Variations of the Theme of Stress

I'm going to spend a little more time on the stress question today before we move on to support. I talked a little bit in the last blog about how stress may be not just a result of our illness (and the social insanities that surround it) but may actually be a contributing factor to our illnesses lasting longer.

I got curious about this and so I went looking to find some resources that could help me better understand the role of stress in illness.

One article I found talked about HIV positive patients and how stress can increase the likelihood (by a significant amount) that they will progress to full blown AIDS. I find this interesting, because in both cases (HIV and Lyme/Cos) there is a pathogenic cause of the actual illness, and they aren't simple. Could stress also play a role in the progression of our illness? Hmmm...

And here's another interesting one. Stress contributes to illness by causing the body to be less effective at quelling inflammation... a major source of our pain. So if we could find ways to reduce stress, would we be helping our bodies be in less pain?

Clearly lyme comes with a motherlode of stresses. One of the ways that we may have a good deal of say in our daily experiences is in how well we can manage our stress. We can't necessarily control how quickly the bugs die or how fast (or even how much) our body recovers from the damage that has been done. But maybe there are things we have more control over.

What if stress reduction could make a big difference in our daily experience of our illness? What if reducing stress also meant reducing inflammation and all the associated suffering that comes with it? What if minimizing stress could be a factor in our illness staying manageable and not progressing to be completely debilitating (or fatal)?

Here's a fairly solid list of suggestions of non-pill things to try, most of which seem very doable, even for us. (Though I will note that while planting a garden can be a lovely bit of stress relief, needing to weed it on demand come July might not be. Maybe get a garden partner before trying that one.)

Finally, the standard wisdom is that high stress puts you at a definite risk for illness. Here's a handy system for evaluating where you might be in the stress realm. Please note that they say that if you experience repeats of an incident (including illness) you should count it multiple times... and surely a chronic situation qualifies to get counted repeatedly.

So stress from a chronic illness might very well be a circular thing: the stress reinforces the illness, which contributes more stress, and so on.

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OK, so back to the survey.

I've been digging a little deeper, trying to find the correlations between different areas in our survey, and there's some fascinating little bits, some of which I don't really understand, but want to share anyway.

First off, answers varied a fair bit when I cross-tabbed them with what people considered to the their core protocols. I found myself wondering if people choose their cores for psychological reasons that might also affect their stress levels... or if one gets to the point of being really stressed out and then starts exploring "alternatives"... or does one of these factors in particular loom larger, and that helps determine protocol choices?

And I'm just not sure, but here's what I was looking at. I've highlighted the stress factors where there were the largest differences between answers form the different core treatment groups, and also did an average stress level for each core group.

So I'm left with a question. Why should THIS matter, and not all the other things I looked at in the last blog? I can speculate. Let's take folks for whm homeopathy is a core.

Maybe people who have leaned into homeopathics have done so in part because of money stresses.... because homeopathy is general less expensive than any of the others, it makes some sense that they'd end up going that route. And maybe they are isolated more because there aren't as many support groups around homeopathy: at least if you are doing antibiotics or rifing, you have a lot of companions to talk about with onine.

And maybe their families and friends believe them less because they are non-mainstream in other ways in their lives... the same ways that have gotten them to relying on homeopathics? (But you'd think the same thing would be true of rifers, and they seem to enjoy the highest level of family and friend's buying into lyme.)

And why would rifers be significantly more stressed about the politics? Is it because they have an extra layer to battle, this one within the lyme community itself? Rife machines are not nearly as broadly supported as the (hard won) use of long term antibiotics are among patients. Maybe politics in this case is double layered?

Or maybe people with more of an edgy political analysis are more likely to end up doing a more radical, non-mainstream treatment option, and it is just the general life philosophy that leads to both?

And are patients using homeopathy just more stressed in general because they have to deal with societal doubts on top of everything else? And if that's the case, why aren't rifers in a similar boat?

All of this is wild speculation on my part, but I must say this cross-tabbing of results is opening up a lot more questions for me about the social support and philosophies that different people have within the wider lyme community, as well as questions for me about how stress operates and intersects with all of this.

I'm left both fascinated and baffled.

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OK, one more piece, and then we'll let stress alone. Another thing I noticed is that women report a higher level of stress across the board than men do. See:

Now the sample size among women was much larger than among men, so I don't want to make a huge deal out of this, but I found that consistency to be curious. If we rely on stereotypes for a minute, it makes some sense that women have more stress about their personal relationships and perhaps get more anxious about what their family/friends think (and indeed those two were the areas with the biggest gap.)

But if stereotypes were to hold true, wouldn't the men be more stressed about not being able to work and money? But they aren't. I don't think we can just write this off based on stereotypes.

So... maybe you have some thoughts? Why do you think stress levels vary between these different groups? I'm curious about what my readers would have to say about these.

Stress and Spirochytes

Let's talk stress. It will come as no shock to anyone who frequents this blog for me to say that having an illness like Chronic Lyme Disease is incredibly stressful. (Of course one could argue that there isn't another disease quite like chronic lyme, and we'll get to some of that in a minute).

There is, of course, more than one relationship between stress and illness. The American Psychological Association has made a recent study* of how stress contributes to chronic illnesses... and found that a lot of people are in a fair amount of denial about just how much stress is affecting their own health.

Here's a quote from that article:

While 9 in 10 adults believe that stress can contribute to the development of major illnesses, such as heart disease, depression and obesity, a sizeable minority still think that stress has only a slight or no impact on their own physical health (31 percent) and mental health (36 percent). When considered alongside the finding that only 29 percent of adults believe they are doing an excellent or very good job at managing or reducing stress, APA warns that this disconnect is cause for concern.

What this raises for me, when combined with today's numbers from our survey, is how much the stress of our illness might in fact be a factor in delaying our recoveries, and if we are really taking the psychological aspects of our illnesses seriously enough.

It's fine to blame it all on "bugs in our brain" (and believe me, I do this myself on a regular basis) but what if the stress of the social, political, spiritual and financial aspects of the illness are playing their own independent role in keeping those bugs happy? If it is a factor, the bugs are being well fed, because we are one stressed out bunch of monkeys.

Here's the avergae rating of ten different stress factors among chronic lyme patients:

Here's the actual phrasing of the question and answers on this one, and how they translate into the ratings system:

What factors cause you stress related to your illness? (Please indicate how stressful.)

0 = not stressful
1 = a little stress
2 = some stress
3 = significant stress
4 = extremely stressful

What is most notable to me is that none of these answers come out with particularly low ratings. The lowest one on average (family and friends disbelieving your diagnosis) is still well over a 2. What other disease can you think of where the average stress level from that is this high?

Can you imagine coming home from the doctor's office and saying to your family, "Well, I have high blood pressure (or cancer, of liver disease, or whatever)." And them saying, "I don't believe you"? Doesn't it just seem bizarre?

Certainly there are people that this hasn't happened to (in our case, 59 of the 333 people who made a response to that particular question say this hasn't been a source for stress for them at all, so we can infer that for at least some of them, that's because it hasn't happened) but....

Wait a minute! That means that at least 274 of 333 people have had this happen to them? What?!? That's 82.3% of respondents. And that, my friends, is insane.

OK, I know that Fibromyalgia and Myalgic Encephalomyelitis (aka chronic fatigue) patients deal with this, too, and we aren't the only ones. But the difference I see between these two things is that fibro and ME are both still in the "we don't know what causes this" category, where lyme isn't. (Please note: I'm not excusing the behavior of people who give fibro and ME patients a hard time, I'm just saying that it should be easier with lyme because the scientists have articulated a cause.)

Lyme is clearly caused by a pathogen: a cute spirally little thing that makes you horribly ill. It's not a mystery illness, and for some portion of us, we actually have positive test results confirming the presence of our little spiral friends. 

But in fact, in terms of stress, having positive bloodwork hardly helps at all for this one. The average stress rating among all respondents on this item was 2.26, which is just barely higher than the 2.22 among those who have positive bloodwork. Apparently people feel free to disbelieve you even with tangible, medically-based proof.

I keep coming back to: what exactly is there to not believe in? What does it mean to "not believe in" an illness? As if this is a matter of faith and not science, or that one has a life philosophy that can't admit the truth of some very basic biology. Really? (And even with fibro and ME, I find myself wondering why it is so hard to believe in an illness that science simply hasn't caught up with yet. Just because your dogma doesn't get it yet doesn't mean it isn't real.)

OK, so I'm getting stressed just writing about it. Sheesh. Time to move on.



Not Being Able to Contribute

OK, so here's one of the things I love about this community. Our #1 stress factor (with a 3.32 rating) is that we can't work and otherwise contribute like we used to be able to. We were active, engaged people for the most part before we got this illness, and the loss of our active selves is the worst thing for us.

We might hate the politics (which earned a 2.82 stress rating) and have deep frustrations with the medical community and the lack of good care (2.75) and be up to our necks in bureaucratic hassles (2.52) but the thing that bums us out the most--even above the symptoms themselves--is our own lack of being able to contribute and be active.

OK, maybe my protestant work ethic roots are showing here, but I find this impressive.



The Fatigue of Fatigue (and other symptoms)

Another interesting piece is around treatment fatigue. I know people who have literally been whacking at this beast for decades (though the more common story is measured in years). With a stress rating of 2.90, this one is close to the top of the list.

Among respondents who have been treating for 1-2 years, treatment fatigue rates a 3.03, for those treating 2-5 years, it is 3.00, and for those treating 5-10 years, it is 3.09. In other words, this gets old fast (even folks in treatment for less than a year rated this one at 2.47) and it doesn't seem to get much better over time.

I do, however, find it curious that it doesn't get significantly worse. You'd think 5 years would be notably different than 1-2 years, and even more so after a decade.

Perhaps all this means is that if you are wired to feel impatient with something like this (and most of us are, even if we are generally patient people) one year is probably long enough to dump you into that state, even if some folks do manage to significantly dodge this bullet. Of course, it also might look different if I had surveyed the same group of people multiple times over a long period of time... which I hope to do at some point.

Here's how this question breaks down:

Even though the average totals are very similar in the 1-2 year, 2-5 year and 5-10 year subgroups, you can see the trend for increasing levels of stress over time... if you just look at the "some stress" plus "significant stress" plus "extremely stressful" categories.

I find it interesting, though, that at least 5.9% of people in each category report little to no stress about treatment fatigue. There is a resilience imbedded in this answer that I find myself very curious about... how does one NOT have major stress about this over time?

So I went poking around. How about meditators? Nope, they have an identical rating of 2.90 to the general survey population on this one. Yoga practitioners? Nope, they come in at 2.84. People who report that having a spiritual practice or belief is helpful? 2.91. Good family support? 2.91. Good social support? 2.92. Competent medical care? 2.91. (It's actually a little weird how consistent this is.)

OK, how about people optimistic about their recovery? Here's the only real difference I found, and even this may not be significant. They come in at 2.71.

Now, obviously, I've only honed in on one of the ten stress factors I surveyed about. I could run through a similar process with any of them and might find some other interesting patterns, and might find other things to comment on.

But the fact that optimism (which is an internally generated, state of mind kind of thing) seems to be a bigger factor than what someone does (like meditation yoga) or has (good family or social support) leads me to think it may simply be a matter of who someone is at a personality or basic programming level. I look forward to leaning into that question more in later studies.

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*As an interesting side note, that APA article contains a few paragraphs about caregivers of ill people and the incredible stress they are under. Might be a good thing for us all to be aware of, as our close companions also suffer, albeit indirectly from lyme.

In the Beginning...

Welcome back, everyone! Thanks for tolerating a nice long break for me. My own symptoms were flaring, my community was doing a 15th anniversary reunion, and I just needing some time off.

Over the next couple months, I'm looking forward to completing the first round of Lyme Voices survey blogging, and am brewing plans for future work. Thanks for hanging in there and being part of the adventure with me.

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Now, where were we...

...ah, yes. We've arrived at the part of the survey that deals with the early days of our infections. It seems that most of us had no idea what we were in for in those early days. Some of us don't even know when we got infected, since there were no dramatic early symptoms... no rash, or flu-like illness, or arthritis, the kinds of things we are told to expect.

Here's what the survey said. 58.5% of us don't remember getting bitten by a tick, and only 20.7% had a classic bullseye rash.

Of course, this is a survey of folks with chronic lyme. It seems far more likely that lyme will get caught and treated in the early days if there is a big fat bullseye to clue us in to what we are dealing with. While it is disturbing that almost 21% of us had a bullseye and still ended up with the chronic form, I'm thinking this isn't so much because bullseyes don't show up in 79% of all cases but that you are much more likely to end up with a chronic illness if you aren't "lucky" enough to get this no-brainer symptom.

For the 41.5% of us who remember a tick bite around the time we first got sick, it seems quite likely that that was how we got lyme. But what about the rest? I asked folks to speculate on how they think they got it (knowing that it is probably impossible to say for sure where you got it unless the tick is found and tested and your blood cultures the same strain that they found in the tick.)

And here's what survey respondents said:

I find it interesting that only about 3/4 of us feel sure we got this from a tick bite, as the story that "people get lyme from ticks. period" is still so prominent.

The lyme spirochyte has been found in all bodily fluids (lending credence to the idea that it is both sexually transmittable, and transmittable through breast milk) and apparently can be transmitted by various insects, not just ticks. There have also been babies born with lyme already in their systems.

And of course, lyme is in our blood. The Red Cross won't accept blood from people with lyme. Here's what their guidelines say:  

"Accept persons with Lyme disease if they were treated, the disease resolved and at least 1 year has passed. Those with CHRONIC Lyme disease are not eligible to donate blood." 

Whether or not we think it is wise to accept blood from people once treated that have been "resolved" for only a year, it is good to note that they take lyme seriously enough to include it in their proscribed conditions list. And it does raise the possibility that some of our mystery cases may have come from the nation's blood banks. (Now that opens a whole can of scary thought worms, doesn't it?)

In my mind, all of this provides plenty of reasons for doctors to not eliminate lyme from the possible diagnoses they consider simply because you don't live in an area where lyme is common.

Even granting for a moment that there is something sensible about the idea that lyme "isn't" in some places (when even the CDC charts show it clearly in every state in the continental US) I don't think you can really eliminate lyme as a possibility without taking into account if the person has:

• ever had a blood transfusion, 
• might have gotten it in the womb or from nursing
• ever lived in or visited a place where lyme is common
• ever had sex with someone who ever lived or visited a place where lyme is common

Only considering known cases from their immediate geographical area ignores a whole lot of other possible routes to infection. (Besides, you might recall from earlier blogs my thoughts about why else this thinking is wonky and circular.)

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So how did we end up having the chronic form of this disease? This next question may shed some light on it. The answer looks pretty clear form this: most of us simply weren't treated in the early stages. Only about 25% of us got some kind of treatment when our symptoms first emerged, and I'd be very surprised if many of us got more than a couple weeks of antibiotics at that time.

I find this second category to be particularly interesting. Almost 1/3 of us got sick very gradually. This thing just sneaks up on so many of us, and then we look back from the vantage point of having a diagnosis that makes sense, and you can see the patterns... but five (or ten or however many) years earlier, we probably would have said that nothing major was amiss.

I'm imagining (because this is the case for me) that some of us who got antibiotics right away then had a period of being relatively symptom free, and then the symptoms re-emerged very gradually. I spent about 5 years not realizing I was getting progressively more sick before I really tuned in to something major being "off".

And in my case, the time delay between the initial bite and infection (in 1997) plus the message that I might have "lingering symptoms that don't mean you have an ongoing infection" made it harder for me to connect the dots when symptoms started to come back out in 2005.

So a chunk of people who did have treatment initially could probably also have answered in one of those top two categories for our re-emerging illnesses.

The bottom line as I see it here is that if we are going to prevent chronic lyme, it isn't so much about tucking our socks into our pants when we go outside; it is more about the medical profession learning to pick up on subtler cues and recognize patterns over time, and perhaps the general public having their awareness raised to think about lyme when things start to feel off.

We need different medical training, and more awareness about those early signs. If this doesn't happen, then many, many more people are going to be condemned to the slow slide into chronic illness.