Jim’s Story – Part 4: The Lyme Stigma

physicalI had my annual physical this week. We recently moved to a new area, so it was a new doctor, obviously unfamiliar with my medical history, so I came equipped with my story and my experience with Lyme Disease. For what it’s worth, I liked the doctor a lot and he’ll be “my guy” moving forward. That is, for everything other than for Lyme Disease.

This doctor, like so many other doctors and others with whom I’ve engaged over the past three years, doesn’t seem to “buy into” the concept of chronic Lyme Disease.

The physical began, as these things usually do, going over my vital statistics. As mentioned in a previous post because vigorous exercise is a great way to detox during Lyme treatment, I have been exercising like a maniac over the past year. Beyond detoxification, there have been other positive effects of the exercise. My weight is down considerably and, with it, my blood pressure and cholesterol (OK, there’s part of me that’s just bragging right now).

Unfortunately, the exercise has done nothing to cure my bald head (there, how’s that for corresponding humility?)

doc.jpgWhen the doctor asked what else we needed to talk about, I took about five minutes to talk about my Lyme diagnosis and where I am in my treatment. The doctor asked not a single follow-up question about it. Within a few minutes we were back to talk of LDL/HDL, diet and exercise, and college basketball.

Again, I’m taking nothing away from this doctor because in all other ways, he seemed completely awesome (I took some exception to his insistence that it was time for a colonoscopy, but I don’t consider him to be a sadist or anything).

The doctor’s seeming indifference or lack of curiosity about my Lyme came as no surprise.

lymedocMy previous general practitioner, whom I also consider to be awesome, often said this: “When I hear hoof steps out the window, my first thought is ‘horse,’ not ‘zebra.’” What he meant by that was that his first thought is to seek the answer that makes the most sense. That effectively was his rationale for he and his colleagues swinging and missing on my Lyme diagnosis for two full years.

That is why, when I arrived to that practice with acid reflux and neck pain, they recommended Prilosec and Advil. When I arrived with the terrifying symptoms of hypoglycemia, they suggested smaller, more frequent meals. When I came to them with brain fog and word-recall issues, they checked my records and chalked it up to a Vitamin B-12 deficiency. And when I came to them with excruciating pain in my feet and shoulder, they diagnosed it as gout, this despite the fact that my uric acid levels were normal.

When I put it all together and suggested that Lyme Disease might be the culprit, they ordered the standard test that never would come back positive for someone with “chronic Lyme.” So they shook their heads – “No, you don’t have Lyme Disease.”

westernAnd, finally, when I came back to them with the results from what is called a “Western Blot test” that showed I was positive for Lyme, they finally acquiesced. My Lyme diagnosis now met the criteria for Lyme established by the Center for Disease Control.

If convincing doctors is that tough, “believe me” when I tell you that explaining Lyme to friends and family is even more difficult, partially because it is difficult to describe, especially while under the effects of brain fog. It’s also difficult for others to imagine and understand how much havoc Lyme can wreak. Eyes start to glaze over if you begin listing problems ranging from brain fog to sore feet. Invoking the CDC during a family-dinner conversation will not generate understanding. The next sentence is more likely to be, “Pass the carrots,” than “Oh, the CDC, now I understand what you’ve been going through.”

And I think I understand. Before three members of my own family were afflicted, I knew precious little about Lyme. It seemed like the “go-to” malady of the week for the hypochondriac set. “Guess what old Aunt Myrtle’s says she’s got this time? Apparently, she’s got that Lyme thing!”

lyme spellingIf you have cancer, that’s readily understood. If you have a broken leg, hey, there’s the cast – how could you doubt it? If you have pneumonia – “oh, pneumonia!” – people can identify with THAT.

But Lyme Disease?What is that? That must be all in Jimmy’s head.” Putting aside the fact that Lyme actually WAS “in my head,” I can tell you that the stigma associated with “chronic Lyme” makes it something that I, at first, didn’t want to tell anyone. Once I did, the judgment I’d anticipated would accompany the diagnosis was palpable.

I found this passage from “Psychology Today” that provides a relevant perspective:

Being repeatedly told that we look and sound fine can lead us to think it’s our fault that we’re sick or in pain. We can be overcome with guilt, as if we’re failing those we care about, and we can feel embarrassed that we’re not living up to what we’ve convinced ourselves other people are expecting of us. The culture around us reinforces these feelings of guilt and embarrassment by sending the message that no one need be sick or in pain. We’re bombarded by news stories and advertisements telling us that we need only do this or do that in order to be healthy.”

Just have a positive attitude and it will all go away.

lyme2That’s how I felt when the symptoms I described were dismissed by doctors and by many others. Just last week, when I met with my “Lyme doctor” and I told her that I would be having the aforementioned physical the next week with my G.P., she suggested that I be purposely vague about my Lyme treatment. This was something I was unwilling to do, but seeing my new doctor’s indifference to what I was describing, well, it was both familiar and understandable.

And I want to emphasize that point a third time: I understand why people don’t understand. This isn’t to point fingers or seek sympathy. I’m speaking directly to the people with Lyme and who have the symptoms of undiagnosed Lyme. Many of your friends and family will NOT understand. Just this week, after reading my first blog post about Lyme, a family member emailed me and asked “Why did you keep this to yourself?” I presented two or three examples of when we had talked about it and (I think) the light blinked on.

It is that general lack of awareness and the corresponding stigma that contributes to the proliferation of Lyme Disease. There’s not one single, tell-tale symptom. Lyme will masquerade as one or many other things. And the general misunderstanding, the perception by many that it’s not “real,” and the associated label of hypochondriac or “perpetual victim” that accompanies it, well, that hurts. As you’re beginning your ascent out of what can be a deep hole, negative perceptions and doubt of those around you make you feel that much more isolated and hopeless during a time when you need support the most.

lymeBut that can’t stop you from seeking diagnosis and treatment. Because chronic Lyme will NOT go away without sustained treatment. Find the right doctor. Look for the right types of support groups. Find trusted resources that will lead you to the right diagnosis and the right treatment. It’s really tough. And, don’t expect that those around you are suddenly going to sprout the ability to listen, comprehend, or respond.

This is particularly true because, if your experience is like mine, you first told people you had several other things wrong with you. “I have arthritis.” “I have acid reflux.” “I have gout.” “I have meningitis.” “Oh … wait … I don’t have any of those things; I have Lyme.”

You’re the boy who cried wolf. You’re Chicken Little. You’re Darth Vader. OK, maybe you’re not Darth Vader … but C3PO, yeah that fits. C3PO was an incessant worrywart. So, you have to think about people looking at you like Han Solo looked at 3PO during the Empire Strikes Back. When 3PO was screaming about everything that was wrong on the Millennium Falcon, Han Solo’s response was to scream: “Shut him up or shut him down.”

So, maybe, my whole point is just this. Figure out who the R2D2 is in your life and talk to him.

 

 

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