#anywho i’ve always felt a lot of connection to those with chronic fatigue

[mars-ipan]

Ya got any rants stored up? Long-burning hatred?

i FINALLY found one i’ve been holding onto this ask waiting for the opportunity.

i HATE how people treat people with anxiety disorders. it’s endless pity mixed with complete incompassion

like ok. obligatory i have generalized anxiety disorder here. a lot of things make me stressed and when i’m having bad anxiety attacks (which can last days and sometimes put me into month-long spells of misery) i get physically sick, to the point of throwing up and fever. i also tend to go nonverbal/low-verbal during these periods of time (usually bc i’m nauseous.) i’m also very prone to migraines and have a tic and wear a night guard due to jaw clenching etc etc you get the point it affects me.

when i share these symptoms with people (assuming they don’t have similar symptoms) i get a lot of frowny faces. “owh i’m sorry :( that must be awful how horrible“ and the like. and it’s never said in a way that’s actually kind. it’s said in the way people talk about those aspca commercials. and it’s never actually come from a place of genuine concern- it’s superficial pity apparently meant to placate me. i hate it

and that’s assuming i even get that reaction at all! usually when i try to explain to someone that i’m experiencing symptoms of some sort like “hey i’m sorry i can’t really be productive right now, i’ve got a lot of brain fog” i am ALWAYS dismissed. EVERY time. maybe it’s because i’m quite skilled at coping and masking. maybe it’s because my panic attacks don’t (always) look like wailing and thrashing and choking on air. but for some reason people don’t seem to understand that yes my anxiety disorder is actually disabling for me sometimes. i will ask for an accommodation i need, be compared to someone else with different needs from me, and then be told i need to just suck it up and deal with it. and i am SO! TIRED! OF! IT!!!! the amount of times i’ve told people “hey please don’t say that to me i’m prone to paranoia about xyz” and then been yelled at because “it’s not that serious take a joke” is ABSURD. hey maybe stop telling me my cough is covid bc now i have to spend the next 3 hours reminding myself that i don’t have any other symptoms asshole!!! jesus

and THEN when i actually DO find a way to cope or utilize the way my brain works or god forbid crack a fucking joke about it people get mad at me. “see i knew it wasn’t a big deal” or “so you’re actually fine” or “that’s not funny” i am. so tired of it

and then i go online and see people saying that disorders like anxiety and depression have been destigmatized and we’re treated basically the same in neurotypical society. motherfucker i did not go undiagnosed for 17 years with several doctors telling me it “wasn’t anything to worry about” despite my family history and clear signs from a young age just to be told my disorder is respected. if i say my anxiety is a disability i get called dramatic and am told to stop taking attention away from people who need it- or not to call it a disability because “it’s not that bad” and i’m fine because clearly having a disability makes every second of your life miserable of course of course. hell anxiety is demonized too! not as badly as many other illnesses but it’s still demonized!!! if i tell people “hey i have anxiety so please be careful with xyz” they act like i just asked them to let me do anything i want without consequence. there’s literally a whole fucking stereotype of people using “anxiety” as an excuse to be lazy or an asshole or entitled. as someone whose anxiety manifests in depressive spirals (freeze response) and rejection sensitivity (doom spiraling) this is Not Great!!!!! like i am hypervigilant about enough things i do not need to add “will these people get mad if i explain how my brain works” to the list

and about the rejection sensitivity. i HATEEEEE when people judge me for crying because they’re upset at something i’ve done wrong. “mars if you’re in the wrong then you’re not the victim” who the fuck said i think i’m the victim???? i cry because my brain takes “can you pls stop doing this it genuinely bugs me” and turns it into “you’re a horrible person how could you do this to someone they hate you.” but just because that happens doesn’t mean i’m not capable of rational thought!!! i KNOW realistically that my friends are good communicators and share that stuff because they like my company. i just need to cry about it as well. that doesn’t negate my logic or say i won’t actually try to improve myself. i’m just upset that i made the mistake. obviously i’m gonna fix it. that one REALLY pisses me off esp when i warn someone in advance that i do that. like calm the fuck down i’m not even pointing out that i’m crying rn this isn’t about me stop making it about me.

ANYWAYS. it’s really frustrating to deal with this shit from nts and then go to an online nd space for community and hear people talk about anxiety disorders like we don’t face ableism. just because it’s quieter doesn’t mean it isn’t there. that AND the “it’s barely an issue” girlie i was told i wasn’t disabled enough by doctors my whole damn life i am NOT about to start hearing it from you too. you can drown in the ocean or a swimming pool or a puddle. doesn’t fucking matter. the hypocrisy irritates me so bad

#ask #ghost #marzirants #i am sick of being told i’m normal and then getting yelled at for being myself #if anyone is an ass on this post and doesn’t consider the context or nuance within i will kill :) #anywho thx ghost. that one’s been simmering for a but #a bit* whoopsies #once before i got dxed i was trying out a new therapist #and after an in-depth explanation of my fear around driving and the built up shame i had from still just having my permit #she told me to ‘just get in the car and drive’ #girl do you think i didn’t try that. my whole issue is that i can’t ‘just’ do it i was hoping we could work on the THREE MENTAL BLOCKS there #anyways i never went back to her. i still seethe a bit when i think abt it #anywho. sick and tired of being denied help and then chastised when i survive anyways #like yeah i’m alive. be a lot FUCKING better if you just gave me a hand though #but noooo because i’m not falling apart in front of you clearly i’m dramatic #tbf i have an incredibly high pain tolerance and have been an expert masker since i was a child #but still. not all disability is visible asshat. am i supposed to be able to function on my own or not why is there no right answer #anywho i’ve always felt a lot of connection to those with chronic fatigue #probs bc we both have deal with ‘it’s not that big a deal’ or ‘you’re being lazy/sensitive’ or ‘just suck it up’ #not to mention constant anxiety is EXHAUSTING. fight-or-flight takes up so much energy dude

[elitemeowmix]

Medical rant ahead because the “headache department” at my hospital is an absolute headache, an essay by Me

So I’ve been getting injections for daily migraines, and they’ve had some not great side effects:

godawful neuropathy/sensory issues.  If I wear certain pieces of clothing/come into contact with certain fabrics, it feels like my body is on fire/itching/just generally painful (and sometimes it even occurs when I’m not wearing anything, so that’s fun).  I’ve experienced this before because of my fibromyalgia, but never this frequently (it’s daily) and never at this severity (it’s absolutely intolerable, I feel like I need to peel off my skin).  So, understandably, my wardrobe has been dramatically reduced because most of my clothes (including all of my socks, except fuzzy bedtime socks, which is A Look™ in public lol) are having this effect.  One way it’s impacting me is that I can’t wear any gloves, and it’s about to be winter which means it’s hella cold out already, and my hands lose a lot of mobility in the cold so I use gloves at warmer temperatures than most people (yay fibromyalgia).  I’ve also become sensitive to my sheets/towels/blankets so that’s fun and not inconvenient at all *sarcasm*

I’ve also had a completely nonexistent libido.  Which, like, okay theoretically isn’t the worst side effect in the world. But (without going into all the details) this is very unusual for me -- I’ve literally never lost my sex drive no matter how stressed/depressed I’ve been, and only one oral birth control has ever even dampened my libido.  I’ve never had it be nonexistent.  Ever since I went through puberty, it’s been sky high and super distracting (e.g. an orgasm away keeps the distraction at bay).  So needless to say, I’m not feeling like myself at all, because I’ve known and dealt with my high-libido self since I was in 5th grade.  At first I thought this was due to a recent breakup, but it’s persisted way longer than I would have expected and at a severity that I’ve never experienced from any kind of stressful live event ever.  So it seems likely to be caused by the injections because A) the timeline matches up really well and B) it would be super unusual for my birth control to out of the blue randomly cause these symptoms, since I’ve been on this one for about a year and a half now and have never experienced this side effect.

I also get these weird stomach cramps that are worst during the first week after I get the injection, so I know it’s definitely connected.  I probably wouldn’t mind if that were the only issue with the injections, because I could probably just suck it up and deal.

although the injections have reduced the severity of my daily migraines, the beneficial effects have worn off increasingly sooner with each dose.  After only a handful of injections, this current dose lasted only two weeks before I was back to my baseline.  So it’s not like it’s eliminating my migraines, and now it’s not even working as long as it should.

SO.  I did the logical thing and messaged my neurologist explaining all of the above, with some more detail here and there.  And her response to me was:

the pain/sensory stuff if probably just an allergic reaction. (That was literally the extent of her response on this.  Just one single sentence.  Which is concerning for a number of reasons, the foremost being that if this were indeed an allergic reaction, shouldn’t you be telling your patient how to manage it?! Like “hey take some benadryl” or “stop the injections immediately” but apparently the welfare of her patients isn’t a concern to her I guess?)

the decreased sex drive isn’t related

GI issues aren’t uncommon

Let’s maybe schedule an appointment to talk about whether or not you should continue these injections

I was a little peeved because I felt like she’d just brushed off my concerns (she didn’t even address the fact that my quality of life was being compromised but nbd I guess), and I felt like she wasn’t listening to me.  But I figured she was just busy and wanted to get me an answer sooner, even if it was brusque.  So this was my response:

The sensory stuff could definitely be an allergic reaction, but it seems more likely to be an amplified version of what I was already experiencing with my fibromyalgia considering that I literally already experience that symptom.  Regardless, it’s causing an unsustainable way of life, so this needs to change @soon because I’m starting to get desperate, and I’m usually a pretty patient person about crappy side effects

Hi hello so I spoke on the phone with my Ob/Gyn, and based on my medical history and the evidence at hand (e.g. the timeline), we believe that this nonexistent libido is most likely caused by the injection.  Just to give you an update.

(stopped talking about it because meh)

So I got a text reminder asking me to confirm the shipment of my next injection.  Should I cancel it?  Or should I stay on it until my next appointment?

And, kids, this is where fit hit the shan, let me tell you.  Because her response.  God, I can’t.  The audacity.  This is what she decided was an appropriate response for a CARE provider to give:

(NO acknowledgement about the quality of life/issues caused by the sensory issues.  No compassion at all)

DIRECT QUOTE: “there is no evidence in all the studies that have been done, [sic] that shows [injection name] causes decreased libido”

(skipping the GI issues again)

Are the injections helping your migraines? (I LITERALLY ANSWERED THAT IN THE FIRST MESSAGE) Because my recommendation is to stay on them until our appointment in January, and at that time we can see if a change in medications would be beneficial.

There was a point in my life where a physician’s blatant disregard of my concerns would’ve hurt, but I’m apparently past that point.  I’m just angry. Like what do you mean, “IF a change in medications would beneficial”?!  Did you not read all the ways that this is impacting me?  Did you not read the part where I need something to change soon because this neuropathic pain is making me lose my mind?  Also, where the FORK is your compassion??  A patient is having really crappy side effects, and your best answer is “see you in January”?  REALLY?!  I would honestly cry if I weren’t so mad.

Also WTF was with “there’s no evidence about” your symptom that you’ve report.  SO passive aggressive wtf.  Like bitch do you really think my body gives a flying fuck about whether or not this symptom has been “established” as an Official Symptom of this (relatively new, btw) medication?  Because the last time I checked, my body does whatever it damn well pleases and doesn’t read the literature on what it’s “supposed” to do.  I’ve had side effects from medications that less than 1% of patients on those medications experience -- and if you actually bothered to read my patient file, MAYBE YOU WOULD HAVE REALIZED THAT.  Also, chronically ill bodies are often complicated??  That’s not a surprise to anyone, especially for illnesses that we don’t know a lot about, like fibromyalgia, which I have???  And NEWSFLASH EINSTEIN, individuals are *gasp* individual and - guess what - can have individual reactions to things!  What a WILD concept!  It’s almost like everyone has a unique genetic sequence.  OH WAIT.

And what really gets my goat is the fact that this is the first time she’s just blatantly ignored me/my patient history/my concerns.  At the very first visit, I told her that I had chronic fatigue.  We moved on to other topics and didn’t talk about the fatigue again.  But what did I see in the after-visit notes?  She literally wrote “fatigue appears to be from [Medication X].”  Well guess what JACKASS.  If you had BOTHERED to ask me if that were true/if I’d noticed a connection, I would’ve said absolutely no way in hell, because I started Medication X in May and I’ve been experiencing this bone-tired fatigue for YEARS (yes, years plural).  But guess what, even if you didn’t ask me that, you could’ve easily seen it in my patient profile!!  But apparently you’re an all-knowing God who is Always Right All the Time so who needs to ask patients questions or check patient histories!!

I cannot stand doctors with God complexes.  I have 0% tolerance for that.  I can’t handle these doctors who think that their MD somehow makes them Better Than You, and obviously they’re always the one who is correct, not you, because they’re the one with the degree so obviously your lived experiences are Just Plain Wrong.

If you are THAT arrogant and THAT uncompassioante (not a word but whatever), you should NOT be in a position where you’re dealing with patients’ wellbeing.  That’s not okay.  But of course, as long as we live in a society that sees becoming a doctor as prestigious/a money-maker, there are going to keep being doctors like this.  And I wish someone would just take them down a notch, because, dear god, would it kill them to actually listen to and take care of their patients???

Anywho.  That was LONG.

I hope to god no one read this entire thing, because if so, I apologize for that experience but also wow that’s serious dedication to this post (idk if I’d even read this whole thing lol).  I just needed to rant this entire thing and this is apparently my virtual diary.  And also having this all written down is going to be helpful for when my memory (inevitably) fails to remember all of these details

#tw asshole doctors #tw medical #so frustrated I could scream #like why are you even a doctor if you don't care about your patients #that shouldn't be a thing and yet here we are #growl #hiss #migraine injections #bad doctors #personal stuff #sorry for the rant