Facing the World with Lyme Disease

North Coast river in woodsby Jentri Anders, PhD

Many Lyme symptoms described medically under such headings as neurological, psychological or psychiatric can be seen by others as negative aspects of one’s personality. Lyme produces physical and mental symptoms that hamper the patient’s ability to present herself appropriately to employers, spouses, friends and even the guy behind her in the ATM line. It distorts social perception and response, as well as non-social perception and response. Many Lyme patients will see themselves in the situation Polly Murray describes:

Lyme disease is horrible not only because of its symptoms, but also because of the effect the symptoms have on how the patient relates to the doctor. The Lyme disease patient may be so profoundly affected with a myriad of devastating symptoms–including some that affect personality, level of anxiety and ability to express and present oneself–that he or she may come across to the physician as fixated on a diagnosis or as having symptoms rooted in anxiety, or psychiatric problems, and be dismissed. Thus, one of the nightmares of Lyme disease is that it can make you sick in a way that makes some physicians not want to treat you as you need to be treated. Polly Murray, The Widening Circle, p.xii

“The effect the symptoms have on how the patient relates to the doctor” is only one side of problem. The other is the doctor’s reaction to the patient’s symptoms and how that reaction affects the patient. That side is made much worse by the narrow sociological pool from which doctors are drawn and the rigidity of their education.

Here’s how it works on the ground. I’m making the doctor male in this scenario because, until recently, most doctors were male and gender bias has always been an issue in my case. In the 30 years I have been infected, I have seen more doctors than I have the energy to count, as new symptoms appeared and old ones got worse. As long as the symptoms could be called physical, I could accept whatever the doctor said, even when they began to pile up for no apparent reason. When psychological/sociological explanations began to creep in, the doctors were treading on my professional turf as a psychologically-oriented social scientist and I was justifiably skeptical. Doctors have not been trained to deal with justifiably skeptical patients, especially female ones, so bad scenes ensued. Because of those, I greatly fear doctors. My Lyme-exaggerated fear response kicks in the moment the doctor enters the room, flooding me with adrenalin, raising my heart rate, putting me in panic mode. All my Lyme-caused thinking problems are then magnified. I can’t concentrate, can’t prioritize information in order to describe my complex problems. I use the wrong words or too many words, can’t remember when things happened, stammer, hesitate and get my tongue tangled. Hearing myself, I know I ‘m doomed, that I will leave the office a crushed person and I am helpless against the lump in my throat.

The doctor responds to me by becoming impatient, insistent, patronizing, defensive, sarcastic and/or authoritative, according to his personality. If I have arrived with a written symptom list, or a note explaining my communication difficulties and emotional lability, the doctor may well throw it back into my face, literally or figuratively. If I say, “let’s consider Lyme disease,” “patronizing” and “sarcastic” start immediately, along with blatant efforts to throw me off. One doctor asked smugly, “When was your negative test? 1981? Impossible, the test was not invented then.” I was too far gone to answer, “Well, gee, doc, my memory for numbers doesn’t seem to be working right. Maybe that’s a symptom?” First I’m frustrated, then panic-stricken, then despairing and finally, too distraught to benefit in any way from the doctor’s expertise.

Were the doctor as knowledgeable about the mental aspects of Lyme disease as I am, the picture I am presenting would be a diagnostic clue in itself. But, in all but a handful of cases, all but two of them female, the doctors could not see me clearly through their own prejudices, starting with sexism. It was bad enough when they saw me as a neurotic professional woman inflicting pain on herself because of her alleged guilt over being a bad wife and mother. But, when I had the temerity to diagnose myself and started acting like I knew more about that particular disease than they did (which I did) and THEN dissolving into sobs of despair, I really opened myself to a full blast of prejudice disguised as learned opinion.

The “doctor” end of the doctor/patient dynamic has been well-covered in the literature. I only went into it in such detail because it works as a model for so many other interactions a Lyme patient might have. The wider problem, the effect of Lyme symptoms on the way patients relate to everyone, is one that has not been so well discussed. I have been turning an observant eye on that dynamic for a while now, as both patient and professional.

Here is a short list of words that have appeared in print, describing the typical Lyme personality: perfectionist, overemotional, maudlin, super-critical, impatient, anxious, restless, agitated, easily frustrated, hypersensitive, angry, forgetful, confused, disoriented and clumsy.

Add physical symptoms and odd-appearing behaviors the patient came up with to compensate for them, and you do not have a picture of the person most likely to succeed–professionally or socially–in America. This person is not confident and “can-do.” This person may well be an alcoholic or drug abuser. This person is going to be disliked. If it has been going on for a while, this person is probably poor. Not only is this person going to have a hard time holding her own with the doctor, but she might have trouble just shopping. Not surprisingly, social withdrawal is high on the list of psychiatric Lyme symptoms. Generating a personality acceptable to normal people just requires more energy than a chronic Lyme patient may have and slight blips in the social flow may hurt too much when the B-flats* have destroyed one’s emotional resilience. One might conclude that it is better to avoid people altogether. (*B-flat=Bb, the abbreviation for both Borrelia burgdorferi and the musical key of B-flat. I call ’em B-flats to amuse myself, as a handy visualization technique and because it’s easier to say than Borrelia, spirochete or Lyme bacterium.)

I think that what Lyme patients experience socially, as a result of the impression they make on others, impedes diagnosis and self-diagnosis and exacerbates symptoms. It is a vicious circle worth trying to break. Here are some thoughts that are helping me break it.

1) The definition of mental illness. What is or is not accepted as normal behavior depends entirely on who’s doing the accepting. A diagnosis of mental disorder is greatly influenced by the gender, race, ethnic group, age, social class, politics, language and religion of both parties. That is not to say there is no such thing as mental illness, only that it happens in a social context that must be included in any truly objective diagnosis.This is the theme of Ken Kesey’s One Flew Over the Cuckoo’s Nest, the sociological version of which is Erving Goffman’s Asylums. Both describe a social dynamic familiar to chronic Lyme patients. Once someone describes you as having somatization disorder or hypochondria, every doctor you see is going to think “mental” before they think “physical” and God help you if your mental slate was not entirely clean when the tick bit you. Not only that, but the more you dispute the doctor, the more certain the doctor is that your problems are psychiatric, regardless of any credentials or expertise you may claim. If the doctor is inclined to attribute mental instability to particular groups of people and you’re in one of those groups, forget it.

A suggestion: First, reduce all mental assessments others make of you in direct proportion to your assessment of their objectivity. Depending on the results, you may wish to swallow your pride and take them up on it. Go see a mental practitioner, if you can afford it. All the ones I saw (all female) eliminated mental illness after hearing my story. They said no wonder I was depressed and supported my determination to find an LLMD (Lyme-literate doctor) before gobbling antidepressants. One said only one percent of patients referred for hypochondria actually have it. Another said, “Yes, I see the swelling in your knee and the bumps on your joints.” (Most of the medical doctors had ignored them.) Another was overjoyed when I handed her a copy of Brian Fallon, et al, The Neurological Manifestations of Lyme Borreliosis and said I’d saved her looking for it. My psychologist helped me plan for my visit to the LLMD I finally found. Maybe a mental practitioner can help you sort it all out–just don’t get committed!

2) The Lyme personality generates social stress. Social events can trigger Lyme symptoms and stress can make them worse. That relationship is now accepted in other diseases as well, including cancer. The longer a Lyme patient interacts with the world by presenting an image that others interpret as deviating too far from the norm, the more emotional stress that patient is going to experience. The “Lyme personality” is a stress-producer. The more emotional stress experienced, the worse the disease gets. It’s an insidious downward emotional spiral. As other Lymies have said, the B-flats make you want to cry or rage and then give you plenty to cry and rage about.

A suggestion: Acknowledge that there may be truth in what others say about you, figure out how much truth, then work on those things that can be controlled. Research it, there’s a lot you can do about irritability, fog and crying once you admit you have those problems. Meanwhile, I say it’s ok to reduce social contact to a minimum, to simplify your life and focus it entirely around healing.

3) Coming to believe it. The Lyme personality problem gets worse when, after a while, the patient makes her public image part of her self-image. No matter how strong and confident a Lyme patient may have been, constant negative criticism and life experiences suggesting incompetence will have their effect. If everyone, including a long list of doctors and maybe your “ex,” is telling you that you are a mental case and you have no proof of an alternative diagnosis, you might just start thinking, “Well, maybe I am a mental case.” Even with a diagnosis, there is still the problem that a Lyme patient without a cane, chair or walker to indicate physical illness can come off looking deceptively well, making odd behavior that much more off-putting.

One of the social effects of Lyme disease is that the B-flats make it hard for the brain to prioritize information, including social information. Looking back at two divorces and painful scenes between me and my children, I can pinpoint situations in which I know I did not do what was expected of me fast enough because my mind overloaded and jammed up. Social information came in faster than I could process it. Of course, that happens to people who don’t have Lyme disease. It’s typical of battered women, for instance. But I’ve never been a battered woman and these were isolated situations, ones so out of the ordinary I could not explain them to myself. They were situations I left in complete bewilderment, thinking, “My God, how did I do that? What on earth happened to me that I failed to deal with this adequately?” Remember, Lyme symptoms, including mental ones, can flare-up intermittently. You are like that off and on. For years, I had maintained a mental file labeled “I’m weird.” These domestic failures, as well as the professional ones, went into my growing “I’m weird” file and became part of my changing view of myself.

A suggestion: Yoga and meditation work for me. Sessions with a good psychologist also helped me, especially because the first psychologist I found after convincing MediCal to pay for one had a son who suffered from Lyme disease. The one after that had seen a number of other Lyme patients in the past. However, be warned. Seeing a psychologist who has no experience or knowledge of Lyme disease could cause one to go backwards emotionally. Learn what works for you. Mantras, prayer, music, self-hypnosis, needlepoint, whatever you can still do that silences the brutal critics in your mind. Fight the negative voices, your own and the others you filed in your “failure” file.

Remember what you’ve been fighting and, in cases like mine, how long you’ve been fighting it. Physical exercise helps, if that is an option. I never believed it about the endorphins generated by exercise alleviating depression, but then I found exercise I could do and discovered it is true. Now I exercise regularly, aqua-aerobics, and I do it as much to lift my spirits as I do to maintain flexibility in my arthritic joints. When I could still walk, if I caught myself berating myself or brooding over what might have been, I would fling myself out my door and try to walk. I had located myself across the street from a state park for that reason alone–to have a good place to walk in. Some days I could only make it to the mailbox. Other days I could walk four miles (with many, many rests). Moving my body around, if I can, however I can, helps me control what I call “mind-grind” and failure to do so often enough will quickly affect my emotions.

4) The role of body-image. Lyme not only damages the patient’s ability to present a normal appearance to the world by causing obvious physical changes, such as weight gain, loss of muscle tone, hair falling out, Bell’s palsy, swollen eyes, rashes and unattractive skin changes, but it also can cause the patient to come to mistrust her body. How can you turn a positive face to the world if you don’t know what your body is liable to do next? Chronic Lymies have so many strange injuries and sensations that, without a diagnosis, they might just come to the defeatist conclusion that they have been assigned odd bodies that are always going to be odd. Your bed vibrates under you in the middle of the night? You sit down on the ground while running because you feel an earthquake nobody else did? Give yourself a black eye on a doorjamb that wasn’t where you thought it was? Stumble and drop things when balance and grace have always been part of your image? Smell things no one else smelled? Twisted your right knee, then watched your left knee swell, too? Your partner’s sexual needs outrunning yours and you care? Must be your body betraying you again.

A suggestion: First, get a trustworthy diagnosis. Then, know your disease. Read, if you can, when you can, to learn the current thinking on what a Lyme symptom is and what isn’t. Forgive yourself for what the B-flats did–poor muscle tone and weight gain don’t necessarily bespeak a flaw in your character. Number 3, mind techniques and exercise, works for this too. Develop a holistic plan for healing and follow it. Don’t let anyone stand in your way. Prioritize your health closer to the top of the list. Mine is right there under what my children and grandchildren really need from me. If I had a spouse, his needs would be third, unless he were sick, too. It is crucial that you eliminate from your environment anyone who is reinforcing your own negativity about your body or who is contributing stress to your life, or that you eliminate as many of those as possible.

5) To be or not to be a victim. People who lived on the fringes of mainstream society before Lyme disease are going to find it harder to separate oppression-coping behavior from behavior caused by B-flats. It may be hard to tell if you are prone to spectacular crying, thoughts of suicide and volcanic rage because discrimination is frustrating or because bacteria are corroding the connections in your brain that would normally allow you to control those reactions. This one can be a trap because remaining sane in the face of discrimination requires some mighty strong psychological defenses and the defenses themselves may block your ability to admit to having a Lyme personality.

A suggestion: Analyze your history through the lens of both Lyme and your place in society. Be brutally honest with yourself. Resist the victims’ natural urge to categorize those who categorize them, because doing so allows you to reject observations that might be a valuable clue to what’s really wrong. Avoid chalking everything you did up to Lyme-distorted judgment, but don’t let Lyme-illiterates define who you are through their ignorance. Accept Lyme as an explanation for behavior where it applies. You can do this without drowning in the kind of psychobabble that denies the existence of victims. The danger is not in recognizing that you are a victim of whatever-ism and of Lyme disease. The danger is getting stuck there. It was only when I was able to filter out sexism, ageism, class snobbery (of doctors), ethnocentrism and the academic turf fight among doctors about Lyme disease, that I was able to read a description of the mental/psychological aspects of Lyme disease in the abstract and apply it to myself. Then, the late John Bleiweis, M.D. and Brian Fallon, M.D., et al, nailed me good and I’m grateful. It was the final piece in the puzzle.

6) The fortress. The mind is capable of both self-loathing and defenses against self-loathing. It will protect your idea of who you are vigorously with defense mechanisms like denial and rationalization. Nothing wrong with a little defending, under normal circumstances. Everyone does it to survive. But there’s a down side to psychological defenses. They have the potential to hide realities that need addressing. The better you are at them, the longer it will be before you can allow yourself to use mental data for diagnosis and the harder it will be to combat the mental effect of Lyme, once you know you have it. Chronic Lyme that stays bearable over time is much like substance abuse in that way. A formerly productive, competent, confident person needs to “hit bottom,” too, to see she is no longer as productive, competent and confident as she was, so that she can do something about it.

A suggestion: Learn how to use your defenses without being imprisoned by them. Develop new ones that don’t require any self-deception. Practice self-knowledge–do anything that will remind you who you were before the B-flats threw your self-image into question. I shamelessly put up pictures of myself in my former glory to help me remember what I’m aiming for in healing (adjusting for age, of course.) I also, one lonesome winter, went through my extensive photo files and threw out every picture of myself taken when I was at my sickest and every picture of anything to which I had an immediate negative gut reaction. It was very therapeutic. As I frisbeed them across the room (to be picked up later) I said to myself, I’m never going to think of this again. It didn’t work. I did think of them again, but it went a long way toward helping me remember who I was and who I hoped to be before Lyme disease came into the picture. (And if I ever wanted to retrieve any of them, I have all my negatives, but I haven’t wanted to retrieve any of them.)

7) Getting along by making do. Compensating for both physical and mental symptoms can have the same delaying effect as denial and rationalization. Depending on the severity of your case and what work you do, it is possible to come up with ways to work around Lyme symptoms–up to a point. Before I was forced to stop trying to work (I’m on Social Security), I had a whole repertoire of techniques, and still do. I make endless lists and hope I don’t forget I have them or misplace them. I schedule my day around my fatigue pattern and place items in my home according to how hard it is for me to reach them and how often I need them. I know every conceivable route to get where I’m going without getting stuck in traffic (urinary frequency, exhaust fumes, road rage). I’ve learned how to stop and relax when I lose my train of thought and let it choo-choo on back instead of trying to force it. If I plan for my afternoon in the morning, after my good-morning Lyme fog clears, I can face late-day pain and immobilization with much less frustration. I eat a lot of finger-food. I wear dark glasses even indoors against my light sensitivity.

I learned almost without realizing it to use my left hand instead of my right, because my right elbow was so painful. Eventually, that became a conscious compensation when I had to keep my right arm in a sling to avoid bumping it or absentmindedly straightening my elbow and causing myself pain. These are perfectly valid ways of coping with Lyme disease, once you know you have it, but if compensating accompanies denial, it can delay both diagnosis and treatment.

What is tragic is that if you don’t have a diagnosis, you could be acting like this for years and years without knowing some part of it is biologically-based. The Lyme-fog rolls in and the tears begin to flow at the same time that the attributes that once defined you fade. In my case, scholarship has always been one of the foundations of my self-image. Only looking at the numbers convinced me I had lost a big chunk of that. For example, at the age of 39, I took the graduate record exam to re-enter grad school and finish my doctorate in anthropology. I scored in the 99.5 percentile in verbal ability, in the 55 percentile in math and logic. Ten years later, I flunked an arithmetic test while applying for a job as a fourth-grade teacher’s aide. I failed long-division and fractions. (Why would a PhD be applying for a teacher’s aide job? Short answer–ageism, nobody was looking for a 45-year-old beginning professor.) Five years before I finally retired, while working as a reporter, I resisted attempts by my editor to make me use Spell-check. Who me? I’m the queen of spelling. Then he insisted. I did it and saw his point.

For the decade preceding my treatment, I had made word reversals in print and while lecturing that I just could not believe I had made: semen/sperm; computer/commuter; swastika/Star of David; conscious/cautious, austerity/asperity. When a reporter or lecturer makes a mistake like that, it is extremely public. These were humiliating experiences for me and I fought hard to retain my confidence. Eventually, I lost.

Over the long course of my infection, I have been greatly hampered by my skill at using compensations, denial and rationalization to protect the images I constructed of myself. These were first as a courageous activist fighting social pathologies from the social fringe; later, as a teacher/writer/reporter doing the same. I ascribed any atypical mental or emotional behavior I might exhibit to the fallout from my atypical social behavior. I scarcely noticed subtle clues like hyperacuity, against the background of creative social chaos. If I did notice, back when I first got Lyme disease, there was no lack of possible causes: living in a tool shed with no phone or electricity; hauling water; the stress of having just been sexually harassed out of grad school (I’m both a dropout and a kickout); divorce; childbirth; old-fashioned birth control pills; a history of emotional problems lingering from my dysfunctional childhood. How much was explanation and how much rationalization, no one will ever know, but I do know that seeing myself as a social pioneer and having an atypical life pattern handy to explain fatigue, insomnia and back pain, in the absence of any good explanation from my doctors, kept me from “hitting bottom” psychologically for a very long time.

By the time my life moved away from children and community toward career, I was very well defended, including a steel wall of denial that anything could be wrong with my mind. So strong was my view of myself as a high achieving example of the work-ethic (that’s not as paradoxical as you might think), that hitting bottom for me came even after hospitalization for Lyme hepatitis, getting fired for my negative attitude and living off and on in my car. It was only when I woke up one morning and could not walk for two days that I was finally forced to face the idea that I was too sick to work. Only then was I motivated to question the one negative blood test I had gotten 10 years before. Only then did I research Lyme disease as thoroughly as I had researched California’s water plan and realized how sick I was and that I needed not just a doctor but a Lyme-literate doctor.

It is a very sobering experience to look at the last 37 years of my life and wonder how much of it I chose freely, how much was determined by sociological factors and how much was influenced by chronic and/or intermittent symptoms of Lyme disease. Some of these questions are silly, like, did I get into short men because it hurt my arthritic neck to look up at tall ones? Some are serious, but moot. Was the nightmare I had that helped me leave my fourth husband a meaningful Jungian production of my subconscious mind or was it just a random bunch of images generated by the B-flats in my brain? Or did the B-flats cause the nightmare, but Jungian images still sent me a valid message from my subconscious?

Others are highly relevant to the issue of stress. Did I move away from the community I helped found because it had disappointed me and I needed a better job? Or was it because I could no longer sustain my image of myself as a leader while dealing with Lyme symptoms? When I was ready to face myself, armed with a solid Lyme diagnosis, I had to admit that one of the reasons I moved was that I was embarrassed by events I can now see as the workings of the B-flats in my brain–wakes and funerals I attended sobbing in a way entirely out of proportion to my relationship to the deceased; sobbing uncontrollably in public for no apparent reason at all; looking and acting like I had been drinking heavily after only one beer (the B-flats lower one’s alcohol tolerance). Bleiweiss got me good when he wrote that Lyme patients are prone to “fatal attractions.” I never stalked anybody, but I sure made a fool of myself by my own standards and that’s a hard thing to admit. It’s as hard as admitting to your adult daughter that what she said you said might really be what you said because the B-flats made you say it.

A suggestion: Without compromising your integrity, wallowing in regret or kowtowing to your doctor, try to view honorable humility as a healing technique. One of the founders of anthropology said, “It’s all data. You just have to figure out what to do with it.” Listen to what others say about you and look for clues in it, even if you have excellent reasons to distrust their observations.

If the techniques of “hard” science can be usefully combined with the kind of holistic healing humans have used for millennia, and there are studies supporting that hypothesis,(cf. Andrew Weil, M.D.) then Lyme disease is one illness that can really benefit from that combination. I spent decades living in a subculture where the connection between mind, spirit, environment and physical health is a fundamental belief.

Unhappily for some of us, it so happens that that subculture planted itself in tick country. As a scientist, I have to wonder why I know so many people with Lyme disease who, like me, held it off for so long. Why did we not get sicker sooner? My doctor thinks we have a weaker strain of B-flat in northern California than exists “back East.” I think it could also be that those of us who are here because we “dropped out” cultivated psychological and spiritual practices that helped us fight the B-flats in our bodies, there because so many of us did not get diagnosed or were treated with insufficient antibiotics. I am going to go ahead and believe that, in the absence of proof to the contrary, because it is better than believing that there is no hope for me now that I’m incurable and have no access to a Lyme-literate doctor. Plus, it seems to be working. I’ve been off antibiotics, after 2.5 years of them, for six years now and, although some things are getting worse, many things are much better and I have not relapsed. It’s too late for me to hope to eradicate the critters completely, but it’s not too late for me to become the kind of person best able to fight them with both antibiotics and my spirit.

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