I went to a scientific conference recently and was struck by how they seem—bizarrely—to be designed to be exactly the opposite of what would work for me. This isn’t a new experience, but this is the first conference I’ve attended since I learned that I’m autistic+ADHDer and have hEDS; knowing those things make it much clearer why I don’t like going to conferences!

I’ve been to about a dozen conferences in 3 different scientific fields over my somewhat unusual career. I actually love giving talks, so that’s never been the problem. It’s literally everything else about the conference that I don’t like!

I’d always assumed the point of a conference was to share your latest research, and catch up on what everyone else in the field was up to … since this is literally the structure of these events. We submit abstracts with our results, and then we show up and get a giant schedule of when everyone else is showing their results. Being a literal type, I assumed I was supposed to attend as many of those sessions as possible, especially since it’s typically expensive to attend a conference (airfare + hotel + big registration fees). If I wasn’t supposed to be attending them, then why was there a schedule full of this stuff?

It’s only in recent years that someone explained to me the “purpose” of conferences is really more about networking, meeting new scientists and potential collaborators, and catching up with colleagues, friends, and acquaintances.

A word about me

My hEDS means I get injured easily, and many normal activities are intensely fatiguing. So the standing around and the sitting in conference chairs is very costly to my body.

My autistic operating system is information/task/object oriented, not people oriented. Interacting with people is an expensive cognitive load and will detract from my ability to focus and learn. It’s also just exhausting to me (both in the way it is for all introverts but also in a specifically autistic way). My OS also needs structure and routine, so traveling and generally not having my normal routine is also stressful and adds to my cognitive load (and also aggravates my body and health conditions).

My ADHD operating system makes it harder for me to maintain attention, particularly when listening. My auditory processing disorder (really, and aspect of an autistic brain with sensory processing differences) definitely contributes to this.

What, exactly, doesn’t work?

I’m here to learn about the latest research …. but

I’m listening to a talk session …

• but my brain gets “full” after about an hour, and no amount of internal “efforting” can keep my attention focused on the talks/posters. It’s like drinking from a fire hose
• and my auditory processing disorder makes it hard for me to comprehend speech, especially if there are people whispering nearby, fan or HVAC noises, or spillover noise from another room
• and my inattentive ADHD means I zone out so, so quickly that the only way I really can learn is through reading for a few reasons
  • I read much faster than most people speak, so my attention span is effectively longer for reading than listening
  • I can pace myself as I need to
  • I can go back and re-read something if I notice my mind wandered
  • I don’t have to rely on my poor working memory to piece things together–I can see them on the page
• and sitting on benches or arm-less chairs starts to hurt my body after about 20 minutes. By 60 minutes I’m moving into injury and/or migraine-from-muscle-tension regime (standing is even worse).

I’m browsing a poster session …

• but standing (or slow walking) injures me even more quickly than sitting! My POTS symptoms go nuts (lightheadedness, tachycardia, intense fatigue), my upper back+neck go into muscle spasm, and–TMI–I can feel gravity pulling down on my prolapse (thanks, defective connective tissue!)
• and the sensory experience of a poster hall is a nightmare–the loud, echoy noises, weird lighting, too hot or too cold make my head start to swim!
• and it’s a social interaction/interpersonal nightmare! I’m trying to read your poster, and you start talking to me and now my executive function slows to a crawl while I try to navigate BOTH this social interaction according to my lookup table while also processing the technical information on your poster. I both flub the interaction AND don’t absorb anything from the poster!

I’m trying to hang around the conference venue all day …

• but there’s nowhere I can actually rest (this would require a full couch/chaise longue, bed, or recliner)
• I can’t escape the sensory hell of the conference center (I would need a quiet room with sorta dim and non fluorescent lighting, and some soothing sounds like a waterfall)
• my dysautonomia means I can’t regulate my temperature, so I have a heavy backpack with layers of clothing I’m constantly putting on and off, and a water bottle, and a snack, and some knitting (to desperately eek out a tiny bit more attention focus during talk sessions)

I’m supposed to be greeting people I’ve met before …

• but my mild face blindness means I don’t recognize anyone unless I see them frequently! I am also terrible with names, so looking at someone’s badge often doesn’t clear up the mystery! So if I give you an awkward smile and some bobble-head nods … that’s me trying to fake being neurotypical!

I’m supposed to be networking and meeting new people …

• but I don’t do this! I always joke that “my momma told me never to talk to strangers (and never, ever get in the car with a stranger!)” and that’s kind of how I function. I don’t make small talk, and I really don’t get to know people unless I’m in a structured activity with them (in a class, or working together in some capacity).
• I’m also not a PI or in a position to write grants or spearhead projects, so I’m not really needing to find new collaborators.

I’ve traveled across the country or globe …

• and now I have jet lag, my fragile sleep hygiene is disrupted, and my whole self-care regimen falls apart

I’m gone for a week …

• and when I get back I’m now a week farther behind in my work!

The fallout

• The conference is hard on my body because of the chairs and standing–my feet, knees, hips will flare up, my back and neck muscles will be in spasm which sets off rounds of migraines, my POTS will flare up (in particular the intense fatigue). It may be several weeks until I can pull out of the tailspin from each of these (and the interacting and cascading effects from them).
• My sleep cycle will be disrupted for weeks (it takes me a week even to adjust to daylight savings time)
• My sense of routine and work-life balance will be off kilter for several days. This is aggravated by the fatigue and pain/injury flare, which makes it even harder to get back on track (getting groceries, cooking food, etc)

---

What is hEDS?

hEDS stands for hypermobile Ehlers-Danlos Syndrome. Ehlers-Danlos Syndrome is a collection of 13 genetic connective tissue disorders; hypermobile type (the kind I have) is the most common type of EDS.

• it’s genetic, so I’ve had it since birth
• it’s a disorder of connective tissue: my body doesn’t make collagen and connective tissue correctly. Connective tissue is everywhere–in our skin, our ligaments, our blood vessels, our organ walls, our entire digestive tract. Connective tissue is what keeps your abdominal organs where they’re supposed to be!
• the most obvious manifestation is joint laxity–all my ligaments and tendons are too loose, leading to joint hypermobility, frequent joint subluxations (frequent as in … multiple times per day), and occasional joint dislocations. Think of my tendons and ligaments as wet noodles rather than rubber bands
• the joint laxity means two things
  • I’m using muscles to literally hold my body up since my ligaments aren’t contributing much “up-ness”
  • I can get injured doing anything … like raising my arm or standing up or rolling over in bed
• widespread dysautonomia, including POTS, trouble regulating body temperature, trouble regulating electrolytes and blood volume, trouble with pupilary reflexes, digestive trouble, insomnia, etc
• it’s exhausting. It’s physically exhausting (using weak and overused muscles to do the job of ligaments) and it’s “chronic pain” exhausting. Many people who have hEDS are misdiagnosed as having chronic fatigue syndrome, which gives an idea of the kind of fatigue and exhaustion I’m talking about
• I’m in pain all the time

It sucks, and I wish I didn’t have it … and getting diagnosed at 48 was life changing. I had no idea other people weren’t experiencing what I was experiencing and I just thought I was a whiny hypochondriac. Now that I understand what’s going on, I can take some measures to improve a few things and, more importantly, I can stop making it worse by doing things that harm me, or pushing through when I need a break. And I can be kinder to myself rather than judging myself.