TOUCHED BY LYME: The "all-in-your-head" write-off for Lyme disease
Guest blogger Jennifer Crystal explores something almost every Lyme patient comes up against at some point in their health journey.
Almost every Lyme patient I’ve ever met was confronted, at some point in their quest for diagnosis, with the “all-in-your-head” write-off. The first doctors and nurses I encountered when I got sick back in 1997 quickly moved to this condescending, all-encompassing “diagnosis” when routine lab work showed nothing awry. Instead of looking deeper, doing more specialized tests, or asking me more specific questions, these practitioners whispered, “Maybe you should see someone in counseling about these problems.”
Because these doctors and nurses couldn’t solve the problem themselves, they turned it back on me, insinuating ugly labels like “hypochondriac” and “hysterical.” I was told to learn to better manage anxiety and stress.
The problem with this type of write-off is two-fold: it invalidates the patient narrative of physical disease—which can, at times, mirror or accompany psychological illness; and it invalidates legitimate depression and anxiety as contrived conditions that do not deserve recognition or care from doctors treating physical ailments.
Depression is not a diagnosis of elimination. It is not something that doctors should land on as the solution when no other answer can be immediately found. Depression is a chemical imbalance in the brain, and proper medication can ameliorate, if not cure, symptoms for people legitimately suffering from it.
Tick-borne disease is also a legitimate illness. It is caused by the bite of an infected tick, not by a person’s presumed inability to handle stress or a propensity for moodiness. Tick-borne bacterial and parasitic infections cannot be treated with anti-depressants. Depression and anxiety are often effects of tick-borne illness, but they are not the cause.
That bears repeating. Depression and anxiety are often effects of tick-borne illness, but they are not the cause.
Anyone who is sick for a long period of time, sometimes with worsening symptoms and no end in sight, is bound to get depressed about the situation. He/she is bound to get anxious. Being sidelined from a happy, productive, active life to a debilitating existence isn’t just enough to make someone mad—it should make someone mad. People who accept this lifeless life as their fate should see someone in counseling. But never, ever should they be convinced that their situational depression and wit’s end anxiety is the root of their demise. It is merely an ugly, snarled off-shoot that, when guided appropriately, can actually fuel a patient’s will to get better.
Moreover, these patients should not be convinced they have a major depressive disorder, a true chemical imbalance, that is causing their Lyme symptoms. Some symptoms of Lyme and depression do overlap: a certain level of fatigue, moodiness, sleep disturbances. Other symptoms of Lyme have no correlation to depression. I never believed that my fevers, hives, burning extremities, joint pain and muscle spasms were a result of depression, whether that depression was categorized as chemical, situational or contrived. And as it turned out, I was right. As soon as I was properly diagnosed and treated for tick-borne diseases—as soon as I started to break free of the restraints of convalescence, I started to become my old, happy self again—not because chemical depression had been cured, but because the factors causing situational depression had slipped away.
Diagnosis of both depression and tick-borne illness can be tricky. Neither have perfect tests. But doctors do have the ability to ask questions that can differentiate physical and psychological illness; they have the clinical capacity to work with patients to find root causes of illness; and they have the training and expertise to recognize the difference between cause and effect. If this relationship is explored more carefully by both doctors and patients, people suffering from illness of any kind of can hope for easier and more accurate diagnoses, and doctors will become more accountable to validating all types of illnesses, the exterior or interior factors that may cause them, and the treatments that can help eradicate them.
Lyme survivor Jennifer Crystal is pursuing a Masters in Creative Writing at Emerson College, in Boston. Her website is jennifercrystal.com. Email her at jencrystal5678@gmail.com.
Thanks for this insightful post. It’s important that the medical community and the public recognize the relationships between physical and psychological symptoms and diseases. Denying another’s pain can only make it worse, and acknowledging the pain is the crucial first step to healing. Please keep up your good work as a messenger for the cause of healthy physician-patient relationships!
Jen,
Thanks for addressing this important part of having Lyme disease.
Mark
Outrageous ignorant, deliberate abusive harassment, humiliation, intimidation, manipulation psychological attacks are often as much or more devastating than the left untreated and/or left undertreated tick born infections devastating and horrific recurring crippling physical pain, suffering, exhaustion and damage. (Physical pain equals damage.)
Thank you for telling it like it is, in terms of how pretty much all of us get mistreated when we go for care for our many symptoms. And you’re right – the illness experience and the way we get treated makes for depression, but it’s a reactive depression and starts to clear up as we treat and start to feel better. Now that I know what’s going on, I have a verbal response ready for anyone who tries to tell me or another Lyme/co patient that it’s all in my/our/their head: “You’re right, it IS in our head! That’s an early place where the Lyme bacteria go and there they start to inflame our nerves and spinal cord and then our tissues can get inflamed anywhere. I suggest you learn more about this infection that DOES reside in the brain and causes so many brain symptoms, including depression.”
When chemical companies did not managed land properly, many people got sick and died a distance away from the pollutions that pass to the healthy from the land through the water. The courts decided that the chemical companies were negligent and they had to compensate people and their families who got sick. After reading the Boston Globe story, there seem to be a correlation of the rise of Lyme disease with closing of land areas that should have allowed the harvesting of deer. Is the increase in Lyme disease the result of prejudicial Conservation land management for the past fifty, plus, years? The victims of Lyme disease deserved to be made whole from non-scientific management of town own and non-profit own conservation land that is helping spread the Lyme disease by not allowing state governed activities that will allowed for the decrease on deer within their land boundaries. Where are the lawyers when a group of people need them?
Is there a cure for lyme?
Thanks knowing the doctor is wrong helps me move on
The issue with Drs. feeling like they have to blame you instead of admitting that they do not know what is wrong is pathetic. The Holier then Thou attitude is getting really out of hand. I have been to so many Drs. with Lyme symptoms that i can spot that attitude right off the bat and after a short conversation ( giving them at least a change) i just walk out. DO keep your mind open though because the person who suggested i be checked for Lyme happened to be an audiologist doing a hearing test on me. Thats what got the ball rolling because her sister had Lyme so she did some homework. She was right and i tested positive.
In short – in April a doctor removed tic embedded in my skin. Antibiotic prescribed. Yesterday went back, said symptoms worse, thought I had lyme although recent test negative. The inside of my skin feels like it’s on fire; have floating joint pain…., all started after tic bite. She said “Are you a doctor?” I said in frustration “No, but have you had lyme disease?” She said yes & was treated for a year and although she got better still has arthritic pain and that she just “lives with it” and part of the pain was her own fault. She then began to grill me about work – “Are you employed? Where? What age group do you work with? And what is your blood pressure; have you had other diseases (info that was in the chart). If I had been unemployed would she have withheld treatment? Doctor overall behaved unprofessionally – bad experience!!
Hearing this so many times for the past year, I grew to believe it, possibly an unsavory side effect of being doped up on drugs that didn’t do shit… but guess they were right, it is in my head. Its not 100% certain yet but everything points towards lyme… all that time wasted pisses me off.
Good post! Peace.