Advice for the Whippersnappers

Sometimes I think about what advice I would give someone who just figured out they have Chronic Fatigue Syndrome. It's the same thing as imagining what I wish someone had told me six years ago. I have made a lot of mistakes in the course of this illness, and I desperately want someone else to learn from them. 

A lot has changed in the last six years, but when I first got sick, there wasn't a lot of information. I didn't think about it in a very logical way. On one hand, I read a lot of sketchy Internet information about cures and ran around to doctors and naturopaths trying to end it. On the other, I bought in to the pseudo-scientific mind-body medicine that essentially says: this is all your fault. I thought that this disease was just my particular form of insanity. I looking for subtle, psychological causes, and overlooked the more physical ways I could manage symptoms, like pacing and rest. There really are things we can do to feel better. Here are a few:

0.    Be brave. This is probably the first thing someone should tell you. They should tell you this while hugging you or holding your hand. This is serious. You are very sick, and you are going to be for a long time. You are going to have to give up a lot, and you are going to be very scared and bitter and desperate. You should expect this. An extraordinary amount of strength is now going to be required from you, but you can do it. Get ready to change.

1.    Don't Push Yourself. Don't do it! This is what someone should yell at you over and over, maybe while you sit on on an examining table in a thin paper gown. I think it takes a lot of drilling to get this understood. We don't live in a society that values self-restraint, or peace, or good judgement. So much of our self-worth is tied up in our achievements, whether that means a career or a degree or the ability to dance all night. We don't know how to be quiet or alone. It's hard, but if nothing else, maybe fear will motivate you; if you don't live within your new limits, you will get worse. If you live within your limits, you might get better.

2.    Strive for Acceptance. This is terribly hard, but necessary. It doesn't mean we think we'll never get better. Why would I emotionally prepare now for five years in the future? No one knows what the future will hold, all we know is that it definitely won't be what we expect. When I get overwhelmed with this illness, it's rarely for the present moment. So don't get ahead of yourself, calm down, and see if you can accept today. One thing I've found to be true is that emotions are finite. Time and again I've been pushed to way beyond what I thought I could handle, and realized that I was handling it, even though it hurt terribly. Gradually, you work through the despair, the anger, and the grieving. They are finite, and I believe that feeling them fully can be the same thing as letting them go.

3.    You are Not to Blame. This should be obvious, but it's not. Maybe to a certain extent everyone is egocentric enough to believe that they somehow cause the external events around them, but we with a disease that science hasn't caught up to yet are particularly susceptible. Illness is a force of nature, like a tropical storm. It happens randomly, to anyone, and no matter how hard you prepare, it might really get you. Stress definitely affects this illness, so pay attention to your actions, but don't worry about some insidious little worm in your subconscious. I assure you, you are not making yourself sick.

4.    Get Religious. That said, "Why do bad things happen to good people, i.e., me?" is the question of the ages. I don't think there is any truly satisfying answer, but some people collapse under the weight of suffering, and some use it to transform themselves into saints. I can't recommend Buddhism highly enough for both a philosophical framework for suffering and a way to deal with it. I'm also pretty into Saint Theresa and Peruvian shamanism. Whatevs. But now that we have time and solitude, which are gifts many people don't have. Let's not waste them.

5.    Get Artistic. And you know what else you can do with time and solitude? You can make art! And in fact, you need to. We can't just sleep and watch NBC sitcoms. We have to do something productive; the will to work and create is a human imperative. It doesn't have to be great art. God knows we can't afford self-doubt and hyper-criticism now. There's a lot of joy to be found in creating things, in expressing ourselves and developing ourselves. In this area alone we are almost not disabled. If you need help getting started, an online class or starting a long-distance project with friends is a good way to keep going.

6.    Make a Schedule. I've always been bad at great swaths of unstructured time, and I think that having specific goals and specific time limits in which to accomplish them is essential. Try to be self-disciplined and make yourself put down that unchallenging entertainment/time-killer and learn French, make electronic music, write your memoirs, meditate, or whatever it is you really want to do. Tell yourself that you will do this-and-such from 3:30 to 4:15 and then follow through. The sense of accomplishment will be worth it.

7.    Be Wary of the Internet. The Internet is great for us and expands our worlds considerably, but there are still places in that expanded world that we shouldn't go. While tooling around searching for keyword "CFS" you will find some truly horrifying repositories for human misery. These are the slums of the Internet, the twisting dark alleyways where you don't want to get caught alone at night. They can be the vitriolic battles fought in the comments sections of CFS articles, blogs of despair and desperation, or pseudo-science websites promising miracle cures. I'm hesitant to imply that people in pain (and people systematically discriminated against) should refrain from speaking their minds, and my writing isn't free from negativity. However, I've found that these websites both suck me in and make me miserable, and I do my best to avoid them. On the other hand, I really want to believe that the Internet can be used as an organizing tool, and to get funding and research, healthy people really do have to know how sick we are and the toll that takes. I guess the optimum here, like in most things, is balance.

As you could probably tell, this is as much me giving myself a pep-talk as much as it is me imagining myself as the wise old sickie giving advice to someone else. There are a lot of issues I didn't talk about, and I realize now that I am incredibly lucky that two of the most insidious secondary aspects of CFS don't affect me. My family and close friends never abandoned me, and since I moved back in with my family, I don't have to worry about money. Those are huge issues, but I don't feel qualified to give advice about them, a fact I thank God for every day. The rest of these little chicken nuggets of wisdom are personal and hard-won, and I do wish I could send them back in time six years to that 22-year-old girl terrified of illness and unsure of what to expect.

New Charity Voting Contest

Hey!  Well, I actually did email almost everyone I know of Facebook and ask them to vote for the WPI and CAA in the Chase contest.  It was a bizarre experience.  I hadn't "come out" to a lot of my acquaintances over the years as sick, and so I went through the friends from past forgotten stages of my life--Philly, Portland, California, high school, college--and thought, "How would they react to this?  Is it worth telling them, and asking them to do a personal favor for me?"  No shame, I did it.  I actually got a lot of nice little Facebook messages back, and lots of votes. We came in 12th and won $40,000.  Not so bad.

Now there's a new and, in my opinion, incredibly confusing charity contest in which WPI stands to win $250,000.  It requires a little clicking around, but if you go to http://www.vivint.com/givesbackproject/charity/769 it will tell you how to vote, which you can do every day until June 11. Let's do a lot of clicking!

Chase Community Giving and Radical Annoyance

 I'm posting this on every CFS blog I read, including my own.  It is a declaration and a call for action!

Most of us probably know that both the WPI Institute and the CFIDS association are in the running to win hundreds of thousands of dollars in grant money from Chase Community Giving.  We know this, and we're voting, right?  Because we're an incredibly strong, vital internet community?  But...only about 5,000 people have voted.  We are getting beaten by a fucking drum corps!  Am I really supposed to believe that more people out there care about a drum corps than about doing research that could potentially save our lives?  I can't believe it!  We have to do something.

Because this issue is so important, I swallowed my pride (I usually think mass Cause Emails are annoying) and emailed all my friends asking them to vote for WPI, and although they love me, only like 3 voted.  So here's my idea and suggestion: I'm going to email or facebook message each of my friends individually, and not care how annoying I am, and ask them again to vote.  I could probably get over 100 votes that way, depending on how many of my friends are flakes.  I'm not talking about just my good friends, I mean even just random Facebook acquaintances, too.  It's annoying, but my friends will forgive me, and who cares what my acquaintances think?

Anyway, like the nature of voting itself, one person doing it alone doesn't make much of a dent, but if a lot of us do it, even if just a few of us harass everyone we electronically know, we could get hundreds, maybe thousands of votes.  Let's do it, and encourage all our sick Internet-addicted friends to do it, and even our healthy friends.  Lets get organized, people!  I'm going to post this on my blog and every blog I read, and them I'm going to spend the rest of the day harassing people, and its going to be awesome.  Please join me!

STEP-BY-STEP Instructions:

1. From your Facebook page, go to Chase Community Giving:
http://www.facebook.com/ChaseCommunityGiving.

2. "Like" Chase Community Giving by clicking on the "Like" button.

3. Now search for Whittemore Peterson Institute for Neuro-Immune Disease, and the CFIDS Association.

4. Cast your vote by clicking the "Vote Now!" button.


Love,

Lee

Life-Changing Literary Experience

Viktor Frankl, 1905-1997

I'm going to go ahead and use the words life-changing without quotes or apologies here, for Viktor Frankl's Man's Search for Meaning.  There aren't many books like this. He asks questions about the meaning of life and suffering that are almost too important to take seriously until it's absolutely unavoidable, but that point of inevitability reaches us all.  This book that gets to the heart of what I'm always asking myself as I come to grips with life in general, and particularly my life with CFS. 

Viktor Frankl has fearsome credentials for talking about the meaning of life. He was a Jewish psychiatrist in Vienna in the 1930s, working on his philosophy of "logotherapy" when he was taken prisoner and sent to Auschwitz. Although he barely survived the camp, he came out of it with his faith in his ideas strengthened: the main motivation of man is not pleasure, or even happiness, but the will to find meaning in our lives. He discovered that the meaning he found in his apparently senseless suffering gave him the will to endure it. He quotes Nietzsche several times in the book: "He who has a why to live can bear almost any how."

"Man's search for meaning" sounds like a vague phrase, but Frankl emphasized that
all meaning is specific and situated. He says, "the meaning of life differs from man to
man, from day to day, from hour to hour...to put the question in general terms would be
comparable to the question posed to a chess champion: 'Tell me, master, what is the
best move in the board?'" He sees three ways to find meaning in life: Through a creative
work or task, through an experience or relationship, and finally, in the attitude we take
towards unavoidable suffering. In our lives, we will alternate between finding meaning
in all three.

Frankl seems to use the word "meaning" where other people might use words like "God"
or "love" or "the best course of action given the circumstances." He comes from a
scientific background, but you can't talk about finding meaning in atrocity without
becoming somewhat mystical. It's easy to see the value of suffering when it ends; you
can go back to your normal life more awake, sensitive and compassionate. But what if
it doesn't end, at least not in this life? In Frankl's mind, if the meaning of suffering were
dependent upon such happenstance as whether one escapes or not, that would render
either outcome meaningless. To find meaning in mortality is the ultimate challenge life
gives us, and one we must accept.

As I read, I found it inevitable, as I imagine most readers would, to compare my life
with his. I hope that for most of us, this experience is futile and surreal. The suffering
he endured in concentration camps is so beyond my experience that I can't actually
assimilate it. It makes me feel profoundly grateful, but at the same time, the feeling is
fleeting. Ultimately, I don't think two people's suffering can be compared. But he didn't
write this book for us to make comparisons; he meant for each of us to examine our lives on their own terms.

I sought out this book because I'm trying to find meaning in a life that's very different from the one I imagined myself leading.  Many of the ways I thought I would find meaning in my life aren't currently available to me. I wanted an occupation that would help the community and give me a sense of pride and independence. I wanted daily interactions with my friends, not to mention some kind of love life, and of course, the elemental pleasure of moving my body through the world. I'm terribly sad that I don't have thosethings.

But there are also many things in his categories that I can do. I've always wanted to
write fiction and make art, which I'm doing now because there aren't many other options
or excuses. I still have my family and friends I can keep in touch with thanks to my best
friend the Internet, and those relationships are more important than ever. I can not let
this disease destroy my soul, and I can be damn proud of that. There are times when
all I can do is lie down and feel pain, and my victory over it lies in not throwing the pain
onto those around me.

I was moved to read about what he had to say about the chronically and terminally
ill. While we look to him for inspiration, he found inspiration in people like us. He was
a doctor and no stranger to the failure of the body. He tells the story of a death from
typhus he witnessed in the concentration camp:

This young woman knew that she would die in the next few days. But when I talked
to her she was cheerful in spite of this knowledge. "I am grateful that fate has hit
me so hard," she told me. "In my former life I was spoiled and did not take spiritual
accomplishments seriously." Pointing through the window of the hut, she said. "This
tree here is the only friend I have in my loneliness.". Through the window she could see
just one branch of a chestnut tree, and on the branch were two blossoms. "I often talk
to this tree, she said to me. I was startled and didn't know how to take her words. Was
she delirious? Did she have occasional hallucinations? Anxiously I asked her if the tree
replied. "Yes." What did it say to her? She answered, "It said to me, 'I am here--I am
here--I am life, eternal life.'"

I'm not dying, thank God, but I can relate to that story. I was spoiled, too. I also take
great comfort in the view out my window, and I wish that trees would talk to me.

May 12...Happened

So, yesterday was the official International ME/CFS Day.  Whoo!  Hope we're not all too hungover to get back on the computer and reflect on our experiences.  I hadn't done any research for it at all, and I was hoping that I could just go to the biggest CFS advocacy sites, and be part of some well-organized Internet campaign.  I imagined sleek memes to post on Facebook, petitions and email campaigns all ready to go.  I found...very little.  Here's what I did.

I put a blue ribbon on my Facebook profile.  So did 26 other people.  Actually, I just put it on a picture which stayed on my wall because I couldn't for the life of me figure out how to make it my profile picture.  Then I wrote an update about CFS Awareness Day.  People on Facebook seem more receptive to my posts about webcomics or humorous observations. 

I joined this campaign and wrote letters about CFS to the President and others.  Real paper letters, sent through the mail.  The idea was that they should get there by May 12, but I was sort of late.  It's tempting to make fun of writing to the President (i.e. the heartbreaking naïveté of a patriotic third grader, a great excuse to use the word "quixotic") but it really can't be the least effective thing in the world.  A sizable staff reads every letter and classifies them by issue, and if mine have now become tally marks by "Chronic Fatigue Syndrome" that's at least something.  I'm sure they take into account that for every letter, a thousand more apathetic people kind-of feel the same way.

On a more uplifting note, these six awesome people protested outside the ME/CFS meeting of the U.S. Department of Health and Human Services on Tuesday, demanding government accountability for allowing CFS to go ignored and unfunded for so long.  Thanks, guys.

And thus concludes another successful May 12.

Healing Through Hating: Elaine Showalter

 

 

 

You all know how much I like positivity.  There are so many great things you can do, lying on a couch all day!  I'm not being sarcastic!  Everything I wrote in my last blog entry still stands, about my extreme happiness and gratitude to find that after several months of resting, I can now usually walk from the bed to the fridge without fear of collapse.  But I'll admit, I do get frustrated at times.  I would like to make it beyond the fridge.  And sometimes, in the midst of an attack of frustration, you happen upon something so malicious, ignorant and destructive that you gain an instant arch-nemesis and a way to blow off steam at the same time.  

My new nemesis is Elaine Showalter, a renowned "feminist" scholar and retired professor of Princeton University, who in 1997 published a book called Hystories: Hysterical Epidemics and Modern Media.   I'm afraid you might know where this is going.  Without any medical training and willfully ignoring the vast majority of medical research, as well as the CDC and the experiences of millions of people, she declared Chronic Fatigue Syndrome to be a modern form of mass hysteria, created by the media and gullible, self-centered women eager to find an exogenous cause for their angst.  For a more in-depth and medically footnoted refutation, see Mary Schweitzer's review.  Showalter equated Chronic Fatigue Syndrome (and Gulf War Syndrome) with alien abduction, Satanic rituals, and multiple personality disorder.  She then made the talk-show circuit, using her Princeton-backed credentials to argue with patients and doctors, promote herself, and attempt to destroy a patients' rights movement.

Showalter has a lot of power as one of the few well-respected feminist writers in the public eye, and one might think that she would use that power to promote the interests of women.  The first lesson of "Feminism 101" might be concisely summed up as: "Listen to women." Instead, she took the self-described experiences of millions of women, women already ill and struggling to make themselves heard, and silenced them in exactly the same way that the patriarchal medical establishment has always silenced women, by calling them crazy, self-victimizing, and hysterical.  A little bit ironic, maybe, a little? 

CFS affects people of all genders, but the lack of adequate health care and recognition is a feminist issue.  Eighty percent of patients are female, and the other 20% share the marginalization of having a "women's disease." CFS affects more women than AIDS, and despite the "statistics" that Showalter fails to cite, does not discriminate by race, location, or socioeconomic status.  I have to wonder, if men suffered in similar numbers, would CFS still get less research funding than hay fever?  Would millions of men be told that they are hysterical?  Would it even be called "Chronic Fatigue Syndrome?"

Another disappointing aspect of the publication of this book is the lack of a widespread critical response.  Most scholars and readers don't seem to question the right of a literary critic to declare diseases imaginary.  I could find only two serious responses, Mary Schweitzer's review and an essay of Peggy Munson's in Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome.  The vast majority of Internet buzz about Showalter is glowingly, gushingly positive.  Even user-generated content sites like goodreads.com don't seem to question her.  "People are crazy," was the pithy review of a reader who gave the book four stars.  Yes, they are!

Hystories came out a while ago, and thankfully, Elaine Showalter has moved on to topics she knows something about, but she has never retracted or apologized for anything she has written about CFS or Gulf War Syndrome.  The book is still read, and the impact it has on the dialogue surrounding CFS is still relevant.  One of the most tragic aspects of CFS is the skepticism surrounding it.  I have known so many people who, in addition to all the myriad difficulties of living with a debilitating disease, have also been abandoned by family and loved ones who are under the false assumption, propagated by Elaine Showalter and others, that CFS is not a legitimate illness.

It's enough to make an otherwise relatively positive sick girl mad.  It's enough to make her seek catharsis by writing, "Elaine Showalter Kicks Sick Women in the Teeth!" on every sycophantic Internet forum I can find.  It might not be the most adult response, but I'm not a Princeton professor.  And when I finally finish my Great American Zombie Novel based on the CFS epidemic, I'm greatly enjoying imagining a scene in which a character remarkably similar to Elaine Showalter is getting her brains eaten, and a character remarkably similar to me coming up and saying, "Oh, stop being so hysterical."

Progress

Well, here's something you don't hear on these blogs everyday...I have gotten better!  I'm pretty sure I can take it to the present progressive and say I am getting better, but I can definitely look back to three months ago and think, "Yes, I am better now."  This isn't capital-B "Better," the misuse of the word that means "cured."  It's just "better" in it's simple, literal form: not as bad.  And "not as bad" is totally great.

I was waiting to make this historical proclamation until I was sure I was right.  I wouldn't want to let optimism interfere with clear judgement.  The course of this illness is so variable, with so many ups and downs, that even if you log your symptoms every day, it can be hard to find a clear pattern.  Improvement is so incremental that you don't notice it over days, or even weeks, but when you look back over months you can see it.  In February, I could basically make it out to the couch for the day and back to bed at night.  Getting up to go to the bathroom or fridge was something that required serious psyching up for; the pros and cons needed to be seriously weighed.  And now look at me!  Making my own tea, going between the couch and the bed multiple times a day, going to the fridge whenever I want.  I don't mean to brag, but last week I did my own laundry.  And that's in the basement.  Yeah, that's right, down the stairs.

If I gave my energy level in February a 1 out of 10, I'd now give myself about a 2.  It's not a great amount of improvement.  I still can't stand up for more than a few minutes, and I don't feel like I can really leave the house, but improvement is improvement, I'll take it!  There's a big difference between a "1" and a "2," between the ability to get yourself a meal and not.
 
I also did something last week I hadn't done in several months, which is hang out with friends face-to-face.  My good friends from Philly, Zem and Jakey, came to disturb my rural Kansan solitude, and it was awesome.  We lied around inside, we lied around outside, and it was a little exhausting, but with frequent naps I could handle it.  Definitely not something I could have done this winter.

The only thing I can credit for my progress is my body's ability to heal itself when I let it. I spent six years trying to fight this illness by pushing myself beyond my body's new limits, until I pushed myself into a total collapse.  The last few months, I have tried not to push myself at all, and to really let myself rest. I am now a bad-ass of resting.  I have rested through boredom, loneliness, frustration, despair, all the things that used to send me running from how my body really felt, and I have also rested through those rare occasions when I've felt alright, those times I used to try to pack with all the things I was missing out on.  The idea is to have some energy left at the end of the day to reinvest in myself, to spend on fighting this illness.

I know I'm nowhere near healthy, but I am heartened by current trends.  I'm going to keep doing nothing as hard as I can.

The Hope Debate

I made this video a month and a half ago, when I was obsessed by the whole hope vs. acceptance thing.  I came out squarely on the side of hope, and squarely against my tendency to over-intellectualize everything.  From now on, I'm letting cute bears-or-whatever-they-are duke it out for me.  

Cliche Wisdom, David Foster Wallace

I read a good book the other day.  If you have some time and a dictionary and want to lie very still for several weeks and have your mind taken out of your body (anyone?), I very much recommend "Infinite Jest" by David Foster Wallace.  It's about a lot of things (it's about...1173 pages long) but part of the book follows former addicts at a halfway house, going to AA meetings and slowly realizing that the tired cliches at the heart of the program, the "One day at a time"s and "Faith in a Higher Power"s insulting their intelligence, are actually the only thing keeping them afloat in a sea of their compulsions and diseases.   

At one point, when Don Gately is in the hospital for heroic injuries, another addict makes him a needlepoint-synthesis of several cliches, which has lately become my personal motto:  "Get well soon, one day at at time, if it's God's will."  I put these words on a dog I found on the Internet to illustrate my point.

 It so happens that I just joined a support group, an online symptom-management class for CFS.  It's less pseudo-religious than AA, but it also employs a lot of cliches that make me want to tear my eyes out.  I have no idea what "Taking control of your illness, so that it doesn't take control of you," means.  But I am finding that following simple advice is comforting, and not very simple when you actually start to do it.  I think about the words on the dog a lot.


Get Better

I can't help it, I am an optimist by nature.  I absolutely believe that I will get better.  There are no amount of discouraging statistics or horrific stories that will dissuade me.  I don't know if I'll get all the way better (for some reason the phrase "get better" is never taken literally), but I do think I will get somewhat better.  I think I can get back to where I was a year ago, the glass overflowing, half-full of health. 

Soon

Well, it probably won't be soon.  This seems to be a lifelong infection, and the stories I hear of recovery and remission all have in common a geologic time scale.  They say that progress isn't apparent day-to-day, or even week-to-week, but over months and years, healing happens.

One Day at a Time

This here is the cliche of cliches, the one true self-opthalectomy-inducing platitude that I used to hate with a blood-spitting passion.  Yes, days occur individually! They follow one another in sequential time!  What bearing does that possible have on me, my sickness and misery?

But actually, this is really important.  When I get overwhelmed with my illness, it usually isn't that I'm sick right now.  It's the imaginary projection of the illness indefinitely into the future.  I imagine being sick forever, and that is the unbearable thing.  I used to think that acceptance, the most basic and important step a sick person can take, meant acceptance of a lifetime of illness.  And I could never do that.  But I don't need to "accept" the future, because I don't know what the future will bring.  I can accept that I'll be sick today, probably tomorrow and on for a while, but worrying about what's going to happen years from now is completely unnecessary.  I can think of things that I am able to do, today, that will make me happy, today, and leave the rest alone.  If the days don't really add up to something greater than themselves, there's nothing wrong with that. 

If It's God's Will

I'm not really into believing in things I can't see.  I'm not going back to acupuncture school because of the lack of evidence that it actually works.  See two posts ago for my opinion on the spiritual principles of hippie doctors (it's low).  But nonetheless, there are things I believe in for no rational reason, simply because I feel that they're true.  I believe in them because I believe in them, okay?  It's the second rule of tautology club.

When I got sick this time around, real sick, I did my share of fist-shaking and God-cursing.  But really, you can only do so much of that before you start feeling ridiculous.  There's no shortage of pain in the world; "Why, God, why?" has no answer.  I tried my best to dispense with the self-pity.  And I found that, even though the amount of horror and suffering in the world is in no way rationally reconcilable with any idea of a benevolent "God," I still feel guided, and supported, and graced.  So I don't choose to believe, but just sort of happen to believe, that there is a divine logic at work that I can't understand, "Karma" or "God's will" or whatever.

To me, this means that even though shitty things are happening, they aren't necessarily things going wrong.  Who am I to know what's ultimately best for me?  Even if I'm not being "productive" in the outside world, I'm doing what I can to face this illness with as much dignity and equanimity as possible; maybe that's what my life's supposed to be about right now.  And even if chaos and entropy rule the universe, why react differently?  Why not, you know, try to be happy with what you have? So even though I particularly hate the phrase tossed around in certain circles, "Bloom where you're planted," and wish I would never again see those words in that particular combination, I must admit it makes a certain amount of self-evident sense.  And like following the advice of most of these cliches, what choice do you actually have?

A measured and Calmly-Worded Letter to my Doctor

This is a letter I wrote and actually sent to my doctor.  I felt pretty good about it.  I'm putting it on my blog.

Dear Ms. Doctor,

I doubt you'll remember me.  I came into your office sometime in January about tendinitis in my wrist, and I've been thinking about the interaction we had ever since.  I hope you take this letter in the spirit in which it is written, which isn't out of anger or hostility at all, but a sincere desire for better understanding. 

The day I saw you, I wrote on my medical history intake form, under the question about ongoing illnesses, "I've had Chronic Fatigue Syndrome for six years."  You read my form, and then looked at me and said, "So you seem really healthy."  I was shocked, and I didn't know what to say.  I had only come to see you about my wrist and didn't feel like making a speech, so I just said, "Yeah..."   It was an expedient lie that I wish I hadn't made.

The truth is, I'm one of millions of people in this country who have Chronic Fatigue Syndrome.  Despite its pejorative name, this is a very serious illness.  The first five years or so, I was actually wildly healthy for a person with CFS; I was about 50% functional, able to work part-time and have an active social life.  I spent the other half my time in bed feeling like I had a terrible flu.  Then my condition deteriorated, partly because I pushed myself too hard (moving, grad school), and for the past several months I have been almost completely bedridden.  I am able to rally every so often, like when I came to see you about my wrist, but then I pay for it later.  

The purpose of this letter isn't to blame you or to complain, it's to raise awareness about CFS.  CFS is twice as common as multiple sclerosis, and more common in women than HIV.  The etiology is unknown, but most scientists believe it is caused by a virus, possibly the retrovirus XMRV, but this research is still fairly new.  Researchers at the University of Miami and the Medical and Dental University of New Jersey have both found biomarkers for CFS in recent years.  Even so, most doctors aren't educated about it, or even more insidiously, believe that it is a psychological condition.  I assure you it is not!  For more information about CFS (also known as Chronic Fatigue Immune Deficiency Syndrome and myalgic encephalomyelitis) you can go to the CFIDS Association of America's website, http://www.cfids.org/ . This is a great review of the state of CFS research, statistics, and professional resources.  

Over the last few months, I kept thinking of how I didn't respond to your statement with the sad and uncomfortable truth, and the effect that will have on your next CFS patient.  There isn't a lot I can do about my condition, but raising awareness and promoting correct information is the first step towards a cure.  Thank you for taking the time to read this letter and think about CFS. 

Sincerely,

Lee Davis

Disbelief

1.        

I've been thinking a lot lately about the disbelief surrounding CFS, and the effect it has on us patients.  This is changing!  But for the past 25 years, CFS patients have been ignored, patronized, and psychologized (this is a word) by the medical establishment and the media. We've all probably had the experience of being told our condition is psychological, not somatic, in origin.  Even if we have good doctors and a supportive family, there's still an atmosphere of skepticism surrounding CFS, where the proof is on the patient that we’re sick and not crazy.  The insidious thing, at least for me, is that it's hard not to absorb this disbelief and start disbelieving ourselves. 

I love medicinal science.  It can do amazing things, and I'm holding out hope that it will do amazing things for CFS.  But it's also badly organized, immorally profit-driven, inaccessible, and arrogant.  Because scientists don’t understand this illness yet, they assume it must not be real.  Even if some doctors believe us, most can’t help, and so we go on to alternative medicine.

I also love alternative medicine.  Its practical advice and holistic approach have helped me immensely. Nutrition, Qi, herbs, and considering the effect of mental health on physical health are nothing but super-great.  But there is an undercurrent of hubris in the alternative medical field as well; there is an idea that just because mind and body are intertwined, the mind must have power over the body.  We must be able to heal ourselves every time.  

This kind of thinking conflates physical health and spiritual growth, and tends to see the illness as a metaphor.  Sore throat?  Maybe you’re not expressing yourself.  Cataracts?  You must lack vision.  And Chronic Fatigue Syndrome!?  Who knows what that’s all about, but you must be doing something wrong.

If there is a dichotomy in Western medicine between body and mind, there’s also a dichotomy in alternative medicine between the mind/body connection and the fact that physical illnesses need physical treatments.  No one would treat MS or AIDS like that, but because the etiology of CFS is unknown, the crackpot theories fill the void.  Once again, the patient is told that her illness is not real, this time under the patronizing guise of spirituality.  Once again, the victim is blamed.

Blaming the victim is a pretty universal concept, sadly.  We don’t want to live in a chaotic world where bad things happen to people who don’t deserve it.  That would be scary!  It makes us feel better to think that a person with a debilitating disease that no one understands is somehow responsible for it.  This phenomenon has only been made easier by dubbing CFS the “Yuppie Flu.”  Actually, just like most other diseases, poor people and people of color are at higher risk.[i]

The truth is that illness is a force of nature.  We do what we can to prevent and treat it, but ultimately it’s out of our hands.  The very first thing we need to do is accept it.  This is the key to sanity and the first step toward healing.  But acceptance is hard when you are supposedly the cause of your own suffering.  I know I ran myself ragged for years trying to prove that I didn’t want to be sick.  I think a lot of us do that.  We waste our energy and money, we rack our brains wondering if there are deep dark subconscious forces undermining our lives.  We push ourselves harder, and make ourselves sicker, or we lose trust in ourselves completely.  

Acceptance is radical.  It means we embrace our lives, every aspect of them, even the horrible and scary parts.  It's so hard to say "Yes, this is my chronically ill life, and I'll take it by the balls anyway, and make the most of it." But what choice do we have?  The hippie doctors say that illness is a spiritual defect.  That's not true.  But illness can be transformative, if we make it so.  It can put our life in sharper focus, force us to abandon the bullshit we don't have the energy for, awaken our compassion, make us treasure our family and friendships.  I won't go so far as to say illness is a gift; there are a lot of other ways to become a better person.  When I haven't left the house in a month, "personal growth" seems like a particularly bitter consolation prize.  But still, we don't have a choice.  Let's learn from this experience, let's embrace it as much as we can.  


And that is almost impossible to do when you are worrying that any positivity about being sick, seeing any possible gains from it, might be part of an insidious subconscious attachment.  "Do I want to be sick because I want to grow?"  No!  Don't listen!  Something horrible and beyond our control is happening to our bodies, and staying postive about is an incredibly brave choice.  

So let's change the dialogue.  Like I said, I really see it happening.  I hope people getting sick now are spared the years of confusion and misunderstanding that so many of us went through.  It’s sad that we get excited about simply being believed about the legitimacy of our illness, but after 25 years, it’s about time.  It’s the first step towards a cure. 

---

[i] Dinos, Sokratis; Khoshaba, Bernadette; Ashby, Deborah; White, Peter D.; Nazroo, James; Wessely, Simon; Bhui, Kamaldeep S. (2009). "A systematic review of chronic fatigue, its syndromes and ethnicity: prevalence, severity, co-morbidity and coping.". International journal of epidemiology 38 (6): 1554–70. doi:10.1093/ije/dyp147. PMID 19349479.

Mixed Feelings

A little CFIDS street cred:  I've only left the house once this month.  It's been about two and a half months since I had to leave acupuncture school and come back to live with my parents.  I've been sick for about six years.  I'm writing that hoping that one day I can look back on it and shake my head and whistle. 

Since becoming bedridden, I've immersed myself in this strange community we have.  I've been reading a lot of blogs, personal stories, manifestos, and scientific research.  It's been good, and I wish I'd done it earlier, but it's also been hard to read the stories of people who are suffering so much.  I've been inspired by people struggling so bravely, and who are finding peace with their situation, but I've also been terrified when I read about people like me who are contemplating suicide or flailing in despair.  Not that flailing in despair isn't an okay thing to do sometimes!  But it's a little close to home.

Part of the reason that I didn't want to "join" this community is that I didn't want to identify as sick.  I've read Eli Clare and people who talk about disability as an identity group, but I wasn't convinced that something as negative as a disability makes a good basis for an "identity."  Also, who wants to identify as sick?  I want to define my life in terms of what I love, not what binds me.  Especially with this illness, who so many people discredit as being psychological, it becomes really important not to seem like you want to be sick.

But then...we are sick.  Magical thinking isn't going to change that.  And there are a lot of people out there who don't want to define their lives by their illness, at the same time that their lives are severely circumscribed by their illness.  Nothing I am thinking hasn't already been thought of by a LOT of ill people in the world, and hearing what they have to say about it has helped me. 

I also went through a sort-of revelation after reading an extremely intelligent critique of the way CFIDS is portrayed by media and both the mainstream and alternative medical establishment, in Peggy Munson's (see my rave about her in my last blog post) Stricken.  And here it is: I have been buying a lot of bullshit!  It's not my fault that I'm sick!  It seems like a pretty straightforward assertion, but I still blamed myself until fairly recently, until reading what other sick people have written about it.  Hippie doctors saying that we can always heal ourselves, and the complementary notion that our inability to heal ourselves is a spiritual deficit, that CFIDS is a metaphor and entirely within our control...that's bullshit!  Duh!  Thanks, everyone! 

So it's been good, reading all this. I'm going to keep doing it. We're a community whether we like it or not.  Though maybe on the really bad days I should limit my intake of other people's suffering. 

New Hero!

Holy Shit!  I mean, I know that no-one reads this blog, but if you happen to be a person reading this, have you checked out Peggy Munson?  Because I think you should!  She's a writer, artist, activist, and invalid of the queer/Chronic Fatigue Syndrome type.  I just happened upon her blog from another blog, and it is seriously inspiring. 

The idea that we can take a lot of inspiration and tactics from the AIDS movement is right on.  How many of us have read endless articles about CFS/ME and XMRV research not getting taken seriously and just felt so defeated and helpless?  I know I've thought many times that it would probably be better for my mental health to just stop reading them entirely, stop paying any attention to the medical establishment, and just get on with my sick life as best as I can without hope for getting better.  Acceptance is great and all, but science and medicine have real potential for helping us.  Particularly now, since discovery of XMRV and the growing scientific consensus that this is a viral condition. 

Read Peggy Munson's eloquent appeal to get active in whatever creative ways we can come up with from our beds and houses, using the history of AIDS activism as our guide.   She has also started a documentation and visibility website called the The EXit Project, along with editing a book called "Stricken: Voiced from the Hidden Epidemic of Chronic Fatigue Syndrome." 
 

The Story of my CFIDS

I've edited this a little since I first posted it.  It's still a "story" but I'm very adamantly opposed to making illness a narrative.  It's a shitty thing that happens, and we try to fit narratives to it, and discard and change them as they no longer apply.  Here is a sequence of events occurring over time.

I first started getting sick in the fall of 2004, when I was 21 years old.  As sometimes happens with this illness, it set in slowly, during a terribly stressful year of my life.  In another state, my parents were getting a messy divorce, and my mom (at least in my perception) was falling apart.  It was a weird time in my life for all this to be happening.  I was far away, and I was almost an adult, but not really.   It was loss of a family that at the time I didn’t think much of, that I had been trying to get away from, but I needed them more than let myself know.  Instead, I got sick 

At the time, I didn’t think a lot about health, or value my body very much.  I’d always been an unathletic kid, who put much more value on her brain than her body.  My body was a kind of machine that carried my mind around.  And I was vegan, which couldn’t have helped things. I was a stressed-out insomniac.  Eventually I got tonsillitis and a tonsillectomy that February, on my 22^nd birthday.  It didn’t help, and I continued my descent.

Looking back on it, my parents’ divorce and my reaction to it were definitely the reasons I first became sick, but they aren't the reason I’ve stayed sick for all these years.  At the time, when I thought I was SO SICK, I didn’t know what sick was.  I was still a full-time student, I played in bands and made art with my friends, and felt indignantly deprived if I had to spend even one weekend night at home in bed.  I rested the absolute least amount possible.  I made it through the year, resolved some of my bad habits and, somehow, got better.   I had a full-time job that summer and then finished my last semester of college. 

The whole time I skimmed the surface of illness, but I never fell in completely until a year and a half after the initial onset.  In my typical fashion, I went skipping down to New Orleans, to do some of the most stressful volunteer work of my life, and all my previous bad reactions to stress came back.  I ended up getting sick (typical flu-like symptoms, as usual) and going back to my mom’s house in Lawrence, Kansas, to “recover” and figure out what to do next. 

I didn’t know yet that the state of sickness I had found my way into would become more or less permanent; for months I kept thinking it would go away in a week or two, and I planned my life accordingly.   I moved in with some friends in Portland, Oregon, and tried to have a normal life amidst the dawning realization that I was really, actually, persistently sick.  I threw myself into the study of every kind of alternative medicine possible (I considered allopathy to have already failed me) and began to realize (there’s only so much crying one can do in doctors’ offices) that I needed to process some of these old emotions that had contributed to my illness in the first place.  It was a revelation.  I let myself feel things, and felt them leave my body.  I was absolutely certain that this was how I was going to get better.  I thought my illness had existed to teach me a lesson, to put my back in touch with my body, with my family and my emotions, in a difficult but poetic way. 

The narrative arc was perfect, but it turned out to be (obviously) fictional.   It was a nice story while it lasted.  That was four years ago.   Since then, I’ve seen doctors, naturopaths,  acupuncturists, and therapists, who have diagnosed me nutritional deficiencies, hypothyroidism, depression, candida, adrenal fatigue, karmic debt, craziness, or nothing at all.  I’ve taken prescriptions, herbs, supplements, and hormones.  I’ve slowly gotten sicker, which is scary.   I’ve been sick in bed most of the day, most days, for several years. 

When I moved to Philadelphia, two years ago, I decided that I wasn’t going to try to get better anymore.  I would stop running around to doctors, trying to get a diagnosis.  It was too costly, financially and emotionally, and I was just going to focus on what I could do, with exactly the amount of health I had.  I started drawing and writing, two excellent activities to do from bed, and I tried to start playing music again but found it a little bit beyond the reach of my energy.   I spent a lot of time at home, and tried to make my home a good place.  Every so often I would freak out and try to find some naturopath with The Answer (inevitable failure), but on the whole I stuck to my guns and my life got exponentially better.  Not easy, or healthy, but much, much better. 

Somewhere along the line I stumbled upon the idea of becoming an acupuncturist, because acupuncture has helped me (for pain and insomnia), and because I think I could do it as a job. (I’d been working online and doing eight hours a week of tutoring.)  I moved out to Oakland this September, and started acupuncture school.  It was WAY too much.  Once again, I’ve over-estimated myself, and crashed, hardcore. 

I’m sick with something that feels like a constant flu, but mostly I just feel exhausted.  I’m exhausted from moving across the country and being a student, but mostly from the many years I’ve spent in constant struggle against the confusion, despair, and isolation of having a debilitating, unexplained illness. 

But what can you do?  You do what you can!  You go bravely forward, which is what I fully plan on doing, but I’ve also come to a radical (to me) decision: to go bravely backward for a while.  Going home (to Lawrence, Kansas) and getting taken care of by my family (I’m 28 now, not old yet) has always been the epitome of giving up and giving in, and one true goal to avoid in this clusterfuck of a disease.  But I’m tired of trying to be strong, of going beyond my limits for some idea of making it on my own.  Reading back over the course of my illness, it’s been so apparent that even when I tried to rest enough, I couldn’t.  I couldn’t stand being alone, or doing nothing.  I think now I maybe can, a little bit more.  I don’t want to say that I think it will cure me, but I think it’s worth a shot.  I’m going to try.  And for the sake of assuaging boredom and isolation, I’m going to write about it.  Thank you for reading!