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. 

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[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!       

Introductions

So, I’ve been thinking about making this blog, a blog for people who are dealing with the same sort of thing I’m dealing with: living with Chronic Fatigue/Immune Deficiency Syndrome.  I have my doubts about the medium: I would hate to see communication collapse into an electronic vortex of exhibitionism and voyeurism.  But unlike Facebook (which I love and hate) and twitter (hate), this is at least a chance to give one-sided communication some length and (hopefully, therefore) depth.  The best part about the internet is that it allows us to connect across great distances, and for those of us who don’t get out as much as we'd like, I think we can use it to create community and mutual support.   Also, I’ve been taking a lot of heart in some other CFIDS bloggers who are writing about their daily lives and experiences.  To them, and to you, whoever is reading this, I’d like to say:  Thank you.  Thanks for writing and sharing your stories.  Living with chronic illness is a heroic and mundane struggle, and I’m very interested in how you are fighting it.   I’m trying hard in my life right now to make it positive, productive, and meaningful, even in its restricted state.   I hope that we can trade a little inspiration and strength.