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I had a couple of alternative titles in mind.  Like "Pain:  Every Second of Every Hour of Every Minute of Every Day."  Or "I Feel Like an Eighty-Year-Old Woman."  Both true.  But I finally settled on the one that I hear all the freakin' time:

"But you look so normal!"

It's usually tinged with disbelief, sometimes laden with open skepticism.  How could someone like me possibly be sick?

And they're right - sort of.  By most benchmarks - heart rate, blood pressure, blood glucose, other indicators - I'm extremely healthy.  My diet is very healthy.  My weight is pretty good; I put on 15-20 extra pounds while I was away from home taking care of Mom (because I didn't have access to healthy, unprocessed foods), but I've lost most of it.  And at a fine-boned 5'9" or so, it looks like less on my frame than it actually is.  My skin is good, at least superficially:  relatively few wrinkles for my age, courtesy of good genes, having quit smoking, and the fact that I drink water by the gallon. Enough physical strength to lift 50-pound hay bales or a 100-pound dog, when needed (although I pay dearly for it every time I do it).  I don't use a wheelchair; I walk (mostly) normally, without a cane.

So what the hell is the problem?

KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.

Now before I get started, want to make something very clear:  None of what I write here today should be taken as a plea for sympathy.  I'm actually very fortunate, not only in that I can still function to a significant degree, but generally.  There are no guarantees in life, and it's sure as not hell not fair (witness the fact that Bush and Cheney are still walking around free and raking in money).  There are many, many Kossacks who endure far more than I on a daily basis - and probably with a much better attitude.

My purpose here is really two-fold:  1) to provide information and perhaps new avenues of investigation for readers who might be suffering similar problems, but have not been lucky enough to get any kind of diagnosis; and 2) to remind readers who are lucky enough not to face such issues that many disabling conditions are invisible, and that those people you might assume are goldbricking hypochondriacs may actually suffer quite badly - and it's not in their heads.

Now, imagine, as I said above, living every second of every hour of every minute of every day with pain.  And I'm not talking about the kind of pain you get when you develop a headache or strain your back or stub your toe.  I'm talking about the kind of saturating, all-encompassing pain that affects every major joint system, every major muscle group, and nerve endings throughout your entire body.  I'm talking about the kind of grinding, bone-deep joint pain; connective tissue pain around every joint; deep-muscle pain and spasms; shallow muscle and mysofascial tissue pain; sharp, stabbing, burning nerve pain and numbness.  All over your entire body.  All the time.  No respite.  No relief.  And with it, the kind of chronic, enervating, brain-numbing fatigue that makes it impossible to function.

This is what I battle every single day.

This is my life.

When I wake up in the morning, it falls into the excruciating category.  Every joint is screaming at me; every muscle is stuff and taut.  Most mornings now, I'm up fairly early - because once I'm awake, the pain's too bad to lie there very long.

Getting up is a process, though.  Everything has stiffened up, and it takes conscious effort to force my limbs to do my bidding.  I usually sit on the edge of the bed for a moment to get my bearings; I know my balance is going to be badly off, and there's no point in trying to leap out of bed just to crash to the floor.  When I finally stand, I hobble like an old woman:  My feet are partially numb on the soles, and I have that horrible pins-and-needles sensation stabbing through them.  My knees haven't unlocked completely, and my shoulders are hunched.  My balance and gait are that of someone who's ninety - and probably drunk.

Generally speaking, during the night, my hands have closed into fists, and I have to work to open them.  It takes a bit for them to loosen enough to open the bottles that contain my pain meds; on especially bad days, I have to pry them open with the opposite hand.  They don't look particularly abnormal - the joints aren't, to most people's eyes, visibly swollen - but I know better.  I used to have "model's hands" - long, slender, tapered fingers with naturally long, perfectly-shaped nails.  Now I see the twisting of my index fingers, the widened knuckle joints, and I feel the constant grating, locking, and popping of the joints . . . and the constant pain.  My left ring finger is the latest to worsen; over the last few months, it's been giving me a lot of trouble, especially in the mornings.  Like this morning.

Of course, mornings around here are especially busy, so I generally have to be functional fairly early.  This means that I get up early, taking Tramadol and Ibuprofen to take the edge off the pain and let me work my joints into some semblance of flexibility, and Adderall to take the edge off the chronic fatigue that accompanies the constant pain (and to help me concentrate, since my illness causes a version of ADD).  Then it's basic chores:  breakfast, dishes, general straightening of the house; we split morning animal maintenance, but on days the he goes into the shop, I much out the horses' pens and stalls.  It wipes me out - but it's also good exercise, which is crucial for those of us afflicted with these conditions.  And I do it rapidly enough to get my heart rate up, so that I get some cardio benefit, too.

Now, lest you think that it's merely a question of not getting enough exercise - or that exercise is the answer - let me disabuse you of those notions right now.  Exercise is crucial, yes.  It helps with flexibility, which in turns helps lower pain levels.  But it also causes other reactions in my body, and I pay dearly for it.  I have to be careful to balance what I do so that it doesn't overload the circuitry, so to speak - and there are days that I can't do anything at all.


Most lay people don't have any frame of reference by which to understand a condition like mine.  They have some vague notion that their immune system protects them from getting sick, and probably understand that an immune system that doesn't work won't prevent them from getting sick.  What they don't realize is that if your immune system works too well, you can get sick - sick in the sense of developing illnesses, diseases, syndromes, conditions, pick your label that can create even greater dysfunction and disability.

When most people think of immunity, they're actually thinking of acquired immunity:  the sort of immunity you develop (you hope, anyway), say, after having had chicken pox, or the sort that you develop from a vaccine.  On the other hand, you're born with an autoimmune system.  It's what identifies invaders in your body, such as viruses and bacteria, and tells your body to fight them.  But what happens when that autoimmune system malfunctions, and begins recognizing everything - including your own body - as an invader?  You get my condition.


When you get sick, it's not usually the bug itself that makes you feel so miserable - it's the side effects of the immune response.  Here's an example:  Say you're allergic to ragweed.  During ragweed season, what happens?  You get exposed to it, and you immediately get congested.  Your nose if stuffy, you sneeze constantly, maybe cough, maybe have sinus pain, your eyes itch and water.  All those symptoms?  those are your body's immune response kicking in to fight the allergen.  And the effects of them, generally, are termed "inflammation."  (Incidentally, when you get a cut on your hand and the skin turns red and swollen, that, too, is your body's immune response kicking in, and it, too, is inflammation.)

It's also what allergic response is.  At bottom, an allergic reaction is nothing more than inflammatory response to protect the body from a foreign and/or toxic substance.  It also explains why those of us with autoimmune disease also tend disproportionately to have multiple allergies.  The allergens can be anything:  pollen; dust; mold; animal dander; foods; medications; chemicals; preservatives; substances like gasoline for your car; cleaning agents; you name it.  A lot of us have allergies that fall into several or all of those categories (in my case, it's all of the above).  And there's a strong link between aggressive allergic response, autoimmune disease, and conditions like multiple chemical sensitivity.

Now, multiply a normal immune - i.e., inflammatory - response by . . . oh, say a factor of ten or so.  That's what happens to people like me with autoimmune disease:  Our immune systems rage out of control.  Unfortunately, with us, it doesn't stop with a hyperaggressive response to allergens, germs, or other external agents.  Our immune systems turn on us, seeing aspects of our bodies as foreign threats.

Essentially, that's all autoimmune disease is:  Inflammation raging out of control.


Chronic Epstein-Barr Virus Syndrome (CEBV) goes by multiple names, the most common of which is chronic monovirus.  It also, according to far too many practitioners, does not exist.  This is one issue where I have zero patience; I went through too much misery for too many years.  I'm living, breathing, walking, talking, blogging proof that it does exist - and if you've had mono multiple times and a doctor tells you that's impossible, s/he's an idiot and you need a new doctor.  Period.  

Some people - and some medical professionals - use (CEBV)and "chronic fatigue syndrome" (CFS) interchangeably.  CEBV is indeed, in part, a chronic fatigue syndrome, but there is a form of CFS that does not have the EBV component, so it's more accurate to label them individually.  So what is CEBV Syndrome?  Well, first, let's look at the underlying virus, the Epstein-Barr virus.

Named for the doctors who first categorically identified the virus, Epstein-Barr is the mononucleosis virus.  It's a variant of herpes, just like herpes I and II, chicken pox, and shingles.  It used to be called "the kissing disease," under the mistaken theory that it was spread mostly via kissing (in part because it's so common among teenagers).  It tends to be identified with teenagers in part because for many of them, it's the first major illness they've ever had (of the kind that lands you in bed, or even the hospital, for days or weeks); because they tend to be "run down" from hectic schedules, poor eating habits, and too little rest; and because their bodies are changing so rapidly that it makes them vulnerable to certain conditions.  

Now, most people who contract mono get it once, and never again.  Why?  Because they have healthy immune systems that kick in and do their job; they develop a natural immunity thereafter that makes them resistant to subsequent exposure.  But there's one thing to remember about a virus:  Unless it's killed outright, it's still in your system, even after you recover.  And if your immune system is sufficiently weakened, or sufficiently overstimulated, the virus can grow stronger, flare up, and create nasty effects.  

As a kid, I was always sick.  If a bug floated past a mile away, it would somehow sense my presence and detour to take up residence in my system.  Flu, strep, bronchitis, you name it. Some years, I missed as much school as I attended.  My first diagnosis of mono came at age 15, and I was out of school for three weeks.  I had classic symptoms:  the second-worst headache I'd ever had in my life, emanating from the back of my skull; sore throat; respiratory effects; hugely swollen lymph nodes; enlarged spleen.  The doctor did the blood test (called a "mono spot") based mostly, I think, on my age, then sent me home to bed.  In another day or so, the fatigue hit - and it was fatigue unlike any other (at that point in my life).  Bone-deep exhaustion.  Heaviness and lassitude in my limbs that made lifting a glass of water too much of a chore to bother.  The need to sleep eighteen hours a day, and still never feeling rested.  Textbook case.

The next year, when I was a senior, I developed the sledgehammer headache, the sore throat, and the stupefying fatigue, and I knew what it was; there wasn't even a question.  Except according to the doctor, there was zero chance that it was mono, because it was (he said) only possible to get it once.  He refused to do a blood test.  Instead, he decided that I was looking for attention, and told me that if I ever "needed someone to talk to" (á la psychiatric help, never mind that he was a GP), I could come to him.  Predictably, I was out of school and in bed for two weeks.  I never went back to him again.

Freshman year in college.  Two years later.  And a couple year later.  No, no official diagnoses; no health insurance, and I couldn't afford the labs.  But I knew what it was.  And once I had health insurance (for a brief, glorious few years of my life), I did get it diagnosed, repeatedly:  Every two years, on average.  And I learned from far better doctors that the notion that you couldn't get mono more than once (or chicken pox, or mumps, or measles, or any disease to which we're supposed to develop natural immunity) was dangerous bullshit.  

Now, of course, the mono virus has a "real" name, and we know that there is a chronic form of it, which is CEBV Syndrome.  But there are still practitioners like my doctor in high school who insist that it doesn't exist, that it's all in our minds, that we're hypochondriacs looking for attention.  

Yeah.  They say that about my other autoimmune conditions, too.

Still, nobody recognized what was really going on.  Of course, back then, there probably wasn't a name for it anyway.


I spent high school sick.  I spent college sick.  It took years to get that damn degree, but I did it.  And went on to law school - and missed five weeks of my final semester with another bout of EBV.  I contracted strep - in freaking July - and feverishly shivered my way through the three days of the bar exam, warehoused like cattle in an ice-cold convention center.  (Yes, I passed.  To this day, I don't know how.)

I got a job as a policy wonk, which I absolutely loved.  Things were going along nicely when my fiancé announced, after nine years together, that he was leaving:  He didn't love me anymore, and couldn't love me ever again.  Just like that.  And when my health worsened months later, I mistakenly attributed it, for far too long, simply to breakup-related stress.

Several months later, I had to travel to New Mexico for a conference.  Since I'm one of those people, natch, who always catches whatever bugs my fellow airline passengers are carrying, Mom suggested that I get my flu shot before my trip.  So I did.

Big mistake.

The doctor asked me whether I'd had a reaction the previous year.  A little redness; a little bit of a scratchy throat.  Nothing major.  Okay, she says.  That's normal.  Are you allergic to eggs?  Nope.  Okay, you're fine.  Here's your shot; you're set for the winter.

I flew to New Mexico.  And something odd began to happen:  Every morning, up awakening, my arms, hands, legs, and feet were completely numb.  From mid-upper arm to fingertip, and from mid-thigh to toe.  I could work out the numbness after a bit - but it's weird.  Stress, I think.  And travel.  And not enough sleep.  Gotta work on my cardio when I get home.

So I flew back to New York City - and the numbness got worse.  It no longer happened only after a full night's sleep, but after any sleep at all.  Ten hours; ten minutes.  Didn't matter.  Of course, by then, I'd become so fatigued that I'd have thought I had another mono relapse, but for the fact that I had no other symptoms.  Stress, I tell myself.  Overwork.  Not enough sleep, not enough exercise, not eating right.  Gotta do better.

And then I'd find myself sitting on the couch in front of the TV, waking up.  I'd fall asleep without realizing it - and wake up 20 minutes later, with full glove-and-stocking numbness.

Then it started happening at the office.  I'd find myself waking up with my hand still on the external mouse of my desktop computer.  That was freaky; thank God nobody ever saw me.  

In addition to the numbness, I started feeling weird sensations in my limbs.  Paresthesiae, I eventually learned they're called.  The syndrome that causes them is called neuropathy.  Common in diabetics, cardiac patients - people with circulatory issues.  Not at all common in people like me with good circulation.  But at this point, I didn't know that.  All I knew was that I was getting these sharp, stabbing, shooting pains and sensations throughout my limbs.  I still have them, by the way; now, they're a constant companion.  Sometimes it feel like an electric shock; sometimes like I'm being stuck with pins and needles; sometimes as though bugs are crawling on - or under - my skin.  What's really bizarre is how acclimated I've gotten to the sensations:  Sometimes when I'm working outdoors, the sensations will eventually penetrate my consciousness and I'll bother to look down - and be shocked that for once there actually is a bug crawling on my leg.

Finally, the cumulative effects were too much.  When I went for a regular doctor's visit, I told her about the numbness.  She said instantly, "Pinched nerve.  Here's a really good chiropractor."  So I went dutifully to the chiropractor.  

Before he did a single adjustment, he sat down and talked to me - for more than an hour - about my symptoms.  Lots of questions.  Lots of specifics.  At the end, he says to me, "Well, there's good news and bad news.  The good news is that I can help you feel better - somewhat, at least.  The bad news is that this isn't a pinched nerve.  With your bilateral presentation and the other symptoms you describe, it's autoimmune.  I don't know what it is, and there isn't going to be a cure, but maybe I can at least help with the migraines and some of the pain."

I'd just been hit with a sledgehammer.

I didn't even know what autoimmune disease was - I mean, not in any real sense.  I asked what that could entail; he shrugged and ticked off a number of possibilities:  multiple sclerosis; rheumatoid arthritis; Guillain-Barré Syndrome; lupus; scleroderma.  

So, of course, I did what anyone would do - I went home and hit Teh Google.


But my symptoms seemed suspiciously like those found in MS, RA, and lupus, particularly.  So began the tests:  the MRI (clear; no evidence of the protein build-up found with MS); the lumbar puncture (no contamination in or distortions of the CSF); the nerve conduction study (apparently normal nerve responses to having needles stuck in my arms and legs that were then shot with an electrical current); and the endless blood work-ups that continually came back with inconsistent results.  A few times, my ANA has been slightly elevated, which could be a marker for MS or GBS.  My rheumatoid factor test may come back elevated, which might indicate RA, but it's not over the line.  My sed rate and CRP levels are astronomical - but all that tells us is that something's wrong; it doesn't tell us what.  My doctor sends me to a neurologist who performs the tests, all the while with the attitude of patting me on the head as if to say, "Okay, you've had your tests.  Now be a good little girl and quit looking for attention."  My GP sends me for a second opinion; this one tells me outright that it might be "some deep-seated psychological problem," despite the fact that his own nurse has found an oddity in my Babinski reflex (something that can't be faked).

A warning: the following passage, a very small part of this diary, addresses a particular preservative, thimerosal.  It does not address anything relative to the autism debate, nor the issue of childhood vaccinations.  Please do not bring them up; they are off-topic, and I do not want a discussion of a real thimerosal-related issue to get lost in the ensuing flame war that will surely follow.  Also, if you flame me over this, we will know that you have failed to read the diary, because it has nothing to do with vaxxer/anti-vaxxer propaganda.  What are discussed here are purely issues of allergies, inflammatory response, and a specific failure on the part of the medical establishment.

By now, I'm so depressed over the response I'm getting that I'm ready to give up.  The chiropractor, though, won't let me.  He continues to research on his own, and at every visit asks me what I've learned in my own research.  He's got a few other patients with autoimmune diseases and symptoms similar to mine, but they've been able to get confirmed diagnoses.  One day, he begins asking me about potential allergens or environmental toxins. Of course, living and working in NYC is one big environmental toxin, but we're now looking for specifics.  I can't think of anything, until he mentions that his GBS patient had a problem with her flu shot.  I tell him that I got one just before the numbness began, but that I didn't have a reaction to it.  He asked whether I knew what was in it; I told him the doctor had mentioned that it was cultured in eggs, but I wasn't allergic to them.  He discarded the idea; I went home and fired up Google.  I found the name of the actual vaccine used that year, and eventually tracked down the ingredients.  The flue strain itself told me nothing, of course - but the inactive ingredients were another thing entirely.

The preservative was thimerosal.

But no one ever bothered to mention that.

And I'd known for literally decades that I was allergic to thimerosal.

How?  Contact lenses.  I had terrible problems with them for years.  It was like having sandpaper in my eyes; they were constantly red and inflamed, itching, burning.  Then a friend mentioned that she could only use specific lens solutions because she was allergic to thimerosal, the preservative in most brands (including mine).  I tried her brand, without it - the effect was instantaneous.  

A few times since then, I've accidentally used a solution that contained thimerosal.  The effects have been staggeringly bad.

And this was what was shot into my tissues, to incubate in the lymph system and spread throughout my cells.

But identifying a trigger does not equal getting a diagnosis.


There are still practitioners who believe that http:// (FMS) does not exist.  They say that we're hypochondriacs looking for attention.  I'd like them to try living in my body for one frickin' day.  They'd never make it.

There are conflicting theories as to what FMS is, and even more conflicting theories over what causes it.  Some aspects of it, however, have been firmly established.  I'll make distinctions between what we know and what's anecdotal or disputed.

First and foremost, FMS is an autoimmune disorder.  Some so-called experts still dispute that, but there's no scientific dispute, because it is, at bottom, a condition of runaway inflammation.  It therefore by definition becomes an autoimmune disorder.  

FMS is caused, fundamentally, by a disruption in the body's inflammatory responses, in which it rages out of control.  It's a chronic pain syndrome characterized by 1) a much earlier pain response to stimuli than should occur, and 2) needing a much longer period for the pain to subside than is normal.  That sounds rather benign - and for some folks, it is.  There are some people who have FMS secondary to a specific event, and who get over it after a short time, never to have it again.  I suspect that most are like me, for whom it's a chronic, life-altering condition.

it's easier to describe FMS by how manifests than by what it is.  The two fundamental characteristics are 1) chronic pain, and 2) chronic fatigue.  Either, neither, or both may be disabling in their severity.  The pain associated with FMS is most often muscle pain, although for some people, nerve pain occurs, too.  Joint pain is trickier:  If it's actually in the joint itself, it's not a result of FMS; if it's in the joint area, but actually located in the muscles and tissues surrounding the joint, then it's likely FMS.  Proximity makes the sufferer feel as though it's in the joint itself, even though it's not.

Theories as to causes abound.  What's known is that inflammation in the body causes the afflicted muscles to spasm - and then to refuse to release.  This is not the sort of spasm you feel with, say, a Charley horse; it's much more subtle.  A lot of it occurs during sleep - or during a traumatic event, such as a car accident.  You're not even aware of the spasming - but you sure as hell become aware of the effects, after a while.  The muscles are so tight that they cause fatigue and new pain; your body tightens up against the pain, and the spasming begins anew, so that you're adding layer upon layer of contracted musculature to your already overworked body.  It's also one reason for the chronic fatigue:  Most FMS patients suffer from sleep disorders, because they rarely reach delta wave sleep, much less REM.  The pain-spasm-pain-spasm cycle ensure that the body can't relax enough to get to REM, so no repairs occur, and the body gets no real rest.  It's why we sometimes need to sleep eighteen hours a day, but never feel rested.

Underlying causes are the subject of rabid debate.  Some attribute it to  a virus (Epstein-Barr usually figuring prominently in this analysis); some to bacterial infections or environmental toxins.  that, however, does not account for the people who develop it after severe physical trauma, such as a car accident or other injury.  Nor does it account for the role of abuse:  FMS sufferers include within their ranks disproportionate numbers of survivors of abuse (whether sexual, physical, or psychological), and PTSD is also relatively common.

My own theory is that it's a mix, and that the term "cause" is perhaps less accurate than the term "trigger."  In my own case, I have the history of viral and bacterial infections; I also have a history of abuse, including PTSD symptoms.  And a quarter of a century ago, I was in a car accident. Not a bad one, as these things go; I had just stopped at a stop light, and a guy driving a '73 GMC pick-up with a grill the size of Texas, speeding at more than 50 miles and hour, didn't see the light, didn't see me, and plowed into my back bumper at nearly full speed.  Knocked me well over a car length into the intersection (it was pure luck that the drivers to either side saw what was about to happen, or I'd have been sandwiched).  The impact was so severe that, even with a shoulder harness on, I hit the steering wheel.  The whiplash permanently damaged both my cervical and my lumbar vertebrae.  And it was while undergoing hospital evaluation later that I discovered fibromylagia trigger points (although back then, they didn't have a name).  I had every single one.

Now, the problems with FMS are legion.  It used to be called a trash-can diagnosis:  When nothing else fits, they give that DX as a last resort.  To some degree, it still is - I know of practitioners who will use it as a catch-all for any and all symptoms that they can't pin down any other way.  And, of course, there are those who simply insist that we're 1) being babies, refusing to handle normal pain like adults, or 2) it's all psychosomatic, and we're just looking for attention.  Unsurprisingly, in my experience, they tend to be "old-school" male practitioners.  

But it does exist, and it does encompass certain established symptoms and effects.


Of course, all arthritis is inflammatory.  But there is an actual condition called, informally, "inflammatory arthritis," that is autoimmune.  It, too, tends to be a bit of a trash-can diagnosis, as in my case:  My symptoms track those of rheumatoid arthritis, but my rheumatoid factor test does not fall outside of the high normal range.  But when it's not ordinary osteoarthritis, and it is autoimmune, what do you call it?  That's where "inflammatory arthritis" makes an appearance.

Osteoarthritis is something we can all expect to develop, to greater or lesser degrees, as we age.  Ordinary wear and tear on our joints will cause it, and its effects will be magnified by any injuries or trauma to specific joints.  It's usually unilateral in presentation:  One knee, one elbow, one hand will be affected, because the damage derives from specific trauma to the joint, not from a systemic attack.

Rheumatoid arthritis, on the other hand, is a disease of the connective tissues holding the joints together (and of the joints themselves, which tend to wind up implicated in the ensuing damage).  With RA, the body's autoimmune system malfunctions, misidentifies the connective tissues as an invading substance, and attacks, destroying the tissues themselves.  It's generally characterized by bilateral presentation (in other words, both hands, both knees, etc., rather than one side only), is accompanied by swelling, pain, and sometimes redness, and eventually can result in thickening and misshaping of the joints.  But it also carries other systemic symptoms, including chronic fatigue, chronic flu-like body aches, other effects reminiscent of those found in FMS, and even depression and cognitive issues such as problems with memory and concentration.


A host of ancillary issues are bound up in the bundle of pathologies known as "autoimmune disease."  A few secondary phenomena are Raynaud's phenomenon (vasculitis of the hands and feet), Sjogren's syndrome (dry eyes and mouth), irritable bowel syndrome (IBS) (exactly what it sounds like), and psoriasis, eczema, or other skin conditions.  In some cases, they can be severe enough to merit their own separate diagnosis as an autoimmune disease.  (And, yes, I deal with them all to varying degrees.)

There are other issues, too.  First and perhaps foremost is the viciously cyclical nature of these conditions, that make you feel damned if you, damned if you don't.  You're told to eat right, exercise, and lower your stress levels - but along comes something that triggers what's known as an "exacerbation" or a "flare" - and you know you're in trouble.  It makes it difficult to function on the most fundamental levels.  

So what happens?  Generally speaking, you're too exhausted and in too much pain to do more than the bare minimum to get by.  Does that include cooking healthy, well-balanced meals?  Not bloody likely.  It sure as hell doesn't include regular exercise; you may be in too much pain even to move.  And stress?  Pain is by definition stress.  And if you work for anyone but yourself, there's the added difficulty of losing time from work, or being late, or leaving early, or simply not being productive, and generally risking your position.  So you flare, becomes aggravated further, and it takes that much longer to claw your way out of it.  Then, once you do feel better, you feel compelled to do everything you possibly can as fast as possible - because you never know when the next flare's going to strike.  Generally, this means that you overdo it, and send yourself spiraling downward into a new exacerbation.

And let's talk about stress for a moment.  The two most frequent pieces of advice that autoimmune patients get are 1) exercise; and 2) reduce your stress level (and not necessarily in that order).  Why?  Because stress severely aggravates the autoimmune response.  

That first piece of advice is difficult; the second is laughable.  Every time a practitioner tells me to lower my stress levels, I want to smack him or her.  My very condition is fraught with stress.  And at the moment, our lives are especially stress-filled, and that won't be changing anytime soon.  I don't need to be told to lower my stress levels; I need something that help me do it.  And suggesting to patients without health insurance or large incomes that taking specialized yoga classes or making appointments for biofeedback procedures is not a way to help reduce their stress levels.

There's another problem with autoimmune diseases:  They're seen as "women's diseases."  It is true that women are diagnosed at a rate of more than three to one, compared to men, which may indicate either a hormonal component or some other gender-based variable.  However, it is incorrect to assume, as some practitioners do, that men cannot develop autoimmune disease:  They can and do, and probably at significantly underdiagnosed rates.

A related issue is the fact that many autoimmune diseases seem to be presumed to diseases of "white women" exclusively.  I'm not sure that the actual rates of occurrence are any higher in white women versus women of color - but the rates of diagnosis certainly are.  I've heard many explanations for this, but the one that strikes me as most likely is the inherent racial disparity in our health care system.  It's long been established that people of color are much less likely to get treated for - and much more likely to die of - a number of treatable diseases and conditions.  Part of it is poverty levels and lack of access to health care:  If you can't afford to go to the doctor for a check-up, you certainly aren't going to be able to afford the battery of tests required to rule out other diseases and conditions.  Part of it is institutional racism:  because practitioners see very few people of color who have obtained a diagnosis, there's a tendency to assume that it's a disease that afflicts the segment of the population that they do see - specifically, middle- and upper-class white women.  And it's also well established that there is an unfortunate tendency among certain members of the medical community to assume that poor persons of color have brought their health problems on themselves, via poor diet, lack of exercise, alcohol and substance abuse, etc.  But whether the cause is lack of access, institutional racism, or both, people of color disproportionately suffer (and die) in silence - and undiagnosed, their stories and symptoms and the facts we could learn from their cases go unreported and unanalyzed.

Finally, there's the problem of getting - or not getting a diagnosis.  My current diagnosis is a combination of CEBV Syndrome, fibromyalgia, and inflammatory arthritis.  That could change - and drastically.  As many as 25% of patients who will ultimately be found to have autoimmune disease may have the symptoms, but no positive lab results - for years, even decades.  It's not uncommon for a patient to develop a problem in her thirties, but not show any "positives" in blood labs, MRIs, spinal tap, or other tests until she's in her fifties or sixties.  By then, significant damage will have been done, and it's generally irreversible.  This is another byproduct of our health care insurance system:  When my uncle was diagnosed with MS years ago, it was based entirely on the doctor's evaluation of his collected symptoms (most of which I have).  Today, however, there are MRIs and ANAs and lumbar punctures, and if they don't come back with a "positive" result, then for diagnostic purposes, you don't have it (whatever "it" may be).  And if it turns out, twenty years down the road, that you do have it - and did all the time - well, too bad for you.  So, sometime over the next ten years or so, I may yet wind up with a diagnosis of multiple sclerosis, or lupus, or something else.  And whatever damage has been done will fall into the "too bad" category.


This is my life now.

It took me a long time to accept that.  I kept fighting the idea that my life needed to be different from what I envisioned.  But, hell, it was different - and it was completely out of my control.  Oh, sure, there are things I can do to help it, but there's no cure, and not likely to be on in my lifetime.

So this is my life:  Pain 24/7/365.  Actually, it's more than that:  There is not a second that I am not in pain.  Every second of every minute of every hour of every day, world without end, forever and ever, amen.  I've learned to sublimate a great deal of it.  The constant, low-grade, eternal pain has simply become a way of life.  I don't really even notice a lot of it - until it starts grinding me down, which happens a few times a day, as the pain meds wear off.  

But then there are the days when nothing works.  When every joint, every muscle, every nerve ending shrieks at me at 120 decibels.  When it creates fatigue so overwhelming that I'm too tired even to sleep.  When my brain ceases to function, and I can't think, can't form a coherent sentence, can't concentrate for more than 20 seconds on anything.  When my balance goes to hell and I find myself falling for no apparent reason.

Right now, neuropathy is burning my feet and hands.  My joints ache.  It's windy today, and wind aggravates my symptoms more than extreme temperatures and moisture combined.  

This is my "normal."  And no one can see it.

So I'm going to ask one thing of you.  Next time you're faced with someone who has one of these conditions - or some as-yet-unidentified condition - don't assume that it's nothing.  Don't assume that it's all in his or her head.  Don't assume that it's no big deal because it's not heart disease or cancer or because you don't see a cane or a wheelchair.  Don't even assume that it's manageable or that s/he is functional.

Because that person who was absent from work last week, who came in late yesterday, who left early the day before, who had to take time off to go to the doctor today, but who looks normal?  That person might be another me.  And believe me, I wouldn't wish this on my worst enemy.

Originally posted to Aji on Sun Oct 24, 2010 at 02:02 PM PDT.

Also republished by KosAbility.

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