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."