIGHT?

THERE'S A LOT OF GOOD LITERATURE LOOKING AT DISPARITIES IN TREATMENTS BASED ON RACE.

BUT THE UNDERLYING ALL OF THIS, THE PROBLEM FOR THE KINDS OF DISEASES I'M TALKING ABOUT AND THE PROBLEM FACING US NOW IN THE EPIDEMIC OF LONG COVID THAT'S COMING, IS THAT MODERN MEDICINE IS BUILT ON MEASURING THINGS, RIGHT?

IT'S BUILT ON, YOU GO IN, GET LAB WORK, GET AN X-RAY, GET AN MRI, AND WE CAN SEE WHAT THE PROBLEM IS AND WE KNOW BASED ON EVIDENCE AND STUDIES WHAT TO DO AND HOW TO FIX IT, RIGHT?

THIS IS A HUGE POSITIVE, RIGHT?

IT'S BROUGHT US BETTER HEALTH, EVIDENCE-BASED MEDICINE, FEWER TREATMENTS THAT YOU UNDERGO THAT ARE -- TO NO AVOIL, RIGHT?

BUT IT'S A REAL PROBLEM WHEN YOU LIVE AT THE EDGE OF MEDICAL KNOWLEDGE, RIGHT?

AND WHEN WE DON'T YET KNOW HOW TO MEASURE.

WHAT'S CAUSING BRAIN FOG?

RIGHT?

WHAT'S CAUSING FATIGUE?

WE'RE STARTING TO LEARN SOME THINGS BUY LOGICALLY, BUT WE DON'T HAVE A ONE-SIZE FITS ALL TEST FOR BRAIN FOG.

I'M WONDERING BASED ON WHAT YOU'RE SAYING WOULD WE PERHAPS BE AT THE BEGINNING OF ANOTHER MEDICAL REVOLUTION.

I'M USING THAT TERM BECAUSE THERE WAS A TIME WHEN PEOPLE DIDN'T UNDERSTAND PERHAPS WHAT CANCER WAS OR WHAT OTHER DISEASES THAT WE KNOW, DIABETES, ET CETERA, WHAT THEY WERE, HOW THEY SPREAD, WHICH WE CAME TO UNDERSTAND THROUGH MEDICAL BREAKTHROUGHS.

DO YOU THINK WE MIGHT BE AT THE BEGINNING OF ANOTHER PHASE LIKE THAT, WHERE OTHER PERHAPS MORE CHRONIC PERSISTENT ISSUES THAT AREN'T AS ACUTE ARE BEING EXPLORED?

ABSOLUTELY.

ONE OF THE THINGS THAT I TALK ABOUT IN THE BOOK IS I THINK MY REPORTING REALLY SUGGESTED TO ME, EVEN BEFORE THE COVID-19 PANDEMIC AND THE LONG COVID THAT CAME WITH IT, THAT WE'RE ON THE VERGE AFTER A PARADIGM SHIFT IN TERMS OF HOW WE THINK ABOUT WHAT SOME RESEARCHERS ARE CALLING INFECTION ASSOCIATED CHRONIC DISEASES.

SO, THE CLEAR WAY TO SAY THIS IS THAT WHAT WE'RE REALIZING IS THAT WE USED TO THINK THAT YOU GET A VIRUS, YOU FIGHT IT, YOU EITHER DIE OR LIVE.

WHAT PEOPLE ARE NOW SEEING, AND WE'VE SEEN THIS IN THE PANDEMIC, IS ACTUALLY A LOT OF VIRUSS AND PATHOGENS SEEM TO TRIGGER KIND OF ONGOING VAGUE CHRONIC PROBLEMS IN A LOT OF PEOPLE.

AND SO WE'RE REALLY IN THE MIDDLE OF THIS FROM A RESEARCH PERSPECTIVE EXCITING MOMENT OF HUGE STRIDES BEING MADE IN TERM OF OUR UNDERSTANDING IN THAT SOMETHING LIKE THE FLU MIGHT BE CAUSING LONG FLU, RIGHT?

EVERY VIRUS IS DIFFERENT.

SOME VIRUSES ARE MORE PRONE TO CAUSING LONG-TERM SYMPTOMS.

THE ONE THING I'LL SAY IS THAT AS HARD AS IT IS TO BE IN THIS MOMENT WHERE WE'RE SEEING SOME PEOPLE GET SICK WITH LONG COVID, I'M IN TOUCH ALL THE TIME WITH RESEARCHERS, AND THE LEAPS AND BOUNDS THEY'RE MAKING IN UNDERSTANDING WHY THIS HAPPENS IS EXTRAORDINARY, AND I FEEL SOME TINY BIT OF HOPEFULNESS AROUND THAT AREA OF INTELLECTUAL GAIN.

I'M ALSO WONDERING, FOR PEOPLE WHO ARE STILL STRUGGLING WITH GETTING DIAGNOSED CORRECTLY OR EVEN TAKEN SERIOUSLY, WHAT DOES YOUR RESEARCH SHOW YOU?

WHAT WAS THE PSYCHOLOGICAL IMPACT OF THAT FOR SOMEONE WHO KNOWS THEIR BODY?

THEY KNOW THEY'RE STRUGGLING WITH SOMETHING AND YET IT SEEMS AS IF NO ONE HEARS THEM.

YOU REALLY HIT THE CRUX OF THE PROBLEM.

I USED TO SAY TO MY PARTNER, I HAVE TWO PROBLEMS REALLY.

I HAVE THE DISEASE ITSELF, WHICH WE'RE NOT SURE WHAT IT IS, BECAUSE IT TOOK TEN YEARS FOR ME TO GET ANY KIND OF DIAGNOSIS, AND THEN I HAVE THE INVISIBILITY OF THIS DISEASE, THAT NO ONE KNOW WHAT IS IT IS.

IT'S HARD TO EXPLAIN TO PEERS, COLLEAGUES.

IS IT REAL?

WHEN NO ONE KNOWS WHAT YOU'RE GOING THROUGH, IT'S INCREDIBLY LONELY.

AND I SAY IT WAS THAT INVISIBILITY THAT ALMOST KILLED ME.

IN DOING INTERVIEWS FOR BOOK AND HEARING FROM PEOPLE SINCE I'VE PUBLISHED THE BOOK, THE NUMBER ONE THING I'M HEARING IS THAT SENSE OF BEING LEFT ALONE WITH THE ILLNESS.

THE SENSE OF PSYCHOLOGICALLY STRUGGLING WITHOUT THE CLEAR CUT DEFINITION OF, YOU HAVE CANCER, HERE'S THE PLAN.

RIGHT?

I THINK THERE'S TWO PRACTICAL PROBLEMS, RIGHT?

IT'S HARD A GET THROUGH THE GP OR DOCTOR OR SPECIALIST BECAUSE YOU WON'T KNOW TO WHOM TO TURN.

IF YOU HAVE AN AUTOIMMUNE DISEASE YOU CAN FIND YOURSELF GOING TO A RHEUMATOLOGIST.

IT COULD TAKE A LONG TIME BEFORE THE DISEASE SHOWS UP IN TESTS SO IN THE MEANTIME YOU'RE LEFT IN LIMBO.

THE OTHER THING IS, HOW DO YOU ASK FOR ACCOMMODATIONS AT WORK OR IN YOUR PERSONAL LIFE?

HOW DO YOU FIGURE OUT, THIS IS THE LIFE I CAN LEAD AND I WANT TO LEAD THAT LIFE TO THE FULLEST I'M ABLE TO?

AGAIN, WHEN YOU DON'T EVEN KNOW WHAT'S GOING ON AND HOW IT'S GOING TO TURN OUT WEEK TO WEEK.

IT'S ALSO INTERESTING YOU BRING UP THE NUMBER OF TESTS THAT PEOPLE END UP GOING FOR.

WE'VE DONE STORIES ABOUT THE LYME DISEASE AND OTHER COINFECTIONS THAT TICKS CAN CARRY, AND WHAT WE AT LEAST FOUND WAS A LOT OF DOCTORS WERE TELLING US THAT IF IT DOESN'T SHOW UP ON THE LYME TEST IT CAN GET MISSED.

THEY'RE NOW UNDERSTANDING THAT THERE ARE OTHER COINFECTIONS THAT TICKS CAN CARRY.

AND I'M WONDERING IF THAT ALSO MIGHT BE -- YOUR RESEARCH WAS SHOWING THAT MIGHT BE PART OF THE ISSUE, WAS THAT IF IT DOESN'T SHOW UP ON THE TEST, WELL, THEN, WHAT AM I SUPPOSED TO DO IF YOU'RE A DOCTOR?

WHAT I HEARD FROM PEOPLE LIVING WITH CONDITIONS SAID, MY DOCTOR SAID THERE'S NOTHING WRONG ON THE TEST, I SHOULD SEE A PSYCHIATRIST.

RATHER THAN THE INTELLECTUAL IDEA OF, IT'S IN THE OP YOUR TEST.

THERE'S A LOT WE DON'T KNOW.

I'M LISTENING TO YOU.

I'M LISTENING AND HEARING SOMETHING'S WRONG.

FIRST WE NEED TO GET TO A PLACE OF TRUST BETWEEN PHYSICIANS AND PATIENTS.

BUT YOU'RE ABSOLUTELY RIGHT IN THE SCOPE OF THE DISEASES I'M TALKING ABOUT, INCLUDING TICK-BORNE ILLNESS AND AUTOIMMUNE DISEASE, WE DON'T HAVE GREAT TESTS.

ONE LEADING RESEARCHER, NOEL ROSE, WHO DISCOVERED A AUTOIMMUNE DISEASE TOLD ME FOR SOME OF THESE DISEASES WE CAN'T SEE IT ON A LAB TEST UNTIL 80% OF AN ORGANIZE THAT'S BEING ATTACKED BY YOUR IMMUNE SYSTEM IS ALREADY DESTROYED.

THINK ABOUT THAT.

BY THAT TIME, THE TRAIN HAS GONE OFF THE TRACKS.

WHEN WE TALK ABOUT TICK-BORNE ILLNESS, A LOT OF PEOPLE DON'T TEST FOR WHAT YOU'RE CALLING COINFECTIONS, THIS INCREASING NUMBER OF INFECTIONS THAT TICKS CARRY ALONG WITH LYME DISEASE.

AND THE LYME DISEASE TESTS THEMSELVES ARE VERY CONTESTED.

THEY DON'T NECESSARILY DO A GREAT JOB.

IT'S A LONG STORY.

BUT IN MY OWN CASE, I DIDN'T TEST POSITIVE THE FIRST TIME I WAS TESTED.

IT TOOK A COUPLE MORE TESTS AND THEN I FINALLY DID GET A CDC POSITIVE.

SO, YOU KNOW, YOU'RE IN THIS MUSHING MURKY AREA, AND IT'S NOT JUST DOCTORS WHO DON'T NOW HOW TO GO FORWARD, IT'S PEOPLE THEMSELVES.

WHAT YOU DO WHEN YOU CRAVE EVIDENCE AND WANT A PLAN AND DON'T HAVE A CLEAR ANSWER?

THAT'S ONE OF THE REASONS PEOPLE LIVING WITH THESE CONDITIONS END UP TRYING OUT A LOT OF DIFFERENT THINGS AND GOING DOWN MANY DIFFERENT PATHS.

THAT BRINGS ME TO MY OTHER POINT, BECAUSE WE ALSO FOUND FROM YOUR BOOK THAT A LOT OF PEOPLE TEND TO BE PEOPLE WHO ARE DIAGNOSED AT LEAST, OR WHO SUFFER, I SHOULD SAY, FROM CHRONIC -- MISUNDERSTOOD CHRONIC ILLNESSES.

AT THE SAME TIME WE ALSO KNOW NOW THAT A LOT OF MEDICAL RESEARCH IS BASED ON THE MALE BODY AND VERY LITTLE ATTENTION IS PAID TO -- OR GIVEN -- I SHOULD SAY RESEARCH DONE -- ON HOW DISEASES AFFECT THE FEMALE BODY.

DOES THAT LEAVE PEOPLE OPEN OR FERTILE GROUND FOR ALTERNATIVE TYPE MEDICINES?

I DON'T WANT TO SAY THAT ALL ALTERNATIVE MEDICINES ARE BAD, BUT SOME OF THEM, IT LEAVES ROOM OPEN FOR PEOPLE WHO MAY HAVE NEFARIOUS INTENTIONS.

ABSOLUTELY.

THIS IS ONE OF THE HARDEST PARTS OF THE WRITING IN THE BOOK IS I USE IN THE BOOK, IT TELLS MY OWN STORY, MY LIVED EXPERIENCE ALONGSIDE RESEARCH, AND I WAS VERY CAREFUL IN THE BOOK TO TRAY TO SHOW ALL THE THINGS I HAD TRIED BECAUSE I HAD RUN UP THE WALL.

SOME OF THEM, I DON'T KNOW IF I REGRET TRYING THEM, BUT I WOULDN'T TRY THEM NOW.

WHAT I SAY IN THE BOOK THAT I THINK IS REALLY IMPORTANT FOR US TO UNDERSTAND IS THAT WHEN SCIENCE IS SILENT, NARRATIVE CREEPS IN.

IF YOU'RE SICK, YOU'RE LOOKING FOR AN EXPLANATION, LOOKING FOR A STORY.

ALL KINDS OF STORIES COME IN.

THERE'S THE STORY OF SELF-BLAME, THE STORY OF SOMEHOW I DID THIS TO MYSELF, I'M LIVING THE WRONG LIFE.

AND THE STORY OF -- COMMON STORY OF TOXIC MODERN LIFE DID THIS TO ME AND I NEED TO PURIFY MY BODY AND CLEANSE IT.

ALL THESE DIFFERENT THINGS.

BECAUSE PEOPLE ARE SEARCHING FOR ANSWERS, WE TEND TO TURN TO ANYTHING THAT WILL HELP US.

I TRY TO MAKE THE POINT THAT IN A WAY, THIS IS QUITE LOGICAL.

IF YOU HAVE NOTHING OFFERED TO YOU, OF COURSE YOU'RE GOING THE TRY OUT MANY THINGS.

THE OTHER POINT I'LL MAKE IS YOU'RE ABSOLUTELY RIGHT ABOUT WOMEN ARE OVERWHELMINGLY THE ONE WHO IS LIVE WITH THESE CONDITIONS.

THESE ARE CONDITIONS CHARACTERIZED BY DYSFUNCTION OF THE IMMUNE SYSTEM AND OFTEN THE NERVOUS SYSTEM, AND WE KNOW WOMEN'S IMMUNE SYSTEMS AND MEN'S ARE VERY, VERY DIFFERENT.

THINK ABOUT THE BEGINNING OF THE PANDEMIC THAT MEN WERE MORE OFTEN DIEING FROM COVID THAN WOMEN WERE.

BUT WOMEN ARE MORE OFTEN THE ONES WITH LONG COVID, RIGHT?

IT HAS TO DO WITH DIFFERENCES IN THE IMMUNE SYSTEM.

AND WE JUST DON'T HAVE THAT INFORMATION.

AND BECAUSE YOUR IMMUNE SYSTEM IS VERY RESPONSIVE TO STRESS AND FOOD AND DAY-TO-DAY LIFE, I THINK IT IS THE CASE THERE'S A LOT IN ALTERNATIVE MEDICINE THAT CAN BE HELPFUL TO PEOPLE, BUT WE DON'T HAVE A CLEAR SET OF -- PEOPLE WRITE ME LIKE, WHAT SHOULD I DO?

AND I'M LIKE, I DON'T KNOW, BECAUSE THERE'S NO CLEAR PATH.

YOU HAVE TO FIGURE IT OUT YOURSELF.

BUT OF COURSE THERE HAVE BEEN SO MANY -- EVEN THROUGHOUT THE PANDEMIC SUGGESTIONS ABOUT CLEANSES AND TOXINS AND ALL THESE THINGS THAT, IF YOU'RE NOT GETTING IN ELSE, THAT COULD SOUND LIKE THE ANSWER.

RIGHT, AND I THINK WHAT'S REALLY DANGEROUS ABOUT THE SILENT SILENCE, AS I TALK ABOUT IT, AND THE NARRATIVE CREEPING IN, IS SOMEONE WHO WANTS TO SELL SOMETHING TO A VULNERABLE PERSON, THAT PERSON IS AN EASY MARK.

THAT'S ONE OF THE THINGS WE TALK ABOUT.

AT THE SAME TIME, SOME THINGS LIKE ACUPUNCTURE HAS BEEN SHOWN TO BALANCE THE AUTONOMIC NERVOUS SYSTEM.

THE POINT I MAKE IN THE BOOK IS WE'RE ALL TRYING TO MAKE WITH EVIDENCE-BASED ANSWERS THAT ARE WHOLE BODY ANSWERS.

THAT'S THE OTHER THING, IN OUR MEDICAL SYSTEM IT'S SILOED INTO DIFFERENT PARTS OF THE BODY.

IF YOU'VE GOT SOMETHING WRONG WITH OUR IMMUNE SYSTEM THAT CAN AFFECT ALL PARTS OF OUR BODY.

IF YOU HAVE SOMETHING WRONG WITH OUR IMMUNE SYSTEM THAT'S GOING TO EFFECT GLOBAL LEVELS, ALL THOSE THINGS.

WE NEED TO THINK ABOUT PIVOTING TO SYSTEM-BASED AND MOVE AWAY FROM SILOED, I'M GOING LOOK AT YOUR KIDNEY NOW.

I'D BE REMISS IF WE DIDN'T TALK ABOUT YOUR BOOK.

CAN YOU TALK ABOUT THE TITLE YOU GAVE THE BOOK?

IT'S A UNIQUE TITLE, AND I DON'T THINK PEOPLE WOULD ASSOCIATE THE WORD KINGDOM WITH WHAT YOU'D JUST DESCRIBES AN ISOLATING, LONELY, AND PHYSICALLY PAINFUL EXPERIENCE.

YEAH.

SO THE TITLE WAS THE HARDEST PART OF THE BOOK TO WRITE IN SOME WAYS.

IT WAS THE VERY LAST PART TO COME TOGETHER.

I HAD A DIFFERENT TITLE UNTIL LATE IN THE GAME.

THE TITLE IS 'THE INVISIBLE KINGDOM' AND THE SUBTITLE IS REIMAGIING ILLNESS.

I WANTED TO COME TO THE POINT THAT WE THINK OF ILLNESS AS AN ISOLATING EXPERIENCE, AND IT IS.

BUT THESE DISEASES AND MANY DISEASES ARE SHAPED BY SOCIAL POLICY, BY THE COMMUNITY.

I ALSO WANTED PEOPLE READING THIS BOOK TO REALIZE AS LONELY AND ISOLATED AS THEY COULD FEEL -- THIS IS A CALL TO ACTION, THIS BOOK.

IT IS A CALL TO SAY WE NEED TO REFORM OR MEDICAL SYSTEM, WE NEED TO CHANGE THE CULTURE AROUND ILLNESS YOU DON'T RECOVER FROM.

THERE'S A STRONG URGE -- I WAS JUST TALK ABOUT A FRIEND'S CHRONIC ILLNESS WITH ANOTHER PERSON, AND SHE WAS LIKE, WELL, SHE MIGHT GET BETTER.

THERE'S AN URGE TO WANT PEOPLE TO GET BETTER, BUT WE NEED TO UNDERSTAND HOW MUCH CHRONIC ILLNESS THERE IS.

SO THAT'S THE TITLE, AND IT'S DERIVED FROM A WONDERFUL QUOTE FROM SUSAN SONTAG WHO TALKS ABOUT THE FACT THAT WHEN WE'LLE WE'RE ALL BORN WE HOLD CITIZENSHIP IN THE KINGDOM OF THE WELL AND SICK AND I WANTED TO CARVE OUT THIS INVISIBLE KINGDOM AND SAY TOGETHER WE CAN BE SEEN.

I THINK THAT'S A WONDERFUL AND BEAUTIFUL EXPLANATION.

BUT I ALSO WANTED TO POINT OUT THAT YOU DID START THIS BOOK BEFORE THE PANDEMIC, WHICH IT SEEMS -- I MEAN, THE RELEASE OF IT, THERE COULDN'T BE A MORE PERFECT TIME.

BUT YOU STARTED BEFORE THE PANDEMIC ACTUALLY HAPPENED.

WHAT WAS YOUR REACTION WHEN YOU FIRST HEARD ABOUT COVID-19 AND THEN OF COURSE -- I THINK SO MANY OF US WILL NEVER FORGET THAT PRESS CONFERENCE WHERE THE WORLD HEALTH ORGANIZATION SAID, YEAH, THIS IS A PANDEMIC.

SO I WAS DEEP IN WRITING THIS BOOK AND DEEP IN TALKING TO VIROLOGYISTS AND RESEARCHERS.

I WAS LAUGHING THE OTHER DAY, BECAUSE I WAS THINKING ABOUT THE FACT THAT I HAD BEEN SO ANXIOUS A PANDEMIC WAS COME -- BASICALLY IT WAS CLEAR VERY EARLY TO ME THERE WAS A PERIOD COMING.

I WAS CHICKEN LITTLE SAYING, THE SKY'S FALLING.

MY FRIENDS ARE LIKE, WHAT ARE YOU TALK ABOUT?

SO I WAS NOT HAPPY TO BE RIGHT, BASICALLY.

BUT I WOULD SAY IMMEDIATELY, PARTLY AGAIN BECAUSE OF RESEARCHERS I WAS TALKING TO, I WAS REALLY CONCERNED THAT THIS VIRUS WAS GOING TO TRIGGER A KIND OF SHADOW PANDEMIC ALONGSIDE THE ACUTE PANDEMIC, THE CONTOURS OF WHICH WE WOULD ONLY SEE LATER, AND THAT IS TO SAY I IMMEDIATELY SUSPECTED WE WERE GOING TO FIND OUT THIS VIRUS TRIGGERED LONG-TERM ILLNESS THAT WOULD BE HARD TO TREAT AND DEFINE IN A SIGNIFICANT COHORT OF PEOPLE, AND THAT'S WHAT REALLY KEPT ME UP AT NIGHT INITIALLY WAS I -- IN ADDITION TO THE TRAGEDY WE WERE SEEING AROUND US THAT THERE WAS A KIND OF UNFOLDING SECOND TRAGEDY COMING.

AND SO, YOU KNOW, IT'S FUNNY.

THE BOOK TOOK A YEAR LONGER TO WRITE THAN IT WOULD HAVE.

I THOUGHT I WAS DONE.

BUT I SAID I HAVE TO STOP AND START ACCOUNTING FOR AND REPORTING ON THIS VIRUS.

I WAS LURKING ON MESSAGE BOARDS AND ON FACEBOOK AND READING PEOPLE SAY, I GOT COVID SIX WEEKS AGO, AND I'M STILL NOT BETTER.

MY HEART IS RACING, I HAVE STRANGE FATIGUE, THIS, THAT, AND THE OTHER AND I END UP WRITING A LONG ARTICLE FOR THE ATLANTIC ABOUT ONE OF THE EARLY ARTICLE ON LONG COVID.

AND JUST REPORTING THAT PART OF THE BOOK OUT AND THINKING ABOUT HOW COVID FIT INTO THE MIGHT CHANGE THE LANDSCAPE TOOK ANOTHER WHOLE YEAR TO DO.

BUT FELT REALLY IMPORTANT, YEAH.

DO YOU THINK THAT WITH THE PRESENCE OF LONG COVID AND SOMETHING THAT'S TOUCHING TO SO MANY AMERICAN LIVES, THAT THIS CHANGES THE WAY THE PUBLIC VIEWS CHRONIC ILLNESS OR, YOU KNOW, WHAT FOR SOME PEOPLE COULD DROP INTO, YOU KNOW, JUST A CHRONIC DISABILITY?

YEAH.

I THINK UNFORTUNATELY LONG COVID HAS BEEN POLITICIZED IN THE SAME WAY COVID HAS BEEN.

THAT SAID, WE ARE SEEING THAT THE SCOPE OF THE PROBLEM IS UNIGNORABLE, RIGHT?

AND SO IS THE FACT THAT MANY OF THE PEOPLE WHO ARE EARLY LONG COVIDS OR FIRST-WAVE COVID LONG HAULERS THEY CALL THEM, ARE MEDICAL PROFESSIONALS, RIGHT?

BECAUSE THEY WERE ON THE FRONT LINES AND THEY GOT COVID IN THAT FIRST WAVE.

SO I DO THINK THAT THAT HAS FROM THE REPORTING I'VE DONE, A LOT OF MEDICAL PROFESSIONALS ARE TELLING ME, WOW, I DID NOT UNDERSTAND BEFORE MY PATIENTS WHO WERE COMING IN WITH THESE CONDITIONS.

I JUST THOUGHT THEY SHOULD BUCK UP.

ONE SAID THAT TO ME.

SHE SAID, I GET IT.

EVERY DAY NOW IS A STRUGGLE.

SO I THINK WE'RE -- THE OPTIMISTIC SIDE OF THE COIN IS WE HAVE THIS AWARENESS THAT'S NEVER BEEN TRAINED ON THESE DISEASES BEFORE.

WE ARE STILL FIGHTING, I THINK, THE DESIRE TO LOOK AWAY.

RIGHT?

IT'S REALLY SCARY TO THINK THAT AT ANY MOMENT YOU COULD END UP WITH A CHRONIC ILLNESS THAT COULD DEBILITATE YOU.

AND BECAUSE THESE DISEASES ARE INVISIBLE AND HARD TO SEE, UNLIKE, SAY, POLIO TRIGGERS PARALYSIS AND A LIMP, IT'S EASIER TO LOOK AWAY AND PEOPLE WANT TO LOOK AWAY.

SO I THINK AS A NATION, WE DO HAVE TO ASK OURSELVES WHAT OUTCOME WE WANT HERE.

WE ARE STILL ALL AT RISK FROM LONG COVID, EVEN IF WE'RE VACCINATED.

INFECTION IS RUNNING RAMPANT.

ONCE YOU HAVE LONG COVID YOU MAY BE ABLE TO WORKLESS.

THERE WAS A BIG STUDY THAT SHOWED PEOPLE ARE LEAVING THE FULL-TIME WORK FORCE BECAUSE OF LONG COVID.

I THINK THERE'S A LOT OF WORK WE HAVE TO DO AS A SOCIETY NOT ONLY TO WORRY ABOUT OUR OWN PERSONAL RISK OF LONG COVID BUT TO SAY, WHAT DO WE NEED TO DO TO RESEARCH AND TREAT THIS PROBLEM?

AND START TO LOOK AT IT.

IT'S BY LOOKING AT IT THAT IT WILL ACTUALLY DIMINISH.

LOOKING AWAY WILL DO NOTHING.

IT'S JUST GOING TO MAKE MORE TRAGEDY HAPPEN.

YOU KIND OF TOUCHED ON MY FINAL QUESTION, BECAUSE WE'VE GOT ABOUT A MINUTE LEFT.

BUT I'M WONDERING, WHAT IS IT THAT -- NOT MEDICAL PROFESSIONALS, BUT EVERYDAY PEOPLE, FRIENDS, FAMILY, HOW DO YOU SUPPORT SOMEBODY WHO'S STRUGGLING WITH A CHRONIC ILLNESS IF YOU HAVEN'T EXPERIENCED IT AND YOU DON'T QUITE UNDERSTAND WHAT THEY'RE DEALING WITH?

YEAH.

I THINK IN THE INTIMATE INTERPERSONAL LEVEL, THE NUMBER ONE THING IS TO TRY TO OFFER VALIDATION AND RECOGNITION AND NOT TO TRY TO REASSURE OR SOLVE THE PROBLEM.

WE ALL WANT TO REASSURE OUR LOVED ONES, BUT WHEN YOU'RE GRAPPLING WITH A LONG-TERM PROBLEM YOU JUST WANT SOMEONE TO SAY, WOW, I REALLY SEE YOU'RE STRUGGLING TODAY.

A FRIEND A MINE DID THAT AND IT MEANT SO MUCH TO ME.

ON A POLITICAL LEVEL, WE NEED TO LET POLITICIANS KNOW WE CARE ABOUT THIS ISSUE, BY THAT I MEAN THE CRISIS OF LONG COVID, AND WE SEE THIS AS A DYNAMIC PROBLEM OF THE AGE, AND THE RISE OF THESE DISEASES, AND WE NEED TO SAY WE NEED ANSWERS AND FUNDING.

ALL RIGHT, WELL, THE BOOK IS 'THE INVISIBLE KINGDOM: REIMAGINING CHRONIC ILLNESS.'

MEGHAN O'ROURKE, THANK YOU SO MUCH FOR JOINING US AND FOR WRITING A BOOK THAT SEEMS LIKE IT COULD NOT BE MORE PERFECT FOR THE MOMENT WE COLLECTIVELY FIND OURSELVES IN.

THANK YOU SO MUCH.

THANK YOU FOR HAVING ME.

ABSOLUTELY.

> 'METROFOCUS' IS MADE POSSIBLE BY -- SUE AND EDGAR WACHENHEIM III, THE PETER G. PETERSON AND JOAN GANZ COONEY FUND, BERNARD AND DENISE SCHWARTZ, BARBARA HOPE ZUCKERBERG, THE AMBROSE MONELL FOUNDATION.

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