Let's talk about anxiety

[LinksEtc]

Here are some starter questions ...

Do you experience FA anxiety?  How do you manage it?  How has the anxiety affected your day-to-day life and/or your relationships with others?   Have you been treated in a caring and respectful way?

Do your kids experience a lot of anxiety?

Do you think food allergy support groups help the anxiety?  Do they make it worse?  Is it a little more complicated?

How about FA articles/studies on anxiety?  What do you think about those articles/studies?

Can allergists diagnose anxiety?  Can mental health professionals truly understand the FA life and how some behavior (that may first appear to be over-the-top) might have a rational basis? 

Have you ever been unfairly accused of being anxious?

Is some anxiety healthy for those with FA?

Do docs take our concerns seriously?

Are we sometimes being unreasonable?

Etc.

[LinksEtc]

I'll add a few of Boo's links here that I feel are relevant.

"Tigers In Our Midst: Groupthink, Anxiety and Allergy Communities"
http://foodallergybitch.blogspot.com/2012/01/groupthink-anxiety-and-allergy.html

"The Stress Lasagna"
http://foodallergybitch.blogspot.com/2012/04/stress-lasagna.html

"Are Food-Allergy Parents At War With Their Doctors?"
http://foodallergybitch.blogspot.com/2013/03/are-food-allergy-parents-at-war-with.html

"When Food-Allergy Mortality Smacks You Upside the Head"
http://foodallergybitch.blogspot.com/2013/07/when-food-allergy-mortality-smacks-you.html

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Here are a few KFA links.

"Anxious About Food Allergies? You Are Not Alone"
http://www.kidswithfoodallergies.org/resourcespre.php?id=49&title=anxiety_about_food_allergies

"Anxiety in Children with Food Allergies"
http://www.kidswithfoodallergies.org/resourcespre.php?id=111&title=anxiety_in_food_allergic_children

"How to Keep Your Food-Allergic Child From Feeling Left Out"
http://www.kidswithfoodallergies.org/resourcespre.php?id=169&title=food_allergies_grief_anxiety_and_depression

[twinturbo]

I'd have to reveal my bias. The other FA parent in our household is a researcher in human behavior minimally using SEM to explore causative analysis on top of correlation rather than simpler linear regression that is only capable of simpler correlation. We also actively engage in reading such research for sample and confirmation bias as well as have high expectations for external validity on conclusions.

I also know how limited these sort of research endeavors are on human subjects so they are often limited to self-reports and observation for the most part, sometimes second hand observation through reports. Chapter and verse on IRB.

The published papers tend to be rife with biases, using comparatively primitive math than SEM with little to no external validity sourced from observation and self-report. I'm sure they make great toilet paper.

Meanwhile at the immunological research and journal publication ranch... we have put one editor of a major journal on track with a source to introduce more complex mathematical modeling in immunological research. I'm not sure it would solve the mystery of allergic disease but there would doubtless be a net positive to test causality in mechanisms.

Because there is some interest in causality (vs. correlation), we talked briefly about the use of Structural Equation Modeling (SEM) in the analysis in immunology.  SEM is an extension of general linear regression but has several advantages.  It provides a mechanism to test causality, provides simultaneous estimation of terms as to not inflate alpha, to test path models which could be used to model many of the mechanisms, takes into account error in measurement, and most importantly provides a mechanism for exploring endogenous and exogenous "latent" variables.

I can correlate anything. I could correlate anxiety to the researchers who publish papers on anxiety. I've said my piece on the matter. Less money dedicated to crap in order to dedicate to improved research on allergic disease.

[CMdeux]

GREAT thread.     

Here are some starter questions ...

Do you experience FA anxiety?  How do you manage it?  How has the anxiety affected your day-to-day life and/or your relationships with others?   Have you been treated in a caring and respectful way?

I'll have to come back to this one at some point.   Early in the journey (we've been doing this for 14y at this point), it was VERY stressful-- partly that was about multiple food allergens and severe reaction history in a toddler, and partly it was about not yet being thick-skinned enough to just get OUT of situations when our judgment told us they were unsafe.  Family and friends were not supportive, by and large-- and they often thought that they WERE trying to be so, which increased friction and our desire to not seem "unreasonable" given their apparent effort, in spite of how inadequate it was in the face of what was necessary.  KWIM?  Anxiety has had a corrosive effect on my relationship with my DH, because once we were forced to divide-and-conquer by having a full-time SAHP, our observations and perspectives shifted.  We no longer shared a common frame of reference, if you will.  I faced daily situations that stressed me out, and he didn't.  Ergo, he didn't SEE certain things as inherently dangerous in the same way that I did because he lacked my context.  (Visiting the local playground/park, for example-- he couldn't understand why it gave me palpitations, and I could NOT convince him that I was not being irrational.)

Do you think food allergy support groups help the anxiety?  Do they make it worse?  Is it a little more complicated?

More complicated, I think.  It just so much depends on whether the 'median/normative' experience with a support group matches YOUR needs-- if it doesn't, it tends to increase anxiety.  FAAN did that for us initially.  It wasn't until I found this community that I had what I needed-- a group whose average experiences were closer to what we seemed to be experiencing day to day.  I felt like an alien when I read the cheery "don't worry, just bring your own cupcakes" advice from some other support organizations.

How about FA articles/studies on anxiety?  What do you think about those articles/studies?

They seem mostly like common sense to me.  Well, some of them do-- the ones that actually look at a cross-section of REAL patients/families rather than cherry-picking a sample that practices more minimal management (probably because of a higher threshold dose).  The speculative ones sometimes REALLY tick me off-- because they all seem to have a whiff of "mostly, these are women "(and why is it "mothers" in these, huh??) " who should be monitored carefully for the development of MBP, and by the way, we need to limit the amount of damage that they are doing to their kids..."

  Yeah-- teaching them to ask questions and be alert around obvious sources of an allergen is "abusive" apparently, in some of those articles.

Can allergists diagnose anxiety?  Can mental health professionals truly understand the FA life and how some behavior (that may first appear to be over-the-top) might have a rational basis? 

Unfortunately, while both groups SHOULD have insights, they often don't have a full enough picture to really distinguish for an individual just when anxiety crosses from 'rational' to 'irrational' but it doesn't stop them from making pronouncements about it.  The best allergists seem to live with it themselves-- otherwise, they can't really fully grasp what it is to live with FA day after day.  Harsh, but true.  Similarly, mental health professionals too frequently seem to think that "food allergy" that can result in death is a "rare" thing that can't possibly apply to YOU... in which case, you need help with your "irrational" beliefs. 

Have you ever been unfairly accused of being anxious?

Absolutely.  Most hurtfully by my spouse and closest friends, by my mother, even.  I have been vindicated many times over in the years since, but yes-- this was lonely and horrible beyond my words to explain it.  I do think that this experience has left me with PTSD, every bit as much as any of the horrific life-threatening reactions that I have witnessed.

Is some anxiety healthy for those with FA?

I think so-- clearly avoidance IS based on "fear" or "anxiety" at its most basic level.  There is a point, though, when even clearly RATIONAL anxiety becomes maladaptive, and is unhealthy.  Unfortunately, this is the unenviable position that a lot of parents/people with MFA and very low threshold doses find themselves-- we could really use help from a mental health professional, but "help" needs to acknowledge that the fear IS completely rational.  Too often, that point is not acknowledged, and honestly-- it can only go one of two ways from there:  1.  patient erroneously believes that fear IS irrational and takes risks that place them in danger of fatality without correctly assessing the risk, only the benefit, or 2.  the patient doesn't trust or respect the therapist.

Do docs take our concerns seriously?

The good ones do.  I have used this as a litmus test for physicians, frankly-- following my DD9's lead there, I realized that any physician that treats her dismissively is someone that she probably can't view as a "partner" in her care anymore.

Are we sometimes being unreasonable?

Etc.

NO doubt.  When we based our demands on others on what "might" pose a risk, rather than what DOES pose one (based on data and past experience), then we probably should second-guess ourselves, and try harder to push out into the zone that makes us a bit uncomfortable rather than living an attenuated version of "full life" on the basis of unknowns.  I'm a big fan of challenges to establish sensitivity where there are questions about this.  It's hard to do that, yes-- but necessary, IMO.  You're never going to be wishy-washy about something that you KNOW is a risk, and you'll let go of stuff that you think is manageable under those conditions.

Not knowing leads to a lifetime of fighting the bogeyman-- and can escalate into irrational anxiety.  Well, the rational sort is hard enough with food allergies, so no need to ADD to it.    I also think that doctors ought to be a LOT more assertive in telling people when they simply have no evidence of actual food allergy.  "Yes, your skin test indicates sensitization to tangerines, but you can eat them without any ill effects, since you have done that in the office with us.  You are NOT allergic to this food."

[CMdeux]

More about that last point-- even failed food challenges can be quite helpful in terms of managing anxiety and placing bounds upon it.  The reason is that once you've SEEN "what will happen" then it (usually) becomes less terrifying than imagining 'the worst' when you aren't even sure-- emotionally, I mean-- what "worst" would look/feel like.

An example:  I am terrified of air travel on the basis of DD's sensitivity to pn/tn.  My knee-jerk reaction to "I'd like to go on this overseas trip," was AYFKM?? NO.

But then... I thought about it.  Were there ways to reduce risk?  Yes.  Could I reduce it to 'acceptable' in light of the benefit?  Maybe... it took a long time, and a rock-solid partnership with a really great allergist who KNOWS that we aren't reactionary or irrational... but we eventually settled on a series of barriers, doing the best that we could to choose nut-free airlines, and traveling with LARGE amounts of medication in event of emergency... premedicating with everything that we could possibly throw at her immune system to tamp it down tightly ahead of flights.... avoiding other risks in the weeks ahead of travel (to avoid filling the allergy cup at all) and being freakish about avoiding illness ahead of flights. 


I recalled all that Peg did to set her son up to travel to (and from) the UK for his college exchange, because her DS has similar sensitivity to that of my own DD. 


Now we know.  It's possible to do a trans-continental flight with someone as sensitive as my DD.  It's also mostly not worth it-- 12 hours of near-hyperventilation from sheer terror is more than either one of us is eager to repeat.  Ever.  This is an example of pushing "possible" into the red zone, IMO.  It was worth it-- once.  She loved Europe and would eagerly go back-- if not for the flights.

Sort of like attending a baseball game with only a peanut-free "section" that requires you to assume that there will be nuts everywhere ELSE in the park that night.  As a regular risk, probably not a good idea, because eventually you're going to get unlucky in a big way.  At least that is how we looked at it. 

[LinksEtc]

TT,  can you translate that complicated post using some simple terms  ?  Otherwise, I'm going to be forced to consult Google  .

CM, I just love reading your thoughts on things ... always so interesting, insightful, & helpful.

[twinturbo]

I shine when it comes to making the obscure vulgar.

The papers are weak sauce No , Sherlock. I congratulate them on continued academically pointless character assassination--well-played. Where's the research on mechanisms? Causality? Oh, right.

Essentially, all the researchers have right under their nose throughout this entire foray into allergic disease the potential to examine causality in mechanisms through more advanced mathematical models. Psych uses it all the time, many areas of research do. But immunology has not. Yet the garbage correlation on mom's anxiety keep rolling in under the umbrella of immunology. At some point you have to question the priorities on research which I can tell you is costly in terms of time and money.

It's also highly flawed when you start off with sample bias (let's use moms. Not dads, parents. Just moms), then compound it with confirmation bias (moms are anxiety ridden we're just setting this up to see how anxiety ridden), then excrete a conclusion far, far too close to a tautology where your conclusion is your opening statement repeated.

I can fight these in a 504 scenario with hard counters. I can show the school empirically that no one is free of either anxiety or free of emotion in decision making, males and females alike. Can most parents do this without specialized knowledge on the fly during 504 process or at a doctor's office? A little unfair to the unsuspecting.

I don't know if I made any more sense but I'd be happy to later post definitions of bias types, external validity. I'll spoiler them to conserve space no point in everyone scrolling half a mile.

[CMdeux]

Yeah-- honestly, LIFE-THREATENING food allergy... let's see...

are you--

1. somewhat anxious about this?

2. so stupid that the words "life" and "threatening" don't mean anything to you?

That's the problem with research like this.  I mean, sure-- HOW anxious is a reasonable question, but it's not all that useful to anyone to know what the AVERAGE looks like there, nor to focus on ways to "reduce" anxiety.  At least not until you determine whether or not this is a set of somewhat realistic/reasonable concerns for the population involved.  Most of these studies never attempt that, even in surveys where it would be relatively easy to do so by asking questions about reaction history and frequency in addition to QOL questions focused on anxiety.  Sorry, but someone who has one positive skin test at 3yo to one (unusual) tree nut does NOT live in the same universe that someone who has aerosol/contact reactivity and multiple ER trips for wheat lives in.  If they are both equally anxious, then one of them probably needs some help-- but these studies do very little to tease apart WHICH ONE does.

Yes.  Confirmation bias run amok. 

It's one thing to define a patient population and then STUDY that patient population, but if you look at all people who... say... have seen an orthodontist... well, that is a fairly diverse group.  SOME of that group no doubt experiences far more "negative feelings" about the process, but that means nothing, in all likelihood-- it probably doesn't even amount to useful predictive interventions for clinicians.  Same thing here.

There are multivariate methods of treating more nuanced data collection, and GOOD GOLLY, it is high time someone thought to utilize them.

Better still, my anxiety would be a LOT lower if one of two things happened:

a) my daughter had better legal protections that were more widely recognized, and
b) someone with her severity and MFA had a chance at desensitization that wasn't really dangerous.

I'd MUCH rather that $$ went to those things.  I know that I'm anxious.  I also know WHY I'm anxious.

[twinturbo]

Or merely asking the research to be productive and of benefit to the human subjects studied. *Help* psych and med contextualize the anxiety with external validity (real world circumstances not under control) so that there is a body of work that serves as a bridge of communication between the two that is not dismissive but mindful of the patient's history and true risk-benefit.

Maybe the more productive correlation is to anxiety of survivors in war torn areas riddled with undisclosed land mines. It matters how they frame the investigation, design the study and measure with questionable accuracy to conclusions that are contestable and quite possibly inapplicable to the subjects.

Wait, why am I rambling? 

[LinksEtc]

 

[CMdeux]

Clearly this stuff touches raw nerves.  Maybe it's just me.   

[twinturbo]

On this my husband and I are of like mind, he maybe more as a scientist involved in journals and peer review less tolerant about "lazy" science (his words). It's through him as the FA dad that I've been forced to keep up with him on matters in the world of academia and research. The difference is I post here he doesn't. Same for my FIL who is a long time hard science researcher, however DH does experiment with emotions in human subjects so it gets kind of compounded?

Me, I just want them all to get past my uterus and get on with the autoimmune mechanisms, but better and harder than before explicitly with greater attention to causality. It's harder, it takes more time but I feel when you look at the sunk costs of data analysis it's worthwhile to push the boundary. But what can I do, you know? We're already working right at journal editors directly. I have no other recourse but for volleys such as that where and when we can.

[SilverLining]

Do you experience FA anxiety? 

not as much as I. Used to.

How do you manage it? 

I try to eliminate things that would cause anxiety.  I try to control my own food.

How has the anxiety affected your day-to-day life and/or your relationships with others? 

my allergies affect them.  I don't think my anxiety directly affects them.

Have you been treated in a caring and respectful way?

treated by who?  I don't understand.

Do you think food allergy support groups help the anxiety?  Do they make it worse?  Is it a little more complicated?

I don't think I could ever attend a support group for anything.  I did get help from on-line support groups (like FAS).

How about FA articles/studies on anxiety?  What do you think about those articles/studies?

off hand can't think of any I've read.  I think I've read a few, but just don't remember them.  Probably they related to parental anxiety, so didn't relate

Can allergists diagnose anxiety?  Can mental health professionals truly understand the FA life and how some behavior (that may first appear to be over-the-top) might have a rational basis? 

Pfft!  The allergist I was seeing said "those peanut parents" were all over-reacting when they talked about cross contamination.  Obviously he was no help.  I never saw a mental health professional.  I was able to get myself to a place I 'm comfortable with.

Have you ever been unfairly accused of being anxious?

My answer to that would probably change based on my mood.

Is some anxiety healthy for those with FA?

absolutely

Do docs take our concerns seriously?

my allergist did not.

Are we sometimes being unreasonable?

No idea what that question means.

[LinksEtc]

Clearly this stuff touches raw nerves.  Maybe it's just me.   

No, no - it's not just you.

Raw nerves for me, extremely.

[LinksEtc]

How has the anxiety affected your day-to-day life and/or your relationships with others? 

my allergies affect them.  I don't think my anxiety directly affects them.

Have you been treated in a caring and respectful way?

treated by who?  I don't understand.

This is all general - not directed at you personally SL ...

It could be anybody you have a relationship with (family, friend, doctor, school, etc.).  Did they try to give you support?  Did they ridicule you?  Did they get angry?  Did they try to be patient and kind, taking extra time to understand your concerns (and then did they try to address those concerns)?  Did they gently suggest that maybe you could benefit from some counseling? Give you a hug and take you to dinner?

Have you ever been unfairly accused of being anxious?

My answer to that would probably change based on my mood.

Are we sometimes being unreasonable?

No idea what that question means.

I guess people could read into this ? in different ways.  For example, unreasonable in
accommodations we ask for.  Unreasonable in the sense that maybe our anxiety has crossed over
from being rational and balanced to unhealthy.  Unreasonable in what precautions we take to avoid allergens. Etc.