Being Disabled Is a Full-Time Job

Content/trigger warning: emetophobia, discussion of medical ableism and fatmisia, suicide, psych meds

Being Disabled means putting up with a truly unfathomable amount of bullshit, either from society, from your own bodymind, or both. (Note that I say “bodymind” because I have always thought separating the two was silly, and Disabled Twitter has provided me with a word that gets the connection between the two across.) Obviously the specific type of bullshit varies depending on a person’s disabilities, and I can’t speak for the entire Disabled community, but just for an example, I will go over a typical pre-pandemic day for me to demonstrate just how much work being Disabled is on a quotidian basis.

-I wake up. It takes me multiple alarms to get up because of my hypersomnia. I debate skipping work to sleep til 3 PM, but I’m too afraid of losing my job to do that, so I get up. I’m already exhausted.

-I take my antacid for my hiatal hernia-induced GERD and set an alarm for half an hour. I need coffee to function because of my hypersomnia, but if I drink it before the antacid has kicked in, I will be vomiting uncontrollably for hours. I make my coffee and put it in a travel mug for when the alarm goes off.

-I get dressed. I avoid looking at reflective surfaces because seeing my reflection when I’m particularly or fully undressed gives me horrible body dysmorphia. If my clothes are too tight, I also get body dysmorphia and have to change.

-I commute to work. My anxiety is so bad I can’t drive, so I don’t own a car; I take the El. I have to wear ear defenders or listen to music in order to deal with the noise from the other commuters. If I have to be squished in close with other commuters because the train is crowded, that puts me at risk of having a meltdown.

-I drink my coffee. Ahhhh. I use the coffee to wash down my psych meds.

-I arrive at work. The overly friendly security guard tries to make conversation. I try to reply with “small talk” even though it’s costing me dearly fuel-wise to try to figure out socially appropriate things to say.

-Morning meetings should help me plan my day, but I can’t focus during them. Sudden tasks come up without warning, putting me at risk of having a meltdown.

-I have so many meetings over the course of the day. I wish I could skip them to just do my actual fucking job, because I can’t focus during meetings anyway, but I can’t. Meetings also force me to engage in more small talk, which is exhausting and difficult.

-If I am having a bad brain day, especially if I forgot to take my meds, I have to talk myself out of leaving the office and walking into traffic. I first experienced suicidal ideation as a child, and my brain has spent so many years telling me that I want/deserve to die that I still experience those thoughts pretty regularly. I also have to talk myself into eating/convince myself that I deserve food, especially if I have had the misfortune of seeing my reflection that day.

-I also probably spend some of the day dissociated, and if I get startled or otherwise experience a trigger for one of my trauma-related disorders, I have to spend energy dealing with flashbacks or one of my protector alters trying to fuck shit up.

-I commute home. It’s pretty much the same as my commute to work, except I’m even more exhausted now and as such at higher risk of having a meltdown.

-I get home. I reheat some leftovers and maybe take a shower. Showering isn’t hard for me–I love showers–but I’m one of the few Disabled people I know who has an easy time with showering/bathing.

-I spend time with my wife and cat, then I fall asleep. I have to get at least 11-12 hours of sleep to be able to function the next day because my life is so exhausting.

See what I mean? That’s a lot of shit to deal with that wouldn’t even be on my radar if I were abled. Notice that I didn’t even include any chores like cooking, cleaning, or taking out the trash; that’s because I almost never have the fuel to do chores after such a long-ass day. This is why I’m always behind on chores.

And don’t get me started on all the shit I have to do in order to keep my health in its partially functional state. Actually, yes, get me started, because that’s what I’m writing about. I don’t have a PCP because I’m broke and scared of medical fatmisia and I don’t see enough specialists because I’m broke and can’t do phones…but if I were on top of my shit, I would be regularly seeing a PCP, a sleep specialist, and a GI specialist. As it is, I see a therapist and a psychiatrist, both of which require a ton of time, energy, and money. (Especially therapy; that shit is work, some of which needs to be done outside of my therapy sessions.) Staying on top of refilling my psych meds also takes time and money. If I did see all the specialists I should be seeing, I’d practically need a damn secretary to make all my appointments for me, if only because my Autisticness means I can rarely handle phone calls.

Also, when you’re Disabled, doctors often don’t know how to deal with you. A lot of Disabled people are fat and tend to get told “just lose weight” when we have health complaints. Not to mention if I did a Twitter poll of the chronically ill community asking if they had to explain their own illnesses to their doctors, I’d bet the poll would come back with an overabundance of “yes” answers, especially among people with “rare” (read: underdiagnosed) illnesses. When doctors don’t know our condition/s well, that means we have to do research. That’s a lot of time and energy spent on work that shouldn’t be our responsibility, but doctors rarely can admit when they don’t know things, and doing research is often key to Disabled patients’ being able to advocate for ourselves when our #DoctorsAreDickheads (thanks to Stevie Boebi for the hashtag).

There’s also the issue of medication. I’m lucky enough that I only take a few pills in the morning (and I also have an anxiety med to take as needed). Many Disabled people have delicate and complicated medication schedules that they have to keep track of. Sometimes this can involve going into a doctor’s office for a treatment; sometimes it involves having a pill reminder. Remembering to take medication and taking it can be a huge part of a Disabled person’s day.

I also want to emphasize that anyone who says “Well, just get on disability if being Disabled is a full-time job” is a towering pile of ableist shit-garbage at worst and ignorant at best. In many states, the percentage of people who apply for SSI or SSDI and get it is in the fucking twenties, and if you are approved, the process takes years and is extremely difficult, humiliating, and inaccessible.

I think that’s all I have for now. Thanks to my Patreon supporters: Ace, Hannah, Emily, Mackenzie, Sara, and Sydney! To be as cool as them, it’s only $1 a month to see blog entries two days early and to vote in polls to help me choose what topics to blog about.

I Made a Thing

Content/trigger warning: suicidal ideation mention

This is what my life is like.
All the Mental Illnesses

Image description: a Venn diagram of five mental illnesses: BPD, CPTSD, OSDD, depression, and anxiety. The mental illnesses’ circles contain the following:

BPD: Unstable sense of self
CPTSD: Flashbacks
OSDD: One step away from having alters
Depression: Suicidality
Anxiety: Everything is scary

The overlaps are as follows:

BPD and CPTSD: “My identity is trauma”
CPTSD and OSDD: “Trauma-related dissociation”
OSDD and depression: “What even is reality”
Depression and anxiety: “Trash executive function”
Anxiety and BPD: “Trust no one”
Anxiety, BPD, and CPTSD: “Hypervigilance on crack”
BPD, CPTSD, and OSDD: “What even is an identity”
CPTSD, OSDD, and depression: “What’s the point of living if I’m just a reaction to trauma?”
OSDD, depression, and anxiety: “I can’t do anything and am no one”
Depression, anxiety, and BPD: “Codependence despite unstable relationships”
Any overlap between four mental illnesses: “AAAAH”
Overlap of all five mental illnesses: “Fuck”

No quote today because this isn’t a real entry. I will take this opportunity, though, to say that I still really need help. If you value the labor I put into this blog, please consider donating. My PayPal button is in this entry: https://thisisforyoucarrie.wordpress.com/2017/08/21/too-out-of-spoons-for-titles/.  Also, you can support me by ordering from my Redbubble store: https://www.redbubble.com/people/autisticbanshee?ref=artist_title_name.

Too out of spoons for titles

Content/trigger warning: abuse mention, disordered eating, money, death mention, reclaimed slur, cursing

I’m tired. I’m so fucking tired.

For personal reasons I can’t go into right now, my CPTSD has been having a motherfucking field day. So much hypervigilance, so many nightmares, and even flashbacks, which my antipsychotic has failed to keep at bay. (Fortunately I’m going to see my prescriber in a few weeks and I’m going to ask him for a higher dose.) I have been feeling unsafe for about a week and my dissociative disorder was protecting me by presenting only particular facets of my identity. Now I’m coming back to myself and I really should be job-hunting and doing other productive things, but I need to take some time to re-integrate my personality. I’m still feeling kind of fractured. I have also slid down the slippery slope from purging after eating normal amounts to eating…I’m guessing something like 700 calories a day.

I also feel pathetic enough to ask for help.

I’m unemployed and living in an abusive situation. I’m trying to get a job that will pay for me to move out, but my mental health is really suffering, and it’s interfering with my job search. (Thank fuck for anxiolytics, which will probably get through me with an interview I have this week.) These entries often take a lot of emotional labor. If my work has helped you, or you are able and willing to help a Disabled writer a little, I’m adding a PayPal donate button to this blog. Well, actually, to this entry.

Also, here are some topics I’m planning on covering soon:

-changing language regarding disability (person-first language vs. identity-first language, why we–including me–should use the suffix “-misia” instead of “-phobia”)
-how to be a good ally to mentally ill people
-ableism in academia
-models of disability
-the ableism inherent in the idea of “the opioid epidemic” and how it’s really a war on chronic pain sufferers
-ableism and eugenics
-ableism in comedy

That’s it for now. No quote today because I don’t want to end up bawling because I had to look up something related to Carrie Fisher and be reminded that she’s gone. Yeah, I know, it’s fucked up to be so upset about the death of someone I never even met, but if you’re reading this, you should know I’m fucking crazy.

30 Days of Mental Illness Awareness Challenge

I should really do an entry on how mental illness “awareness” is usually useless inspiration porn. But I’m in the middle of a career change, which is keeping me pretty busy, so have the 30 Days of Mental Illness Awareness Challenge created by Marci of “Marci, Mental Health, and More”.

Day 1: What is/are your mental illness(es)? Explain it a little.

-MDD (major depressive disorder), characterized by low self-esteem (and self-hatred in my case), suicidal ideation, self-harm, sleep disturbances, false beliefs (e.g., my existence is a cosmic mistake), and low energy

-GAD (generalized anxiety disorder): constant excessive and irrational worrying about everything

-CPTSD (complex post-traumatic stress disorder): unstable sense of self/lack of sense of self/the personality is subsumed by reactions to trauma and the need to avoid further trauma, nightmares, flashbacks (may or may not involve full-blown reliving trauma; may just be flashbacks to feeling unsafe), dissociation, hypervigilance, tendency to view people and situations in black and white, tendency to idolize and cling to people I feel are “safe”/intense fear of abandonment by said people, rage in response to feeling unsafe/controlled, and chronic feelings of emptiness

-OsDD (otherwise specified dissociative disorder): trauma-related dissociation (best described as “my soul fucked off”) in response to stress

-BPD (borderline personality disorder): unstable sense of self, unstable interpersonal relationships, self-harm, self-hatred, splitting (black and white thinking)

…it’s a miracle I can do anything ever.

 

Day 2: How do you feel about your diagnosis?

What a weird question. Mostly I’m glad I’m properly diagnosed, so I’m aware of the shit my brain likes to pull and can as such address it properly.

 

Day 3: What treatment or coping skills are most effective for you?

EMDR. EMDR is my shit. It has done more for my flashbacks than any other form of treatment. This includes techniques I learned in EMDR such as grounding and going to my safe place. Also, cognitive behavioral therapy has been very helpful for my depression.

 

Day 4: What are the pros and cons of having a mental illness(es) or your specific illness(es)?

Being mentally ill turns you into a badass. You have to fight with your brain, sometimes daily, in order to get through the day. If you can do that and survive, you pretty much have to be a badass.

On the other hand, I have to fight with my brain over things that neurotypicals find easy, which leaves me exhausted at best, and at worst, there are things I’m unable to do or only able to do while suffering. Which does suck.

Oh, and saneism. That’s a real bitch and a half. Especially in the field where I work.

 

Day 5: Do you believe nature (biology/physiology), nurture (environment), a mix, or something else has an impact on mental health?

Wait, really? This is a question? Mental illness can come from nature, nurture, or a combination of both. That’s just a fact.

 

Day 6: Do you have a family history of mental illness or mental health issues?

Yes. I’m fairly sure I inherited a serotonin imbalance.

 

Day 7: Do you think there are any triggers or patterns to how your illness(es) effects you?

Yes. My depression and anxiety rear their ugly heads when I’m already under a lot of stress, especially when I’m having interpersonal struggles or I’m feeling a lot of impostor syndrome. My CPTSD symptoms show up when I am reminded of the person who caused it. That means I have some pretty weird triggers, unfortunately.

 

Day 8: What age you were diagnosed at? At what age do you think your symptoms began? (You can make a timeline)

TW: suicide, self-injury

I learned what suicide was when I was ten, and I found the idea of it comforting. I’ve never been afraid of death. I think that was when I first told my parents that I felt like I wasn’t in control of my life and that I wasn’t happy. I started self-harming about a year later. So I think my serotonin imbalance started kicking my ass right around puberty.

I was diagnosed with major depressive disorder at 19 when I ended up in the psych ward due to suicidal ideation. My next diagnosis was borderline, at 22. After that, I was diagnosed as Autistic and with GAD and CPTSD at 23, then I was diagnosed with OsDD at 26.

 

Day 9: What are some of the important events in your life, that may have effected your mental illness(es) for the worse or better? (You can make a timeline)

There are too many events that affected my brain for the worse. Complex PTSD comes from repeated trauma.

I spent four days in the psychiatric unit of a hospital once. That got me on medication and helped affirm that my problems were real and I wasn’t just “throwing pity parties” or being overdramatic.

 

Day 10: What is the best thing in regards to your mental illness(es)?

I’ve learned a lot about myself and how my brain works. And I have really made some great breakthroughs with my mental health that made me…realize how strong I can actually be. See my earlier note about how being mentally ill makes you a badass.

 

Day 11: What is the worst thing in regard to your mental illness(es)?

TW: suicidal ideation

The near-constant need to tell myself I deserve to live kinda sucks. And ugh so do the flashbacks. It’s a tough call.

 

Day 12: What do you think about your diagnosis in general? (Some ideas are: stereotypes, commonalities, misdiagnosis, over diagnosis)

Content/TW: self-injury discussion

Ohhhhhh boy. Let’s go over the diagnoses one by one, in chronological order of diagnosis:

-MDD (major depressive disorder): Oh man I’m such a stereotype here. I’m a white woman with a socioeconomically privileged upbringing who self-harmed in high school. While we’re talking about stereotypes, I’d like to debunk some. I like debunking stereotypes. Self-injury does not just take the form of white women cutting their wrists. It can be depriving yourself of something you enjoy, triggering yourself, restricting food intake or purging, exercising past what you know you can handle, or any other number of things. People of genders other than “female” can self-harm.

-CPTSD (complex post-traumatic stress disorder): More stereotype debunking! You don’t have to be a veteran to have PTSD! Also, there’s a difference between CPTSD and PTSD. Many differences, actually, but the main one is that CPTSD is caused by repeated, similar traumas and PTSD is (usually) caused by one event. CPTSD flashbacks can also be different; they can involve reliving only the feeling of being in danger or out of control, instead of the full-blast reliving-the-memory-in-its-entirety flashbacks you see in movies. I’ve had flashbacks I didn’t know were flashbacks until later.

-BPD (borderline personality disorder): Borderline people are not any more manipulative, selfish, or abusive than neurotypicals. Personality disorders do not inherently make people abusive. I REPEAT, PERSONALITY DISORDERS DO NOT INHERENTLY MAKE PEOPLE ABUSIVE. If you disagree with this, stay a good distance away from my fists, or they may collide with your face.

-GAD (generalized anxiety disorder): Yes, anxiety is an actual mental illness that can be very debilitating. No, it isn’t just being nervous about stuff. No, it can’t be overcome with kale and yoga. If someone with anxiety says they can’t do something because of they’re anxiety, they’re not overreacting or being too sensitive, and if you push them to do it anyway, you’re being a cockwaffle.

-OsDD (otherwise specified dissociative disorder): This is more of a side effect of CPTSD than its own thing, hence the label “otherwise specified”. Um…hmm…oh, here’s a misconception I can debunk. Not all dissociative disorders are dissociative identity disorder. I dissociate when I feel threatened, but I don’t have alters.

“Mara, you forgot autism!” you might say. No, I didn’t. That’s not a mental illness, it’s a neurodevelopmental disability. And good thing too, because if you got me going about autism and stereotypes, I’d type out a post longer than my grad thesis.

 

Day 13: If you know the criteria of your illness(es) which ones do you think you meet? Or what are your most common symptoms?

Well, this is gonna take a while.

Major depressive disorder:
-depressed mood: yes
-loss of interest in usually fun things: not really
-suicidal ideation: yes, often; probably my most common symptom
-self-harm: yes, from age 13-19
-sleep disturbances: kind of

Generalized anxiety disorder:
-fatigue: eh, kind of
-nausea: yes
-stomach upset: yes
-body aches: sometimes
-insomnia: no
-inability to control anxiety: I’m gonna say yes

Complex post-traumatic stress disorder:
-“classic” flashbacks: yes
-emotional flashbacks: yes
-nightmares: yes
-hypervigilance: yes
-lack of sense of self: yes

Otherwise specified dissociative disorder:
-alters: no
-dissociative trance: I’m in one now
-identity disturbance: yes
-depersonalization/derealization: sometimes, usually depersonalization more than derealization

Borderline personality disorder:
-impulsive behaviors: thoughts, yes; behaviors, no
-substance abuse: no
-unstable sense of self: yes
-unstable interpersonal relationships: kind of?
-splitting: ohhhhhh yeah; probably my most common symptom after suicidal ideation
-“favorite person” attachments: yep
-self-sabotage: sometimes
-self-harm: we’ve been over this
-being constantly convinced that everyone I love hates me: and here we have another super common symptom

 

Day 14: Have you ever experienced stigma?

“Stigma” is a manifestation of saneism and, more broadly, ableism. I feel like that’s important to mention when talking about stigma against mental illness.

And yeah. Yeah, I’ve experienced it. Every time I hear some fucker calling immoral behavior “cr*zy”, it feels like I’ve been fucking stabbed. Need I say more? Actually, I could, but I won’t. It’s been bad and I don’t feel like talking about it right now. Maybe in a later entry.

 

Day 15: How has your life been effected by your illness(es)? (Some ideas are: relationships, career, school)

TW: mention of suicide

My illnesses damn near ended my life. Or at least, they made me come pretty close to ending it. They also seriously affected my attendance in college and grad school, and they’re kicking my ass so hard now that I’m seriously considering (read: desperately aching to do so) leaving my chosen career for something less flagrantly inaccessible.

 

Day 16: How many people are you “out” to with your mental illness(es)? Why?

I’m out to basically everyone because I’m naturally open about mental illness. And it’s kind of hard to combat saneism while hiding that one isn’t sane.

 

Day 17: If you could get rid of your mental illness(es) would you? Why or why not?

I wouldn’t get rid of the BPD because it’s an inherent part of who I am. I wouldn’t want to change who I am. The others can fuck right off, especially the ridiculously inconvenient CPTSD.

Although that brings up an interesting quandary, come to think of it. I wouldn’t be who I am without the trauma I experienced, and CPTSD means a huge part of who I am is a reaction to trauma. But I’ve accepted that. I amend my statement: in terms of the CPTSD, my personality can stay the way it is, but the flashbacks, hypervigilance, and nightmares can fuck right off. So can the anxiety, depression, and dissociative disorder.

 

Day 18: What do you wish people would understand in regards to mental illness and/or mental health?

I could write an essay longer than my grad thesis on this topic. I’ll just make a list of my top 10:

  • When a mentally ill person says their illness is keeping them from doing something, they are being truthful. They are not being “lazy” because their disability is not immediately visible. (Not that physically Disabled people don’t get called lazy too, but you get my meaning)
  • Yoga/kale/acupuncture/exercise/acai berries/nature walks will not cure a mental illness. Full stop.
  • Medication isn’t right for every MI person.
  • Therapy isn’t right for every MI person.
  • It should be more acceptable for MI people to not seek treatment. The medical-industrial complex is ableist and violent. That I choose to make use of it doesn’t mean all MI people should. Also, there are a lot of shitty therapists out there. Trust me. I’ve had plenty, and heard horror stories. Try finding a good therapist while being queer outside a liberal metropolitan area. Go ahead. I’ll wait.
  • Mental illnesses often have measurable and statistically significant effects on the brain. On one hand, this demonstrates that mental illnesses are valid…and on the other hand, rights and respect should be granted to MI people regardless of what an fMRI shows.
  • Personality disorders don’t make a person abusive. Don’t “what about ASPD” me. No diagnosis means a person will become abusive.
  • No mental illness makes a person violent.
  • Functioning labels are used to deny agency to “low-functioning” people and legitimacy to “high-functioning” people. I see this all the time with autism and now I’m seeing it with mental illnesses, especially anxiety. Can we not?
  • Instead of flat discouraging unhealthy coping mechanisms, healthier alternatives should be offered. That’s more helpful.

 

Day 19: Have you ever read a self-help book or a book related to psychology? What is your opinion on them? If you have read them do you have a favorite?

Self-help books. Ohhhhhh boy, that’s a lot to unpack.

If it’s written about a particular disorder and it’s not by someone with that disorder, I don’t trust it. If it’s about a personality disorder or other “scary” disorder and it’s not by someone with that disorder, I REALLY don’t trust it. The only exception to this is The Body Keeps the Score by Bessel van der Kolk, which was recommended to me by one of my few therapists who wasn’t shit.

Why am I like this? Because mentally ill people are the real experts on our conditions. I’m not saying neurotypical psych professionals can’t have helpful insights and ideas, but damn have they given me no reason to trust them as a group.

 

Day 20: Where do you get your support?

My friends! And the awesome woman I’m dating. I have an excellent support system. Unfortunately, no family members are in it, but I deal.

 

Day 21: Many people say stress triggers symptoms, do you agree or disagree?

…seriously? Of course stress triggers symptoms. What the hell kind of question is this?

 

Day 22: What is your opinion on medication used to treat mental illness(es)?

I think it’s an excellent tool that helps many people and saves lives, but that it isn’t necessarily right for every mentally ill person.

 

Day 23: What is your opinion on therapy?

I recognize that the medical-industrial complex is ableist and violent, and sadly, that can bleed into therapy, especially when it comes to involuntary commitment *shudder*. Also, there are a lot of shitty therapists out there; neurotypicals who went into psychology because they find mental illness ~fascinating tend to make terrifyingly bad therapists. It can also be terrifically hard to find an intersectional therapist; I could tell horror stories about therapists who were shitty about my sexual orientation. And heaven knows that more MI therapists need to exist, because the real experts on mental illness are MI people. Still, I think that therapy is a good idea in general and that many MI people can benefit from the right form of therapy. Often one can go through multiple therapists or types of therapy before finding the right one, and I feel like many people don’t understand that. Some people think the therapist/patient dynamic is always toxic and abusive, and I wonder what life is like on their planet.

 

Day 24: What is your opinion on alternative treatments or treatments that aren’t commonly used? (Some examples are: EMDR, hypnotherapy, herbal or vitamin supplements, acupuncture, massage therapy, art, music, or recreational therapy, ECT, VNS, TMS, DBS)

Okay, this list puzzles me. There’s total pseudoscience in there with techniques that have a legitimate scientific basis. Being a scientist, I think that people are welcome to seek “alternative” treatments if they really like the placebo effect that much, and as for less common but scientifically backed techniques (like EMDR, which has done wonders for my CPTSD), well…they’re right for some people and wrong for many.

 

Day 25: What is your opinion on forced/coercion in mental health treatment? Can be legal (law enforcement or psychiatric holds) or a “helping” friend/family member.

It should be considered a civil rights violation.

 

Day 26: How is your day-to-day life effected by your mental illness(es)?

Well, right now I hate my job so much I’m fighting off suicidal thoughts every day, so that’s annoying. Usually the only mental illness of mine that has a profound effect on me is the CPTSD, and only when it’s triggered (usually by someone yelling at me or getting me in trouble).

 

Day 27: Explain a “good” day.

Um…I don’t have any symptoms, I guess? I don’t think I understand this prompt.

 

Day 28: Explain a “bad” day.

There are plenty of ways I could have a bad brain day. The most common one would be that my CPTSD is having such a field day that I can’t go to work because I will definitely be triggered or because I’m dissociated and having trouble grounding myself.

 

Day 29: What are a few of your goals regarding your mental health?

TW: suicide mention

The main one is to die by something other than suicide. I don’t have any other particularly concrete goals with mental health.

 

Day 30: What does recovery mean to you?

I don’t think being fully cured is ever possible, so not that. Recovery for me would mean no more flashbacks or dissociation, or at least being able to deal with them promptly if they happen. I also don’t think I’ll ever be free of suicidal thoughts, but I am in a good place regarding how I deal with them.

 

Carrie Fisher quote of the day: “I really love the Internet. They say chat rooms are the trailer park of the Internet, but I find it amazing.” I know, not mental illness related, but this is a blog on the Internet.