Denial is not a river in Egypt

I’ve found myself saying this phrase a lot throughout my life.

I first learned it in recovery circles – Adult Children of Alcoholics as a teenager, initially.

Followed by Codependents Anonymous later.

And more recently I’ve been saying it in regard to the medical world’s inability to see and diagnose a form of Ehlers-Danlos Syndrome when it’s staring them in the face!

I’ve lost track of the number of people who have posted their hopelessness of ever being believed by yet another dismissive and narcissistic doctor who doesn’t recognize it yet. Geneticists and neurologists seem to be the worst offenders. I have a theory on that I’ll share momentarily.

Anyway, I became all too familiar with this notion as my own father absolutely refused to admit he had ANY kind of trouble, despite extremely obvious signs to the contrary. (No wonder I had self-esteem issues growing up! I was right much of the time, but he made me think otherwise and refused to listen.)

He could dish it, but not take it. Followed by other family members who wanted to just dismiss any signs of health trouble in me as being all in my pointy little head. (I considered myself a likely “hidden Aspie” then, along with most of my family in 20/20 hindsight, hold that thought*. I’m starting to say I was raised by a feral pack of engineers, smile.)

I’ve met numerous zebras (fellow EDS patients) who have experienced much the same in regard to their health conditions. We all seem to have one or more family members who just can’t wrap their brains around all our pain and suffering, even when it’s quite evident in front of them.

I’m sure some just can’t bear to, even if they do see it and care, though that wasn’t true in my case. Most really didn’t care about my well being. (Sorry guys, it’s the truth, which will always out.) I did have one beloved (and equally afflicted) elderly aunty who did sympathize. (Alas, she just left us at the respectable age of 95 in 2020 of non-COVID – related causes.)

So I say once again:

Denial is not a river in Egypt!

Yes, it’s a bad pun (de Nile, right?). But it’s effective. And it applies way too often in the EDS community I’m finding. I’ve never met a more rigid, black and white thinking group of people in my life – outside of my family!

Yet the vast majority of us are quite book smart. So how can we be so blind to evidence right in front of us? I guess we’ll have to blame our sticky brains. (We’re also an anxious lot, though not always.) 2016 update: I’m learning this is a common trait of ADHD – leaping to conclusions, and trouble with all or nothing B&W thinking. (Why dialectical behavior therapy may help some of us.)

We also seem to be an extremely codependent or over-functioning bunch on the whole – extremely fond of helping others, even at our own expense. Even when we know better!

And, sadly, even when others outright reject our help or ask us not to. (This is overstepping others’ boundaries, by the way).

I call it being too nice. Unable to say no. Not able to mind your own business. If you find yourself saying “but I was only trying to help!” a lot – this is a big red flag that you’re stepping in where you’re not wanted.

Even if you’re right – it doesn’t matter. It’s about respecting people’s boundaries. (Tip: if you can’t bear to watch, don’t look! Yes, this can be really hard, I know. I battle it too. Let go and let God.)

The complement to codependency is narcissism. Or perhaps it’s really just another form of it: narcissists think they have all the answers for everyone. They can dish it but not take it. They’re always right. And they never have any problems, or rarely admit to any themselves. Or brush them aside or minimize them and keep focusing on yours.

Or, in some cases, they have ALL the problems, when you have as many or more. (They need all the attention). Codependents are often attracted to them, or rather, may be the only ones willing to put up with them, and often find themselves in one-sided relationships with them for better or worse. (Raises hand. Working on this.)

They also may intellectually bully people or be impatient with those who don’t know as much as they or don’t join along. Or, they impose their will on others without any regard to how the other is receiving it or faring.

Well forgive me for saying so, but a lot of doctors – and nurses – I know sure want to help people. A lot. Isn’t that why you go into the profession usually? (Except for the few who really do just want to make money, poor souls.)  So by definition you’re likely a bit codependent to begin with.

I’m not saying helping people in itself is wrong, mind you. It’s not. And it’s probably saved our species from extinction. (I wouldn’t be here without medical help among other types of help for sure!)

But doing so by overstepping boundaries, steamrolling, or when it’s not welcome or invited is. And failing to listen to patients because “you know better” even in the face of incontrovertible evidence is. (Oh the money and time we could save if some doctors and nurses would just listen!)

That said, it occurs to me that many of our doctors and nurses are likely undiagnosed subclinical or super high functioning (low support needs) autistics themselves also. And it strikes me that many of the brightest IQ’s are the ones who go on to pursue the chewiest topics like genetics, immunology and neurology. (God complexes, anyone? But I’m a brain surgeon! You should bow down to me!)

No, not all are this way, of course. I’m not that black and white thinking, don’t worry. (You can’t debug programs like I used to if you are too rigid thinking, trust me. The computer always wins, not matter how sure you are of the answer! ) But I sure see a likely trend or tendency toward it in these professions.

Further, you smart doctors and nurses were (or are) all likely the best and brightest students in the class. You’re definitely not dumb! Aced most exams, and studied and learned more than everybody else. Often while raising families.

You folks are truly the tops! But… it is just possible, in fact, I’m pretty darn sure it’s super likely that some of the material you learned so fast and so well (even while sleepless!) may have been wrong or outdated!

I.e, you are the best and brightest among us, but… you may also be slightly stubborn and “sticky” in your thinking and latched onto bad info without questioning it. (I know I was a fantastic fact regurgitator in my school years at least.)

That is, you latched onto the first thing you learned about EDS in school and now your sticky brain won’t let it go! Heck, you may have even been rewarded for learning the wrong information so well if you graduated magna cum laude! But how would you ever know it was wrong? You just passed the test and graduated top of class.

So if you only learned or were told that EDS is rare and all EDS patients have stretchy skin because that’s what you were told in school, well… how could you ever know that thin skin is also a feature, and not all are stretchy? Among many many other signs…

If you never learned that there’s a lot (and I mean a lot!) of occult (hidden, hard to see) Chiari malformation in our population (aka “Chiari Zero”), as well as tethered cord, but were told instead that that is also extremely rare, why would you ever suspect it? By the way, leading experts say EDS as a whole may run as high as 2% of the population. That’s 1 in 50 folks – far from rare! (And awfully similar to the comorbid autism rates currently as I write in 2016, ahem. Hmm!)

Update in 2020: they now say that the new HSDs and EDS combined may run as high as 3.4%! Far from rare!

If you were told that ALL EDS patients are extremely hypermobile (by which you probably mean just bendy, unfortunately and mistakenly) or present with life-threatening issues, and everyone else is “just hypermobile” without EDS, then why would you ever suspect the stiffening arthritic 30-something complaining of IBS, migraines, depression, neuropathy, hemorrhoids and allergies but who scores a low 3 on the Beighton Hypermobility scale?

Especially when she looks so young and healthy! And is an over-achiever to boot, because well… she’s likely Autistic or ADHD and… society seems to demand it of her! (Suck it up, buttercup!)

(News flash: I was diagnosed as actually Autistic and ADHD in June 2021 after all these years and enough suffering to finally hit the damn radar. Kieran notes that we only diagnose traumatized autistics, if you notice.)

I could go on, but you get the picture. In doctors’ defense, how can they recognize us when they’ve likely been mislead and misinformed inadvertently by overly busy medical schools intent on churning out the next batch?

Toss in their likely “sticky brains” that latch onto whatever info they were thrown (and well!) and it’s no wonder they aren’t seeing us right in front of them. We are the frequent medical flyers after all, even if you never quite put together why.

Further, why would they bother to go back and learn more about what they’ve been told is a rare disease after they’ve graduated? Any more than I would go back and learn the New Math since graduating in 80s? I didn’t have any kids… I never needed to. Doctors do get CME’s, but there are thousands of topics to choose from. EDS comprises but a few of those, and it’s not very sexy unless you have a vested interest in it.

But it seems even our families can sometimes fail to see us too, standing there with all our stripes showing, if only they had zebra-colored glasses to see them with. Toss in likely organic depression for most of us, and it’s no wonder many patients give up, stop trying to get diagnosed. Stop seeing doctors. Stop talking to their families.

And sometimes, stop living. (No, I’m not being melodramatic. Suicide is not uncommon for us, due to so much pain and misunderstanding and invalidation and loss.) You also sometimes have to “grieve” the loss of your family members before they’ve died, as they become emotionally unavailable to you despite still being physically present. Sad but true. (Been there, done it.)

To my fellow zebras (and zebroids) – stay strong. You are not losing your minds, just your bodies, even if it feels like the former sometimes. (MCAD and pain-driven brain fog sure don’t help!)

Please find a support group any way and anywhere you can. You deserve it. Especially if your family have dismissed or invalidated or abused you at all. You can build a second chosen family and surround yourself with the love and support you need and deserve in spite of your genes. And there is some recovery possible, keep the faith!

But to all our doctors and nurses (and family members) – we don’t hate you! You ARE smart. But… please just consider being a little more dialectic (open-minded), and allowing for other possibilities, especially the possibility that your patients may know as much or more than you about their conditions even if it’s not obvious to you!

Especially in this internet-driven information age. We aren’t out to get you! We just need your respect, support, and an ear. We know you’re just human, but you have to allow yourself to be too, okay?

We don’t mind. We’ll respect you much more for admitting “I don’t really know about that, I need to look into it further”, than to just dismiss us out of hand because you think you know it all or are too busy.

And if your case load is just too large for you to handle us, tell us that too. Then we know it’s not personal. You are, after all, just humans, even if pretty super ones! (We know med school is no cake walk, and your work loads are heavy.)

We are your allies – we are very driven, and smart on the whole just like you. We’re just lacking the collagen to get through medical or nursing school in most cases, but have sometimes learned nearly as much or more on our own. And some of you have made it all the way through – and don’t even recognize your hypermobility yet. The majority of us ended up in other fields (engineering, accounting, the arts, teaching), or disabled. But we didn’t lose our minds, I promise.

Let us be your ally. We’ll make a great team. Thank you for reading. And thank you for considering us at all if you do.

We really need all the help and support we can get. It will also make all our lives easier – doctors’ as well as patients’ – as we’ll stop doctor (and friend and family) “shopping”, and save the system millions in needless testing for all the wrong things. We can do this!

To your health,

Jandroid 3.0