My long time followers may have noticed that I update my home page every month under News and Events to talk about whichever comorbidity or comorbidities (plural, often) it is the awareness month for. E.g. September was both Chronic Pain and Chiari awareness month. Two much too common comorbidities for all of our liking, sigh.
Several other months have multiple comorbidities highlighted, like June is both Lipedema and Migraine awareness month e.g. (As well as Pride and Men’s health month.)
But October, well, October is… extra aware! lol
And how, ow. It covers:
Facilitated communication Awareness month aka AAC Awareness
All of which affect our community to varying degrees, some more than others.
I should probably stop using the term comorbidity too. Someone pointed out on Twitter that it keeps pathologizing us and our conditions. Which may sometimes be appropriate but not always. I’ll keep trying to use co-occurring conditions instead.
And, ADHD is a neurotype like autism is, not just a condition or disease. (Though I do think our treatable poor dopamine balance could still qualify as the latter.) And Facilitated communication isn’t even a condition. It’s a need by some non-speaking members of our community as so well documented by my friend Tania here on Twitter. (Twitter account not required to view.)
And you all (should) know how I feel about Dysautonomia by now – I consider most forms in the EDS community to be the likely love-child of weak connective tissues lending to floppy valves and veins, making it harder to literally pump our blood back up to our hearts and heads. Combined with hypovolemia (low blood volume) this lends nicely to a lot of POTS.
Then there’s also impinged neurology driving other forms of dysautonomia. Gastroparesis from squished vagus nerves anyone? Vomit when you turn your head to the left, get sick when you tip your head back? Impinged brain stem or spinal cord… Oh and check for a retroflexed odontoid too while you’re at it.
Basically, almost no one with any form of connective tissue disorders is exempt from some form of Dysautonomia IMHO. And some unlucky souls get to experience multiple causes and types.
But some rare unlucky folks with Familial Dysautonomiaactually lack full enervation of their bodies as seen in some rare types of Ehlers-Danlos syndrome such as clEDS and a condition called ROHHAD. Oh sure, they don’t feel much pain. But uhm, guess what? They also injure more often and worse, and in more life-threatening ways for this same reason. (I’m pretty sure I got my friends dendrites… and uhm, she can have them back!!) They also struggle to regulate their blood pressure and more in serious ways. So… careful what you ask for…
Why so many of us also experience depression of all levels and kinds, often varying over our life-spans I do not yet know. But… dysthymia and Bipolar Disorder (I and II) are quite common among us. As is Borderline Personality DIsorder.
Considering a majority of us are finding we are also neurodivergent, this doesn’t surprise me either. As it’s quite hard to feel good about yourself when you don’t entirely fit in, if at all into the socially accepted “norm”. Which needs to change natch, but until it does… we’re stuck. (Depression is extremely common in the autistic community, as well as among the EDS community too, alas.)
So, October is.. extra. Extra aware. And extra exhausting for folks usually expected to be doing the awareness raising. (Including me.) Especially if you are also autistic, and just got done surviving April and ongoing current events related to the world’s understanding of autism this year. But you also have ADHD, smile. (Yes, some of us have/are both.)
Scattered? Disorganized? Interrupt a lot? Emotionally volatile? Struggle to start and or to finish anything? Lose your keys a lot? I suspect you. We are those folks who are loaded with great ideas, but rarely see them through without help. We are prone to speeding, running into things and people (EDS doesn’t help with added clumsiness), struggling to start things we should but don’t want to, but also unable to stop sometimes once we’re hyperfocused too! (Yes, quite the combo.)
It’s really more of an interest imbalance or deficit, more than attention. If we want to do something? Boom – done! Even if it wasn’t the smartest time, way or place to do it. If not? We may literally spend all day stalling and putting the thing off, even failing to eat or drink enough. (Co-occurring depression, rejection sensitive dysphoria, anxiety and OCD don’t help either.)
What I will say about ADHD for now, is that it needs a new name – badly. Besides being misleading and centered on allocishet boys and their behaviors, we still speak of it as a “disease” or condition that one “has”. Probably because in most cases some aspects of it can be treated to some extent with medication, including the well known Adderall, and Vivanse and more.
But, in reality, aside from a dopamine imbalance, possibly involving a receptor issue, it’s also a neurotype just like autism. So, we really should stop saying we “have” ADHD. We “are” ADHD-istic. But that just doesn’t sound right yet, natch. Ideas welcome. (Many of us are also finding we are both autistic AND “have” ADHD, or at least traits of both, including the common “comorbidities – Sensory Processing Disorder, Dyspraxia, Misophonia, OCD, more.)
So, can you see why I’m calling October… “extra”? There’s a LOT going on this month, and I don’t mean school and Halloween!
I do hope you’re all managing well out there, or as well as you can at this challenging time. Best of luck.