If you're living with a chronic illness, you're in the right place.

Monday, July 11, 2016

No, I Don't Have Gluten Sensitivity

12:57 PM Posted by Tiffany Taft , ,
I have a lot of good people in my life.  Since my 20s, I've adopted a "low drama" friend strategy in that I don't have friendships with people who create unnecessary bullshit.  It's a good method, you should try it if you haven't already.

I also have a job where I'm constantly talking to people, listening to their stories, sharing parts of mine if it's appropriate (therapy relationships are strange things). What do I mean by appropriate?  When I'm meeting with a client, that hour is their time.  It's about them and what they're dealing with that day.  We're taught in graduate school to establish boundaries for many reasons I won't get into here, but boundaries are a good idea and therapists vary on how strict or loose they keep boundaries with clients.  Like a lot of things in my profession, this is a grey area.

I've heard some crazy stories of loose therapist boundaries.  Cray. Zee.

Speaking of loose boundaries.
I tend to land somewhere in the middle.  I have pictures of my kids in my office, for example.  I do disclose my illness to some of my clients, some I don't.  It depends on if them knowing I have Crohn's disease - or now, eosinophilic esophagitis on top of that, will help with their treatment somehow.  I know that sounds kind of strange, but it's a critical decision I make with each disclosure.  If I don't think it'll be useful, or even harmful, I don't bring it up.  I've seen many clients who never knew I was ill.

Then again, I'm blogging on the internet about my experiences.  So, there's that.

Disclosure is something every person living with an invisible illness deals with on a regular basis.  We know that trying to keep an illness hidden from everyone is actually more detrimental than telling just one person.  Keeping an illness hidden can be downright exhausting.  And the stress of being outed certainly doesn't help anything, and can lead to considerable anxiety and social isolation.

When you socialize with an illness that impacts what you can or cannot eat, it almost immediately puts you in a situation to disclose.  And deal with all the circumstances that go along with it.  I've been on this elimination diet the past 6 weeks or so and have had to explain to people that I can't eat several foods like soy or wheat.  For some reason that seems like an open invitation for many people to launch into a discussion on gluten sensitivity.

My immediate reaction is to cringe, which isn't fair.  Even though the jury is still out in the research world about what, exactly, gluten sensitivity is there are plenty of people who feel crappy after eating too much gluten.  Or FODMAPs, as the case may be panning out.  However, I do think that gluten has gotten a bad rap and is this black sheep of the food chain like eggs were in the 90s.  And I think there are more people claiming gluten sensitivity than the actual prevalence, so much so that a stigma about it has emerged.

Oh, you're one of those people.


Where those implies that my symptoms or condition isn't real rather some made up bullshit that I hide behind so I can be picky in restaurants.

I cringe because my esophagus is full of eosinophils, which shouldn't be there at all, and there's active inflammation - damage is being done.  The biopsies came back positive for EoE from my endoscopy last week.  I will say I probably have fewer symptoms than someone with gluten sensitivity has, to be honest. But I know as I eat, the food I put into my system is causing my system to attack itself and I don't know what food(s) are the culprit.  But I fall silent instead of trying to explain the details of EoE, nod in understanding of how difficult a gluten sensitivity must be, and change the subject.

I thought Crohn's disease was hard to explain, but it seems like someone usually knows someone with it.  Or I just haven't met enough new people to have to explain it again.  It sits on the back burner, I deal with it when it decides to flare up, then I put it back on the shelf.  EoE is in my face.  The people in my life don't mean to cause me to cringe.  As I said, they're alright.  But it just seems to come with this new territory I'm in.

I look forward to the days I can put EoE on the shelf, too.

--T2