Beware of Gatekeeping

I’m doing a lot of warning lately, aren’t I? “Beware of Hammer Syndrome” last month. And now, “Beware of Gatekeeping” this month. Hey, it’s October 2018 as I’m hatching this post, so it sort of fits with the Halloween mood, right? (Beware of Ghosts! Boo!) Editors note: This post was first made available in early October on Patreon.

What is gatekeeping, Jan? And what does that have to do with the Chronic Constellation you talk so much about? Settle in and I’ll tell you…

As the name implies, gatekeepers are people who like to keep other people out of a closed, gated community or club. In the middle ages we heard of castles having moats around them and a draw bridge that would only be let down for expected or approved visitors to enter the castle walls.

In more recent times, various gated communities seek to keep those who haven’t been approved out of their neighborhood, thus keeping up property values. (Allegedly.)

But I’ve encountered gate-keeping in medicine too. That is, a tendency for either patients or doctors to be unwilling to “award” or recognize a diagnosis of a disease or condition for various reasons. Either they think it’s too rare, and you could not possibly have said condition as happened with me until I finally got diagnosed with hEDS in 2012.

Or they insist upon or require too many specific bio-markers and other signs to be willing to give out a diagnosis, despite many clear signs of a disease or condition that match.

My doctors had only been told about the grossest signs of the rarest types of hypermobile Ehlers-Danlos syndrome, so did not feel I belonged or fit into that “community” until I became symptomatic enough (and quite undeniably alas) to “pass” through those closely guarded gates and get diagnosed in February 2012.

Many with milder signs and less hypermobility or flexibility were finding a similar fate until the International Hypermobility Working Group hatched the new diagnostic category of Hypermobility Spectrum Disorders allowing a few more people into our special diagnosed “club” as of March 2017. Think “sub-clinical hEDS” if you will. (<- Editor’s note 1/14/19: No. It’s not sub-clinical. It’s just not yet visible to our gatekeepers. It’s still coming into focus for doctors who are still only looking for low-hanging diagnostic fruit, that is the more visible rare forms of EDS. It’s very clinical, as someone reminded me on Twitter, thank you!)

Conversely, scientists booted Pluto out of the community of full planets back in 2006, re-classifying it to a “dwarf planet” then. A truly arbitrary distinction in my view, since Pluto hadn’t changed in size or moved any further away from the sun.

Thus, they were acting as “gatekeepers” for the community of “full planets” as we know them. I insist to this day that Pluto belongs in the Full Planet’s Club despite this, and am happy to hear rumor it may be allowed back in sometime soon. It didn’t change a spot, after all! Or not from my point of view.

Is self-diagnosis of autism valid?

More controversially, I’ve seen a lot of what I call gate-keeping in the autism community. That is, a tendency on the part of some autistic people who have received a formal diagnosis from an approved medical authority to deny others who closely identify as autistic but aren’t yet diagnosed entree into the community in the absence of such a formal diagnosis.

The main argument has been that everyone needs to jump through the same number of hoops, and suffer the same amount of delay and distress as the existing members before they can be allowed in the group. There is some fear that there are not enough resources to go around if everyone who self-identified as autistic proclaimed themselves to be without any “vetting” to speak of, and began demanding the same services.

I’m sure there is a little merit to this argument at some levels – there are only so many speech-therapists to go around, and occupational therapists and other resources.  But that just means we need more! Even if everyone jumped all the hoops magically tomorrow. Nay, even more-so: there’d be a flood of demand.

But many autistic people in and outside of this formally diagnosed community feel this is an unfortunate and arbitrary bit of gate-keeping, since obviously the people who are diagnosed were once also un-diagnosed and “suspecting” themselves. They didn’t magically “become” autistic once diagnosed – they were autistic all along too.

It is truly unfortunate that there is a feeling of scarcity of resources to diagnose suspected autistic people, and support them. It’s clear there’s an upward trend in the numbers, so more resources will be getting procured in time: we have to. Heck, once upon a time there were none!

But I have to agree with those who feel the undiagnosed – of any flavor or disease – still need and deserve support even so. Nay, I almost feel they need even more than the diagnosed, since they are subject to medical and other forms of gaslighting (questioning and invalidation of their real lived experience and pain).

Could a small handful of imposters sneak through and suck up some valuable time and resources from the “real” true patients in both the hypermobile and autistic camps? Sure. But I assure you they are very few and far between. And will likely be found and rooted out in due time.  I’ve even had to do this in some of my Facebook support groups. (Boot out fake profiles.) But not very often at all, truly. And frankly, I can’t see why anyone would.

I think we’re just sometimes a bit too predisposed to scarcity thinking and need to relax our hearts and minds and open our gates to the less visibly affected patients in both camps. Frankly, my life was MUCH harder before I was diagnosed or even visibly disabled by my hypermobility as I had no way to explain all my myriad odd pains and sensations in my body and semi-anaphylactic reactions thanks to my connective tissue disorder.

I was subjected to endless amounts of unsolicited and usually unhelpful advice, since my condition was heritable. (That is, there is no cure or easy remedy.) Oh sure, some actually guessed correctly about some of the therapies I now currently espouse for myself at least. (Low sugar, high dose vitamin C and magnesium.) But without knowing this was genetic, everyone just assumed I wasn’t trying hard enough, or taking the right magic “pill” yet when I wasn’t “cured” by it.

Lo and behold, there is no cure for either autism, nor hypermobility. Only supportive therapies with mixed results that don’t work equally well for all patients. And many with autism want nothing to do with a cure, though some don’t mind improving some symptoms and issues. Ditto hypermobility.

I think it is usually the less visibly affected patients in both camps that suffer from this gate-keeping, as we “mask and pass” in both worlds as “normal” or healthy. And people question our complaints of pain and distress of all kinds (emotional and physical) from our various conditions no one can readily see. So we wander in the un-diagnosed “desert”, unsupported except by our few dedicated friends and family (not all) who stick by us despite the lack of validation and answers from Big Medicine.

As one who wandered in her own un-diagnosed and unsupported “desert” for literally over 40 years, I’m much more inclined to reach a hand back and bring other suspecting un-diagnosed patients with me. I have frankly yet to meet any who are truly faking. So I truly do not fear this experience really at all.

If we lack for any resources, it might be doctors and therapists who are willing to recognize, diagnose and support us. But that just means we need to lobby and push for more. This has always been the case. Think about it: once upon a time, no one was diagnosed with either condition! This doesn’t mean they didn’t exist IMHO, they just weren’t recognized, pathologized, and most importantly: medically supported.

Diffuculty diagnosing MCAS leads to lack of support for patients

And don’t get me started on Mast Cell Activation Syndrome – one of our most common comorbidities. Doctors are still so insistent on lab markers for diagnosis that I’m willing to bet less than half of all patients who show clear signs of it get diagnosed. The tests for mast cell mediators in urine are so volatile that there are loads of false negatives. And even when handled correctly (they require chilling to fridge temps the entire way from urine stream to final lab), few pass the tests even still despite being super sick with really clear signs in some cases. (The stories I could share…)

I could go on but I think you get the drift. I do think we need a little gate-keeping – we want to keep obvious fakes and posers out. And do proper, careful differential diagnosis. Just like I keep phishers out of my Facebook group. (People who pose as patients in chronic illness groups just to post clickbait articles to sites loaded with malware.) But again, I honestly haven’t run into any true fakers who are just attention-seeking or truly hypochondriacs.

Quite the opposite. I’ve only run into loads of fellow wanderers, seeking a camp and family to join in their journeys. But until more join me in lowering our draw-bridges, we’ll continue to think both conditions (and more) are “rare”, not just rarely diagnosed.