“Improv, who do you think you are claiming to be “inclusive” while you accuse a chronically ill woman of faking her invisible illness?”
Inconsistency bothers me. For instance, I normally include a joke at the beginning of improv-related posts. I forgot to do so for my last post because I was thinking of it more like a Where’s Whoopsie than a true improv post, and it has low-grade bothered me enough that I have almost wanted to go back and edit the post ever since.
However, I also know that I beat myself up far too much for my own inconsistencies. Does it really matter that I didn’t include a joke? Is that really a thing I should fix, or is that just giving fodder to the bully-in-my-brain? Wouldn’t it be kinder to just accept my own inconsistencies because those inconsistencies, at least, don’t actually hurt anyone?
Especially when there are so many other inconsistencies that do hurt, as I was unfortunately reminded this week?
Things I Have Learned This Week:
- There is an actress named Jameela Jamil.
- She has Ehlers-Danlos Syndrome and has done advocacy work for the Ehlers-Danlos Society. She has also been through various other traumas in her life, such as multiple car wrecks and discrimination.
- She is currently being accused by “The Internet” of faking her illness and/or having Factitious Disorder (which, btw, is “in reality” even rarer than EDS as a “rare disease”) because people suck.
- A plurality of members of the Facebook group for my improv theater agree that she just has had “too much” she’s claimed is wrong with her to really be “believable” anymore. They are enjoying putting their comedic talents to use at her expense.
This is straying entirely too close to my own triggers to know how to handle it. I call myself an irony magnet because I’m also one of those people whose life experiences (both traumatic and non-traumatic) often seem to stray too far over the line into “almost unbelievable to me, and I was there!” If I can’t disown my experiences, I can at least learn to laugh about them?
I wrote back in 2018 about how – in addition to the consistent shit of living through a year-long series of unending “is this really real??” traumas courtesy of the 9th Circle of Hell – I was further terrified there would come a day when my readers would turn from being an incredible source of support during to no longer believing I was telling the truth.
I was terrified of that just from the abusive shit that four consecutive “care providers” pulled in 2018 alone. I was terrified of that before I also went blind for a week in the middle of it all as a result of ocular complications from Ehlers-Danlos Syndrome. I was terrified of that before I also added in all of the other run-of-the-mill comorbidities of Ehlers-Danlos that people are claiming in 2020 are, “too much” for Jameela Jamil to have. I was terrified of all that before I included the childhood trauma part that is still technically separate from the systemic trauma part of my 9th Circle of Hell story.
I was then – and have been forever – terrified of being told my reality can’t be real because of all those series of unbelievably shitty things. And, that fear has taken a toll.
I have pretty consistently been afraid that opening up to others – whether in real life or via the internet – will only lead to being worse off in the long run. Being vulnerable and sharing the unvarnished Hell with others only makes me even more vulnerable when those same people eventually decide that I am the only consistent factor in why I’ve been through so much, right?
That fear has led to years of thinking that dealing with everything completely alone in dissociative silence is so much better than confiding in anyone. That fear has led to more than one occasion in 2018 when I became so afraid that I was getting too used to having consistent support from my readers that maybe I should preemptively quit so I didn’t get used to it.
I obviously didn’t quit my blog in 2018. But, I’m still slightly terrified that if I also add into this post that new information that – like Jameela – I’ve been in a serious car wreck (not involving bees, at least!) and a few other random non-Hell situations including once being evacuated by a SWAT team all in one place that a few readers might suddenly decide to doubt me. I’m still slightly terrified that if I made a single stark bulleted list of each of the “traumatic life experiences” I’ve ever had all in one place (instead of sharing them slowly over multiple years and hundreds of blog posts), that a few readers might suddenly decide to doubt me. I’m still slightly afraid that if I ever don’t fit whatever “mold” I’m supposed to fit as someone neurodiverse, with a chronic illness and trauma history – or if my own tendency to shrug things off with gallows humor or to screw up details because dissociation warps memories leads someone to notice an “inconsistency” in my own story on my own blog – I’ll still eventually be accused of being a faker anyway.
No one ever accused me of faking even the most ridiculous of the events of 2018 on my own blog. And, I remain eternally grateful for the support I received from my readers back then. The WordPress community has been consistently inconsistent-for-normal-social-media in a good way. I am glad I have opened up here.
And I am even more deeply glad that I have never opened up to anyone at that theater!
Their response to Jameela Jamil infuriates me. It infuriates me on a very visceral level that anyone would dare to think that they can judge what life is like with a chronic illness – much less what is “believable” or “unbelievable” – without being a spoonie themselves. Invisible Illnesses are called “invisible” because they don’t fit the stereotypes of what a “sick” person looks like, idiots! Look it up, dumbasses!
Also, a “rare” disease is just that: “rare!” Unless you have, for example, lived with it every day for your entire life because it’s genetic and present from birth, it’s extremely unlikely you will ever have any sense of what “normal” for EDS looks like. (And, I note no one from the theater has bothered to ask me what I think about Jameela Jamil. After all, why would the life experiences of another of the 1 in 5,000 with her same rare disorder matter to the conversation, eh?)
I honestly didn’t expect this from this theater. It’s just so…inconsistent with who they present themselves as publicly. (Not that I’m not familiar with presenting one way externally and then hiding secrets and lies behind the facade, but, argh, I wasn’t actively looking out for it this week!) I didn’t expect that level of gross inconsistency, and it bothers me in some ways more than the more overt bigotry I’m more than familiar with exactly because of that inconsistency. It is so overtly hypocritical given the stated values of the theater itself that I almost feel gaslit just by the fact that I seem to be the only one who notices that hypocrisy.
My theater is a so-called Progressive theater. We claim (yes, even on that Facebook group on posts displayed right above the Jameela Jamil ones) to be as welcoming as can be of racial, gender, sexual orientation and other “artistic” diversities. The theater (at least on paper) goes out of its way to be “representative” of the population in our casts, etc. Yet, I still roll my eyes when performers who have performed with me for over a year ask me yet again when I’ll be “feeling better” enough to not use my mobility aid in performances. (Umm never? That’s what the chronic in chronic illness means?)
I have been so ready to rip that whole theater group a new one on that very same Facebook group so many times this week. I have collected links and started posts so many times. I have whipped myself up into such a towering fury such that my Partner has had to talk me down from rage quitting so many times.
I grew up in the 9th-Circle-of-Republican-Bigot-Hell. Having idiots come up to me on the street and tell me I must have done something personally atrocious for God to punish my sibling with severe disabilities or that we needed to leave the restaurant because we were upsetting the other patrons with our continued existence was…just a random Tuesday at the local Applebee’s in Hell growing up.
Thus, I am almost consistently not afraid to speak out under my real name on any occasion when anyone with the possible power dynamics to actually change things might care to listen. The world is too consistently horrible for too many people, and I wouldn’t be able to live with myself if I didn’t. If there is any chance for change, I am pretty consistently able to speak out – even though my voice shakes.
Heck, I’ve even spoken out about individual disability issues at this very theater. Back in 2019 when, during a weekly check-in, someone who had been having tests to determine whether her GI issues were a chronic illness like Crohn’s Disease expressed her relief that she came back in the clear with “Thank God I don’t have Crohn’s. I couldn’t be in pain forever. Nobody could be. That isn’t a life worth living. I’d have had to kill myself or something. Anyone in pain forever would have to because that life isn’t ever worth living” I absolutely ensured that theater management added in “ableist” language as one of the offensive types of language that could result in discipline for theater actors. (But, I guess I wasn’t comprehensive enough because I didn’t explicitly verbalize that accusing someone chronically ill of having Munchausen’s is ableist?)
And, I want to do the same with this Jameela Jamil crap. I want to rip that entire Facebook group a new one for daring to judge the “reality” of life with an incredibly rare chronic illness from afar without even the grace to maybe ask the performer you know who has it and has shared her diagnosis what “normal” looks like for that disorder first!!
And, yet, I haven’t said anything at all so far to anyone other than my ever-patient Partner.
You’d think I’d view this Jameela Jamil ignorance as tame compared to an average Tuesday in Hell.
But, yet, I can’t seem to find coherent words to even start to explain how profoundly triggering gaslighting someone about their own experiences is.
You’d think I’d already have spoken out and this post would be about toasting marshmallows over the ashes of that theater while I burned it down because how dare they??
But, I haven’t.
Because I’m also inconsistent, just in case you had forgotten…
With Jameela Jamil, there is that additional trigger that she has “so many” unbelievable experiences that “well, any of her stories alone might be fine, but so many of them together and she has to be faking it.”
As someone who also has had so many unbelievable experiences that I came to believe those abusers who told me that it was because I deserved them all, I can’t quite seem to get over my fear enough to speak out in such a big and public Facebook group and draw all the abuse of The Internet down upon me. I can’t quite get over that feeling that I’m making myself “unsafe” in some fundamental way that keeps shutting down my voice. I have spoken out in life-or-death-situations, and I’ve spoken out about those life-or-death situations again later to try to prevent them from happening to someone else. I can speak openly about any one individual horrible social justice travesty at a time, it seems.
I can talk about individual “issues” – but I can’t tell my entire story at one time to the degree that I might also be accused of “faking it.” I still inherently compartmentalize and talk as though each individual “ism” (ableism, systemic abuse, whatever) is at that moment the only one that comprises my “story.” I don’t quite feel safe rattling off everything at once for fear I’ll be accused of exactly what Jameel Jamil is being accused of. So, I don’t quite know how to even speak out in this situation – and C-PTSD doesn’t seem like it will let me anytime soon.
On some level, I apparently still fear that I am not firmly enough in control of my own reality (despite keeping a “reality journal” for going on two years) to risk an entire theater group deciding I’m just as much of a faker as Jameela Jamil…and attacking me for it publicly on Facebook.
I’m still not consistently sure that I’m strong enough to risk being told that my story isn’t “believable” without being transported right back to my childhood. The worst part of trauma has always been having my own reality warped and twisted to the point that I spent most of my life doubting that anything I experienced was real. I’m honestly not sure I could rip my theater group that is claiming that “Jameela Jamil is a faker” a new one at this point without dissociating, muddling my own history and my explanation and ultimately making things worse.
I hate that I’m feeling fundamentally inconsistent about my role as an advocate because I’m still fundamentally afraid. I hate that if I knew it would actually change things, maybe I could endure the level of public accusation about being a “faker” my C-PTSD brain thinks will be directed by speaking up on
my own Jameela’s behalf.
I hate that maybe if I knew that I could speak without neurodiverse rambling or avoiding eye contact or dissociative gaps to make me seem less reliable as a narrator I might have more faith in the point of speaking up at all when there’s no legislative change potentially on the line. But, it doesn’t matter because I don’t know that. I’m jaded, and I honestly feel like I already “know” how speaking out would go. I’d endure a public calling out by assholes on social media that I am not emotionally and mentally ready to endure until I ended up leaving the theater entirely – and then they’d just go on doing more of the same to the next convenient Internet and/or real-world “joke.”
So, I’ve stayed silent and wondered if I should stay in improv and work toward eventually changing things later when I’ve practiced more self-care and am mentally more prepared? Or, whether I have a moral obligation to quit right now because even continuing to perform for as long as it takes to figure out how to address the underlying conditions that have permitted such cruel humor about a real human makes me complicit?
I remembered to include a joke on my improv post this time at least! I eventually do drift back from inconsistency to something approaching a consistent state of being. Maybe I should just allow myself to say I’m sorry to myself that that might take a while instead of further gaslighting myself?
I mean, I hope it’s clear who I, at least, am making the butt of my own mean-spirited joke this week! (Hint: it’s not Jameela Jamil!). Because I mean, I am still an aspiring social justice advocate in general – even when I’m an inconsistent one because trauma sucks.
But, seriously, so I don’t actually have to be bothered by my own inconsistency, can someone please help me figure out how to advocate around this whole Jameela Jamil thing without consistently triggering myself while I do it? I did mention you all have been an incredible “source of support,” right?!
Need a recap of anything I’m talking about in any post? Check out the Glossary of Terms.
10 thoughts on “Improv #20: Inconsistent Who?”
I am a lot like you in being afraid to advocate too loudly for mental health issues lest the internet trolls come at me with their pitchforks and barbs, so I used a pen name on my blog and I don’t do popular social media. I get panic attacks thinking about what could happen with enough of those nasty trollforks aimed at me. I’m tough as nails, but I also have a squishy center that inconsistently makes appearances so one day I am a badass and the next I am like Rudolph being shunned by the other reindeer.
wordpress has been a wonderful forum for me, as well, as far as acceptance and support go. That is why I am so excited about the new blogger community that’s been set up. Everyone is kind and welcoming. You can get advice on blogging stuff, promote your own blog link or share someone else’s, and we have chat room questions of various topics to get conversations going. It’s small but I find it such a safe space I am hoping it grows. I’m already doing an every other week post for mental health safespace on there and I guess for me, that is my way of advocating and speaking up…in a safe place with kind people who give me the support I am going to need if I am ever going to publicly advocate for mental health issues. So far, even though it is not a mental health based group, people have been very responsive to my introduction to the topic and you know I wouldn’t get the warm and fuzzies if I posted such vulnerable confessions on Facebook or Twitter,
I hope you figure out what to do next. I understand feeling complicit if you don’t quit but the thought of speaking up and facing harsh ridicule is terrifying, too. No easy answer there, Ultimately it has to be the choice that you can live with in the long run. I don’t believe in ‘throwing the baby out with the bathwater’ because there are some ignorant rotten eggs in the carton who will never be swayed, but you have enough on your plate wthout added toxicity from them. You gotta take care of your mental health, as well as your physical health. Does improv nourish your soul more than ignorant people offend you?
I dont envy your position. Keep us posted on how it all plays out and know that we wordpress people really are here and we do not doubt you at all. You said it yourself-invisible illness means you can’t see it so no, it doesn’t look like what ‘sick’ normally looks like. Most of us know this very well and would never be swayed by ignorance or net trolls. ❤
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It’s bizarre that people are so arrogant that they think they’re in a better position to judge the validity of someone’s story than the person themselves, especially when it’s a situation with a celebrity and they don’t actually know anything at all about the person.
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I want to come back with something more thoughtful later. I completely believe you. Though we’ve had very different experiences, I really relate to the fear of being accused ti be faking and lying.
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It’s funny how often things come down to Maslow’s hierarchy of needs. I don’t have EDS or your history but I have my own which I no longer really share because people start to think it’s ridiculous. Like you, they start to think I’m lying or exaggerating or that I somehow deserved this? Side note: I love Jameela. I think that of course, you will want to challenge the people in your group. This is where we get hit by Maslow. We need to fit in. We need to belong. We need to not be ostracized by our group. This constrains us sometimes in how honest or defending we need to be. Is the need to explain and be heard stronger than the need to belong? I have no answers. I tend to defer in my own circles; I don’t want to be left out in the cold. I’m very sorry you are going through this.
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I really don’t have any insightful words despite sitting down and thinking. I keep thinking of how doctors are trained to “think horses, not zebras” and how it fails people who have those rare conditions, just like you so eloquently write.
I believe you. I simply do. I don’t know how to articulate why.
I was checking in on my FB friends and was reminded of one who has had a lot of seemingly “impossible” things happen to her when she has EDS, chronic stuff related to that, severe C-PTSD, possible autism etc… How sometimes people don’t believe the degree of struggle she experiences because she “looks fine” and all that BS jazz. I believe her too.
I keep thinking about how people with psychosis, are especially not believed about abuse they have suffered. It’s often dismissed as delusions, and ignored. And how disempowered they must feel, how gaslighted. And of course when certain psychotic symptoms are experienced, one can be traumatised by things “that aren’t real” too, but that’s beside my point.
I honestly believe that at the intersections of multiple vulnerabilities, more and more awful abuses happen. Horrible shit is done, and the perpetrators don’t even get investigated, much less punished. Because who’s going to believe the victims, who are the outcasts of society?
I’m rambling. I believe you. I know my own story isn’t bizarre compared to so many others, and I’ve faced disbelief from people who can’t see beyond the “good Christian parents” image my parents have cultivated. They rather believe a Facebook photo of my parents smiling than my story. I know I will sound like an inconsistent narrator to many people partly because of my own amnesia, and I actually have objective external corroboration from my sister who most definitely gets deemed “sane” and “high functioning” and “reliable”. If I didn’t, I’m sure I would be dismissed as someone with a big imagination. I’m rambling…
I believe you. And while your brain will fear you’ve just fooled me… well, yeah I’ve a similar fear. You articulated it really well! That people like you who have shown me consistent support will see the inconsistencies and then believe I’ve Muchasens or something. That I’m faking it all. Because yeah I remember being disbelieved a lot, even though I’m not even sure of THOSE “memories” (maybe I dreamed it all up?)… the ones where I’m painted to be an unreliable, imaginative liar.
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Oh boy do I relate. I’ve been subtly snarked at for even sharing tidbits because it couldn’t possibly be true. I once had someone say I’d have to be a genius to make all this stuff and still remember it.😳 So I don’t share unless it’s positively bubbling over. Honestly, it sucks that we live in a world so filled with shame for situations that are so completely beyond our control. I’ve made peace with the fact that people don’t know what they don’t know and that’s okay. 💙
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I didn’t know about the internet trolling of Jameela Jamil. Thanks for the information. I hate that she’s subjected to such mistreatment by mob-mentality-level bullshit. I believe she’s far stronger than petty, hateful misbehavior can destroy, though. Just like so many other people who live with multiple challenges that would make most people cry if they had to cope with just one for a week.
I think it’s time for the capes. 💜
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I think we are on the same page, the struggle is surreal! Even I wrote a blog on this issue, would be glad if you check it out 🙂