also preserved on our archive
by Rowan Walrath
Public and private funding is lacking, scrambling opportunities to develop treatments
In brief
Long COVID is a difficult therapeutic area to work in. It’s a scientifically challenging condition, but perhaps more critically, few want to fund new treatments. Private investors, Big Pharma, and government agencies alike see long COVID as too risky as long as its underlying mechanisms are so poorly understood. This dynamic has hampered the few biotechnology and pharmaceutical companies trying to develop new medicines. The lack of funding has frustrated people with long COVID, who have few options available to them. And crucially, it has snarled research and development, cutting drug development short.
When COVID-19 hit, the biotechnology company Aim ImmunoTech was developing a drug for myalgic encephalomyelitis/chronic fatigue syndrome, better known as ME/CFS. As more people came down with COVID-19, some began to describe lingering problems that sounded a lot like ME/CFS. In many cases, people who got sick simply never seemed to get better. In others, they recovered completely—or thought they had—only to be waylaid by new problems: fatigue that wouldn’t go away with any amount of rest, brain fog that got in the way of normal conversations, a sudden tendency toward dizziness and fainting, or all the above.
There was a clear overlap between the condition, which patients began calling long COVID, and ME/CFS. People with ME/CFS have a deep, debilitating fatigue. They cannot tolerate much, if any, exercise; walking up a slight incline can mean days of recovery. Those with the most severe cases are bedbound.
Aim’s leaders set out to test whether the company’s drug, Ampligen, which is approved for ME/CFS in Argentina but not yet in the US, might be a good fit for treating long COVID. They started with a tiny study, just 4 people. When most of those participants responded well, they scaled up to 80. While initial data were mixed, people taking Ampligen were generally able to walk farther in a 6 min walk test than those who took a placebo, indicating improvement in baseline fatigue. The company is now making plans for a follow-on study in long COVID.
Aim’s motivation for testing Ampligen in long COVID was twofold. Executives believed they could help people with the condition, given the significant overlap in symptoms with ME/CFS. But they also, plainly, thought there’d be money. They were wrong.
“When we first went out to do this study in long COVID, there was money from . . . RECOVER,” Aim scientific officer Chris McAleer says, referring to Researching COVID to Enhance Recovery (RECOVER), the National Institutes of Health’s $1.7 billion initiative to fund projects investigating causes of, and potential treatments for, long COVID. McAleer says Aim attempted to get RECOVER funds, “believing that we had a therapeutic for these individuals, and we get nothing.”
Instead of funding novel medicines like Ampligen, the NIH has directed most of its RECOVER resources to observational studies designed to learn more about the condition, not treat it. Only last year did the agency begin to fund clinical trials for long COVID treatments, and those investigate the repurposing of approved drugs. What RECOVER is not doing is funding new compounds.
RECOVER is the only federal funding mechanism aimed at long COVID research. Other initiatives, like the $5 billion Project NextGen and the $577 million Antiviral Drug Discovery (AViDD) Centers for Pathogens of Pandemic Concern, put grant money toward next-generation vaccines, monoclonal antibodies, and antivirals for COVID-19. They stop short of testing those compounds as long COVID treatments.
Private funding is even harder to come by. Large pharmaceutical companies have mostly stayed away from the condition. (Some RECOVER trials are testing Pfizer’s COVID-19 antiviral Paxlovid, but a Pfizer spokesperson confirms that Pfizer is not sponsoring those studies.) Most investors have also avoided long COVID: a senior analyst on PitchBook’s biotech team, which tracks industry financing closely, says he isn’t aware of any investment in the space.
“What you need is innovation on this front that’s not driven by profit motive, but impact on global human health,” says Sumit Chanda, an immunologist and microbiologist at Scripps Research who coleads one of the AViDD centers. “We could have been filling in the gaps for things like long COVID, where pharma doesn’t see that there’s a billion-dollar market.”
The few biotech companies that are developing potential treatments for long COVID, including Aim, are usually funding those efforts out of their own balance sheets. Experts warn that such a pattern is not sustainable. At least four companies that were developing long COVID treatments have shut down because of an apparent lack of finances. Others are evaluating a shift away from long COVID.
“It is seen by the industry and by investors as a shot in the dark,” says Radu Pislariu, cofounder and CEO of Laurent Pharmaceuticals, a start-up that’s developing an antiviral and anti-inflammatory for long COVID. “What I know is that nobody wants to hear about COVID. When you say the name COVID, it’s bad . . ., but long COVID is not going anywhere, because COVID-19 is endemic. It will stay. At some point, everyone will realize that we have to do more for it.”
‘Time and patience and money’
Much of the hesitancy to make new medicines stems from the evasive nature of long COVID itself. The condition is multisystemic, affecting the brain, heart, endocrine network, immune system, reproductive organs, and gastrointestinal tract. While researchers are finding increasing evidence for some of the disease’s mechanisms, like viral persistence, immune dysregulation, and mitochondrial dysfunction, they might not uncover a one-size-fits-all treatment.
“Until we have a better understanding of the underlying mechanisms of long COVID, I think physicians are doing the best they can with the information they have and the guidance that is available to them,” says Ian Simon, director of the US Department of Health and Human Services’ Office of Long COVID Research and Practice. The research taking place now will eventually guide new therapeutic development, he says.
Meanwhile, time marches on.
By the end of 2023, more than 409 million people worldwide had long COVID, according to a recent review coauthored by two cofounders of the Patient-Led Research Collaborative (PLRC) and several prominent long COVID researchers (Nat. Med. 2024; DOI: 10.1038/s41591-024-03173-6). Most of those 409 million contracted COVID-19 and then long COVID after vaccines and antivirals became available. That fact undercuts the notion that the condition results only from severe cases of COVID-19 contracted before those interventions existed. (Vaccination and treatment with antivirals do correlate with a lower incidence of long COVID but don’t prevent it outright.)
“There is that narrative that long COVID is over,” says Hannah Davis, cofounder of the PLRC and a coauthor of the review, who has had long COVID since 2020. “I think that’s fairly obviously not true.”
The few biotech companies that have taken matters into their own hands, like Aim, are often reduced to small study sizes with limited time frames because they can’t get outside funding.
InflammX Therapeutics, a Florida-based ophthalmology firm headed by former Bausch & Lomb executive Brian Levy, started testing an anti-inflammatory drug candidate called Xiflam after Levy’s daughter came down with long COVID. Xiflam is designed to close connexin 43 (Cx43) hemichannels when they become pathological. The hemichannels, which form in cell membranes, would otherwise allow intracellular adenosine triphosphate (ATP) to escape and signal the NLRP3 inflammasome to crank up its activity, causing pain and inflammation.
InflammX originally conceived of Xiflam as a treatment for inflammation in various eye disorders, but after Levy familiarized himself with the literature on long COVID, he figured the compound might be useful for people like his daughter.
InflammX set up a small Phase 2a study at a site just outside Boston. The trial will enroll just 20 participants, including Levy’s daughter and InflammX’s chief operating and financial officer, David Pool, who also has long COVID. The study is set up such that participants don’t know if they’re taking Xiflam or a placebo.
Levy says the company tried to communicate with NIH RECOVER staff multiple times but never heard back. “We couldn’t wait,” he says.
Larger firms are similarly disconnected from US federal efforts. COVID-19 vaccine maker Moderna appointed a vice president of long COVID last year. Bishoy Rizkalla now oversees a small team studying how the company’s messenger RNA shots could mitigate problems caused by new and latent viruses, including SARS-CoV-2. But Rizkalla says Moderna has no federally funded projects in long COVID.
Federal bureaucracy has slowed down research in other ways. When long COVID appeared, Tonix Pharmaceuticals was developing a possible drug called TNX-102 SL to treat fibromyalgia. The two conditions look similar: they’re painful, fatiguing, and multisystemic, and fibromyalgia can crop up after a viral infection.
But it wasn’t easy to design a study to test the compound in long COVID. Among other issues, the US Food and Drug Administration initially insisted that participants have a positive COVID-19 test confirmed by a laboratory, like a polymerase chain reaction test, to be included in the study. At-home diagnostics wouldn’t count.
“We spent a huge amount of money, and we couldn’t enroll people who had lab-confirmed COVID because no one was going to labs to confirm their COVID,” cofounder and CEO Seth Lederman says. “We just ran out of time and patience and money, frankly.”
Tonix had planned to enroll 450 participants. The company ultimately enrolled only 63. The study failed to meet its primary end point of reducing pain intensity, a result Lederman attributes to the smaller-than-expected sample size.
TNX-102 SL trended toward improvements in fatigue and other areas, like sleep quality and cognitive function, but Tonix is moving away from developing the compound as a long COVID treatment and focusing on developing it for fibromyalgia. If it’s approved, Lederman hopes that physicians will prescribe it to people who meet the clinical criteria for fibromyalgia regardless of whether their condition stems from COVID-19.
“I’m not saying we’re not going to do another study in long COVID, but for the short term, it’s deemphasized,” Lederman says.
Abandoned attempts
Without more public or private investment, it’s unclear how research can proceed. The small corner of the private sector that has endeavored to take on long COVID is slowly becoming a graveyard.
Axcella Therapeutics made a big gamble in late 2022. The company pivoted from trying to treat nonalcoholic steatohepatitis, a liver disease, to addressing chronic fatigue in people with long COVID. In doing so, Axcella reoriented itself exclusively around long COVID, laying off most of its staff and abandoning other research activities. People in a 41-person Phase 2a trial of the drug candidate, AXA1125, showed improvement in fatigue scores based on a clinical questionnaire (eClinicalMedicine 2023, DOI: 10.1016/j.eclinm.2023.101946), but Axcella shut down before it could get its planned 300-person follow-on study up and running.
The fate of AXA1125 may be to gather dust. Axcella’s former executives have moved on to other pursuits. Erstwhile chief medical officer Margaret Koziel, once a champion of AXA1125, says by email that she is “not up to date on current research on long COVID.” Staff at the University of Oxford, which ran the Phase 2a study, were not able to procure information about the planned Phase 2b/3 trial. A spokesperson for Flagship Pioneering, the venture firm that founded Axcella in 2011, declined to comment to C&EN.
Other firms have met similar ends. Ampio Pharmaceuticals dissolved in August after completing only a Phase 1 study to evaluate an inhaled medication called Ampion in people with long COVID who have breathing issues. Biotech firm SolAeroMed shut down before even starting a trial of its bronchodilating medicine for people with long COVID. “Unfortunately we were unable to attract funding to support our clinical work for COVID,” CEO John Dennis says by email.
Another biotech company, Aerium Therapeutics, did manage to get just enough of its monoclonal antibody AER002 manufactured and in the hands of researchers at the University of California, San Francisco, before it ended operations. The researchers are now testing AER002 in a Phase 2 trial with people with long COVID. Michael Peluso, an infectious disease clinician and researcher at UCSF and principal investigator of the trial, says that while AER002 may not advance without a company behind it, the study could be valuable for validating long COVID’s mechanisms of disease and providing a proof of concept for monoclonal antibody treatment more generally.
“[Aerium] put a lot of effort into making sure that the study would not be impacted,” Peluso says. “Regardless of the results of this study, doing a follow-up study now that we’ve kind of learned the mechanics of it with modern monoclonals would be really, really interesting.”
‘A squandered opportunity’
In 2022, the NIH’s National Institute of Allergy and Infectious Diseases (NIAID) put about $577 million toward nine research centers that would discover and develop antivirals for various pathogens. Called the Antiviral Drug Discovery (AViDD) Centers for Pathogens of Pandemic Concern, the centers were initially imagined as 5-year projects, enough time to ready multiple candidates for preclinical development. The NIH allocated money for the first 3 years and promised more funds to come later.
The prospect excited John Chodera, a computational chemist at the Memorial Sloan Kettering Cancer Center and a principal investigator at an AViDD center called the AI-Driven Structure-Enabled Antiviral Platform. Chodera figured that if his team were able to develop a potent antiviral for SARS-CoV-2, it could potentially be used to treat long COVID as well. A predominant theory is that reservoirs of hidden virus in the body cause ongoing symptoms.
But Chodera says NIAID told him and other AViDD investigators that establishing long COVID models was out of scope. And last year, Congress clawed back unspent COVID-19 pandemic relief funds, including the pool of money intended for the AViDD centers’ last 2 years. Lawmakers were supposed to come through with additional funding, Chodera says, but it never materialized. All nine AViDD centers will run out of money come May 2025.
“When we do start to understand what the molecular targets for long COVID are going to be, it’d be very easy to pivot and train our fire on those targets,” says Chanda from Scripps’s AViDD center. “The problem is that it took us probably 2 years to get everything up and going. If you cut the funding after 3 years, we basically have to dismantle it. We don’t have an opportunity to say, ‘Hey, look, this is what we’ve done. We can now take this and train our fire on X, Y, and Z.’ ”
Researchers at multiple AViDD centers confirm that the NIH has offered a 1-year, no-cost extension, but it doesn’t come with additional funds. They now find themselves in the same position as many academic labs: seeking grant money to keep their projects going.
Worse, they say, is that applying for other grants will likely mean splitting up research teams, thus undoing the network effect that these centers were supposed to provide.
“Now what we’ve got is a bunch of half bridges with nowhere to fund the continuation of that work,” says Nathaniel Moorman, cofounder and scientific adviser of the Rapidly Emerging Antiviral Drug Development Initiative, which houses an AViDD center at the University of North Carolina at Chapel Hill.
“This was a squandered opportunity, not just for pandemic preparedness but to tackle these unmet needs that are being neglected by biotech and pharma,” Chanda says.
Viral persistence
Ann Kwong has been here before. The virologist was among the first industry scientists trying to develop antivirals for hepatitis C virus (HCV) back in the 1990s. Kwong led an antiviral discovery team at the Schering-Plough Research Institute for 6 years. In 1997, Vertex Pharmaceuticals recruited her to lead its new virology group.
Kwong and her team at Vertex developed a number of antivirals for HCV, HIV, and influenza viruses; one was the HCV protease inhibitor telaprevir. She recalls that a major challenge for the HCV antivirals was that scientists didn’t know where in the body the virus was hiding. Kwong says she had to fight to develop an antiviral that targeted the liver since it hadn’t yet been confirmed that HCV primarily resides there. People with chronic hepatitis C would in many cases eventually develop liver failure or cancer, but they presented with other issues too, like brain fog, fatigue, and inflammation.
She sees the same dynamic playing out in long COVID.
“This reminds me of HIV days and HCV days,” Kwong says. “This idea that pharma doesn’t want to work on this because we don’t know things about SARS-CoV-2 and long COVID is bullshit.”
Since January, Kwong has been cooking up something new. She’s approaching long COVID the way she did chronic hepatitis C: treating it as a chronic infection, through a start-up called Persistence Bio. Persistence is still in stealth; its name reflects its mission to create antivirals that can reach hidden reservoirs of persistent SARS-CoV-2, which many researchers believe to be a cause of long COVID.
“Long COVID is really interesting because there’s so many different symptoms,” Kwong says. “As a virologist, I am not surprised, because it’s an amazing virus. It infects every tissue in your body. . . . All the autopsy studies show that it’s in your brain. It’s in your gut. It’s in your lungs. It’s in your heart. To me, all the different symptoms are indicative of where the virus has gone when it infected you.”
Kwong has experienced some of these symptoms firsthand. She contracted COVID-19 while flying home to Massachusetts from Germany in 2020. For about a year afterward, she’d get caught off guard by sudden bouts of fatigue, bending over to catch her breath as she walked around the horse farm where she lives, her legs aching. Those symptoms went away with time and luck, but another round of symptoms roared to life this spring, including what Kwong describes as “partial blackouts.”
Kwong hasn’t been formally diagnosed with long COVID, but she says she “strongly suspects” she has it. Others among Persistence’s team of about 25 also have the condition.
“Long COVID patients have been involved with the founding of our company, and we work closely with them and know how awful the condition can be,” Kwong says. “It is a big motivator for our team.”
Persistence is in the process of fundraising. Kwong says she’s in conversations with private investors, but she and her cofounders are hoping to get public funding too.
On Sept. 23, the NIH is convening a 3-day workshop to review what RECOVER has accomplished and plan the next phase of the initiative. Crucially, that phase will include additional clinical trials. RECOVER’s $1.7 billion in funding includes a recent award of $515 million over the next 4 years. It’s not out of the question that this time, industry players might be invited to the table. Tonix Pharmaceuticals’ Lederman and Aim ImmunoTech’s McAleer will both speak during the workshop.
The US Senate Committee on Appropriations explicitly directed the NIH during an Aug. 1 meeting to prioritize research to understand, diagnose, and treat long COVID. It also recommended that Congress put $1.5 billion toward the Advanced Research Projects Agency for Health (ARPA-H), which often partners with industry players. The committee instructed ARPA-H to invest in “high-risk, high-reward research . . . focused on drug trials, development of biomarkers, and research that includes long COVID associated conditions.” Also last month, Sen. Bernie Sanders (I-VT) introduced the Long COVID Research Moonshot Act, which would give the NIH $1 billion a year for a decade to treat and monitor patients.
It’s these kinds of mechanisms that might make a difference for long COVID drug development.
“What I’ve seen a lot is pharma being hesitant to get involved,” says Lisa McCorkell, a cofounder of the PLRC and a coauthor of the recent long COVID review. “Maybe they’ll invest if NIH also matches their investment or something like that. Having those public-private partnerships is really, at this stage, what will propel us forward.”
Chemical & Engineering News
ISSN 0009-2347
Copyright © 2024 American Chemical Society
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More LADS ideas
Hey guys! I'll definitely write some more drabbles soon BUT I have a really good idea that I wanted to share with you all!
I'm not sure if it's been done before (and if it has, then that's okay), but my idea was to have a LADS x reader but the MC is still present. It's probably going to be difficult to workshop this idea– but I'm going to really try!
So my idea was that the reader (you) possibly just wake up in the game. Maybe in a field of flowers just outside of Linkon to really show that you don't belong here, instead of waking up in a nice, warm bed. It really sets in that you are stuck here and have to work your way from the ground up. In a world where the main character shares your name and appearance.
That's right, the mc is still going to look like you and have the same name as you, but that's where the similarities end. She will have her Anhausen Class evol while you...You'll have your own Anhausen Class evol, a direct opposite of hers and your level can be determined unlike her's (since her evol is unstable and the level can't be measured).
That's all the ideas I have so far, since I just wrote it all up, but I know what evol you'll have! I just don't know if I'll have it be a specific x reader or with all of the guys or just have an ending for each of the guys. I feel like it's going to be a bit difficult to pull them away from the MC since she's their reincarnated lover, but I'm going to try.
I also think it would be fun to have the reader think they've become the mc and then you see her from aware with one of the male leads and you're like "...what the fuck–". So then, you go into panic mode because you're worried they'll kill you if they see you. You realize that if someone wants to kidnap mc, they might kidnap you on accident. Stuff like that. It's honestly going to be a stressful ride, I feel. But I'm torn between the reader wanting to hide out and live a normal life, so you just get a job or trying to literally flee the country. Maybe living in Snowcrest would be fun. You could hide out there and live with the elderly doctor (I genuinely forgot his name) and his fox, Pie.
I definitely got to come up with more ideas before I can write this one though– let me know if there's anything you want to see! I've definitely been slacking on my oneshots, I haven't written in any of them since I posted their teasers 😞 but don't worry, nothing is discontinued! I'll work on them soon (or eventually)
That's all for now though! 🩷
Edit; now that i think about it, I'm going to add a poll for if the mc should look like the reader or not! Since some LADS mcs are just your ocs and you didn't model them after yourself. This information would definitely help me when writing this in the future, so if the highest result is "not looking like you" then I'll just come up with a name for the mc and describe her as "looking like your mc" instead of identical to you.
In retrospect, this is probably a dumb question, but I just wanted to make sure! Because, of course, it would be cool if she looked exactly like you and had the same name, but if she didn't, you wouldn't have to hide and try to disguise yourself so the male leads don't potentially kill you, you don't get kidnapped, people don't think you're her, and stuff like that.
Because it would probably be very difficult to get a job in a world you just wound up in. Especially if you have no form of ID or birth certificate, so I've got to really think about this tbh—
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Talking about The Search with some moots on twitter, got me thinking some really interesting potentials.
It’s in character that Zuko would forgive Ursa for forgetting him and want what’s best for her and intellectually understand why she did what she did, but I think emotionally, beneath the surface, he would feel deep pain at that.
Ikem and Kiyi’s existence clog up the plot. It’s too many cooks in the kitchen. Dont get me wrong, Ikem is a fine dude, he seems chill, and I love the dadko moments that come from Kiyi, but it’s too much going on directly linked to the main cast’s lives. That’s why it’ll never be addressed, which feels cheap and makes the reader feel cheated. Like Zuko has a STEPDAD now?! That should be a huge plot and discussion, but it’s not. It’s glossed over. There’s too many characters.
The whole gaang could’ve looked at Zuko, remembered what Ozai looked like, and laughed at him for thinking Ikem was his bio dad. That made no fucking sense. Sadly for Zuko, he’s the spitting image of Ozai. I could see Zuko being in denial, but Aang should’ve laughed at him tbfh.
Like Kiyi and Ikem wouldn’t come up in a gaang adult movie they’d be forgotten and that’s why they shouldn’t have existed.
Kiyi also just feels like some weird bandaid consolation prize for Zuko to toss Azula aside ??? It’s weird idk.
Like why are Ursa’s parents presumably dead? They easily could’ve been alive 💀 Ursa should’ve been vibing with them and zuko meets normal grandparents that were hidden from him for years … it feels less cluttering of a story than making up Ikem and Kiyi and then you would just presume the grandparents are old and rickety and have to hang back in Hira’a most of the time so it’s not like bugging your mind with questions and adding more unaddressed storylines!
I’m okay with the Ursa forgetting her kids plot. I do think it makes her shitty, but I’m okay with the tragedy of it and her being kinda a shitty mom.
Ikem is low key a freak for helping Ursa forget her memories then settling down with her like NOTHING HAPPENED
I wish that Ozai and Ursa once had feelings for each other and he slipped into “madness” in an “absolute power corrupts absolutely” kinda way. It’s more interesting than “he’s always an evil big bad gonna tie you to the train tracks” vibe and eliminates the need for stupid ass Ikem. I remember Bryke mentioning this once too in some old ass trivia bit or something for “Zuko Alone”.
The worst part about The Search is the glossing over the emotional scenes. What readers had wanted for years so badly was the emotional payoff of either Zuko facing his mother was dead, or actually seeing them reunite. Also— the most emotional— Ursa reacting to Zuko’s scar is entirely skipped. It sucks.
Not letting Zuko and Katara have a single conversation when Sokka and Zuko do and Aang and Zuko do is insane. Katara had so much to feel and bond and hurt over Zuko with (yes platonically in this case I’m not that in denial @ antis). It sucks so bad they cut this entirely for shipping bs hatred because BRYKE are 6 years old emotionally.
This would’ve been a much better and emotionally charged story on screen. It was really cheated by being done on a limited page comic. It needed more time, voice acting and music.
It’s implied heavily, as many of us always assumed, that Ursa was SA’d.
If zutara was canon, I think Katara would be furious at Ursa and it would be an interesting conversation and story. Maybe I’ll write that fic
Regardless of these many flaws, the story is much more in character than The Promise or Smoke & Shadow. I hate those comics so bad for making the theme let’s all kill Zuko and be nonchalant if he dies! And making it so that it’s like he never had a found family and still no one loved him and also the weird submissiveness they gave to Katara and the retconning of everything and the repetition and recycling of plots and it all is so bad… 💀😭
What thoughts do yall have? Happy to discuss 👀
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cw: discussions of bullying and aphobia
Hearing aroace peoples' existential crises over their friends discussing crushes, as someone who was socially isolated and severly bullied for their whole childhood and most of their adolescence so had NO friendgroup until adulthood and NO community or inclusion in literally anything (and when it came to sex and romance the other kids explicitly considered my potential involvement in either to be impossible / laughible because of how "weird" they found me (my autistic traits before I even realised I'm autistic)), felt like starving while listening to someone else complain about the food they're actively eating.
Food intolerances and dislike of different foods (as metaphor for being aro/ace) ARE important and difficult to grapple with when you're expected to eat specific foods in specific proportions at different times - but man did it sting until I realised why I felt that way and gave myself a talking to since my trauma doesn't justify belittling the very real struggles of aroace people.
I guess since the choice between 'stay alone or conform' was never really a choice because I was rejected no matter how cis straight or allo I was it taught me to go "fuck it" and accept myself regardless of what other people do or say (which ironically has lead to me becoming dramatically popular all of a sudden at uni, which has been weird to get used to since I have literally no experience with any of this - platonic or otherwise - which did lead to some advantage being taken of me but f*ck it we ball ^^'). And I guess it's just been difficult understanding why anyone would care so much about whether they're "normal" or not? You really have nothing to gain from that, safety is not guaranteed in conformity so best to live aroace and damn all aphobes to hell if they have a problem with that.
It's a mindset I'll never understand and that's only ok now insofar as that lack of understanding no longer results in misplaced anger at people who, for a time, I had once considered spoilt, ungrateful and out of touch. Basically, I'm full of sh*t and to every aroace person reading this you deserve good friends that actually respect you for who you are and do not even TRY to get you to change your mind about sex or romance. Have a lovely day x
Sincerely,
An aggressive emotional support anon
I'm genuinely sorry for all the hardships you went through. I don't mean to equate at all, truthfully from reading you and considering I WAS asked some of those questions as a kid regardless (the "who's your crush" bullshit and whatnot), it definitely sounds like I had it less hard than you did, but... I was bullied in elementary school and middle school, also not necessarily because I was aroace (I don't know why it happened really, I don't know if anyone ever knows, I boil it down to... me being me and there being something fundamentally wrong with me ig), and I definitely also get some of those feelings of "oh boo hoo you call that struggle" boiling in me when people discuss their own past struggles sometimes, so... Yeah, every one person's experience is unique, but I can at the very least very much sympathize.
I think a way it manifests in me is that I now have that compulsive, debilitating fear of being "othered" in any way, shape, or form, so I guess being aroace doesn't help my case. But at the same time... Well, like you brilliantly put it, when you're in a situation like that, no matter what you do, you won't be accepted anyway, and having that knowledge back then is probably also what lead me to figure myself out as aroace so early in life. Because I was treated as this much of an outsider, I ironically had that much room in my own head to form my own identity, far apart from others and the need to conform. Yeah, that identity may include a "piece of shit that doesn't deserve to be supported of part of a group" side that's been forced in, buried deep down and can't be erased, but... It also includes asexual and aromantic, and it's been cemented so hard from so early with such self-affirmation that later down the line, it saved me from a lot of stuff. I never had to force myself into a romantic or sexual relationship because I was undoubtably aroace – and people saw me as an outsider and an eyesore anyway. I spent years of being scared to go to school or out in the street every day, but later down the line, somehow, I feel it saved me from doing so many things I wouldn't have wanted to do.
...Bleh, sorry, didn't mean to turn this into me-me-me crap when you had the courage and sincerity of not only showing your experience, but finding the strength to show more love, understanding and support than a lot of people probably cared to give you for so long, despite all the pain you felt for so long. I guess I just wanna say... This take is definitely inspiring, so thank you on behalf of myself and others I'm sure, but also... I hope that, for yourself, you're also managing to own what you lived through in a way that allowed you to affirm yourself more strongly (it sounds like you are, I hope it IS the case), and most importantly, I hope you're in a much better place in your life now and you'll never have to return to that level of loneliness again.
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