What is being immunocompromised like? In a time where there are many viruses outside my home it makes me fear leaving the house. Not only because of the symptoms caused by MCAS but also because of the symptoms caused by having a weakened immune system. There are real dangers lurking outside my safety bubble.
There is an anger which seeps into my mind while facing the world alone from inside my home. Anger of the frustration of not having been seen over the course of the pandemic, voices from the outside world trying to convince me how Covid19 is over. When in actuality it is still a real threat to people like me. The furiousness of feeling as though I do not matter in the main stream because I am unseen, or unheard because voices like mine are rarely amplified. When on the news they would say the people dying of Covid19 were like me. It created a disconnected between myself and those health privilege around me. Not because I do not want to be connected but because my feelings, my life experience is being neglected and ignored.
People have told me they caught Covid19 and it wasn’t so bad for them, well, if they aren’t immunocompromised perhaps it wouldn’t be so bad. Although I have heard how healthy people have even succumbed to Covid19 so there are two sides to this preverbal coin. There are other things being reported in the news, but the numbers are still there. Vast amounts of germs, bacteria and viruses linger in the air outside of my door. The flu is out there, as is the respiratory virus which is aiding in a health care crisis.
Legitimate fears being ignored by those we hold dear, hurts. I find myself at odds with some people in my life because of their view on the situation or their stand point on it. I do not expect everyone to isolate to protect themselves, but some people do need to realize people like me may not have the same privileges they do. It has been years for me since I left my home without a mask, years since I had a friend visit.
Isolation brings loneliness and that loneliness drives one into the darkness of depression. I have sat with uncomfortable thoughts about my life and how the pandemic and being immunocompromised has affected my life. But I am still trying to live, I am chasing my dreams, I am making art, I escape the pain in my body and mind through creative endeavors. All the while, I am lonely, I miss human connection and interaction. I may want visitors, but is it safe? Will someone truly be able to keep me safe from a potential cold or flu they maybe carrying? I sit here, I wait in this bubble of hope and disparity waiting for the day I will feel welcomed into the fold of society.
Lately I have been stuck trying to write but something is getting in the way. Is it the brain fog, is it the exhaustion I am facing making a documentary? I feel a little stunted and I am not sure why. I have struggled to find words to write down for the purpose of short story writing with my twitch community and I am keep coming up empty handed. Writers block is a terribly frustrating mind set to be in.
During this time of not being able to come up with the words for shorts, or my documentary I have found myself in a place where I am actively listening more to others. I have discovered I want to work on rewiring my brain and perhaps through some brain training I will find my grove by also discover the possibilities within this project.
Perhaps there is this deterrent from writing because of the way I am feeling, I am writing this right now, but it is more about writing about not being able to write for the purpose of the documentary. This process of making my first documentary is teaching me how the writing process for it is vastly different then writing a short film script. When I sit down to write a script I plot out the whole story on what is called a beat sheet (a general outline of the film). I did a beat sheet for my documentary but I am finding that the story is changing. The initial points I wanted to discuss have reseeded into the distance and there are new stories emerging, this change means I must allow the film to take shape in the way it is meant to.
Documentaries change, we may have a plan but the film and its message may shift depending on what is filmed. Perhaps my writers block is because of my resistance to this process. I must allow myself to go with the flow of the film, allow it to carry me to the points I want to show and share that with the audience.
Nothing is built in a day especially in film. Film is a media that takes a long time because of the multiple shots and cuts. The amount of A roll and B roll that need to go and where they need to go, the organization of the media after it is shot. Not shooting shots in order is also affecting my brains organization, but as a gardener (a term in film for someone who doesn’t write in order) it does help me to pick out scenes I want in the film.
There is still much to learn and I aim to do my best for the this documentary and hope to continue to work in film as I am enjoying the process. While there are struggles with it, I wouldn’t change this opportunity for the world. I am grateful and blessed to be in this position and I do hope to bring awareness and hope to others. Life with illness is a chance to live life, there are things to learn and explore and illness can refine us if we let it.
Thank you for being here, I haven’t posted in a while I get lost in working on many projects and find I have much on the go. I will do my best to write when I can.
If you haven’t done so please come on over to youtube and check out my videos on there.
Boris Levenzon sent me a question this last week: “I wonder if you care to talk about dealing with abandonment, friends, spouses, etc. I guess it touches on caretakers burnout as well. And how you said that anger and resentment are toxic, but how do you deal with not hating or resting the ones that left you in your life?”
Boris, this is a great question, and I appreciate you sending me this to give you a written response. This may sound crass and harsh, but I treat these people as people who have died. Resenting the dead is hurtful, so I just let them go and view them as if they are non existent anymore. In a way, the friendship or relationship has died. Through death, we can find closure; while the person may still be living, they may never contact us again and may never recognize their wrongdoing. Forgiving, letting go, and not concerning myself with anything that involves them anymore. I unfollow them on social media and block them if needed.
Yes, people have hurt me; many people use their anger towards me because of their caretaker’s burnout as an excuse to abuse and hurt me, and it is toxic; it destroys relationships. People who go into caretakers burn out and do not get the appropriate help will, in turn, bring a relationship to a close through their own toxic stubbornness.
People who do this lose out on the unique strength, care, and understanding we have to offer. Illness has a refining effect. It helps us to change our perspective on life and brings us to a place of learning where we see the isolation of disease and how we can be there for ourselves. It increases our capacity for coping.
If people do not want to stay in our lives, there is nothing we can do to make them. Interactions are based on free will, and if someone no longer wants to interact with us, they will not. There is nothing we can do or say to change how people feel about things. Humans are cruel, mean, and selfish, and through illness, I found that people do not want to help shoulder the burden of what someone is carrying, but many times, they want me to support them in their hardships because I am strong. If people can not be there for me, I will not offer my support; support is a two-way street. I am tired of one-way streets where I care, I am there for them, and when I am down and need someone, I am blown off. Why hold onto a one-sided relationship at all? Why hold onto people who treat you like convenience? I have met some genuinely caring individuals who are also chronically ill because they understand the hurt and isolation that come along with it.
I wanted closure myself; I wanted to be able to hear why they treated me poorly. People in my life are still treating me poorly, projecting their anger on me, and continuing to hurt me. Lying to me, they will get the help they need and truly not doing what they promised they would do. I will never get the answers I seek. People are too absorbed in themselves and their pain and too busy to see through their shit to help someone else or be there for someone else; it comes down to people being unequipped in coping. People do not admit their faults and weaknesses and thus project their toxicity onto others. They are blaming a chronically ill person because they are too egotistical to admit their wrongdoing.
I am at a point in my life where I do not put myself in a situation to be there for someone if they are not capable of being there for me. I am not wasting my precious energy on trial arguments and others’ inability to control their anger. It takes an unkind and hateful person to project their anger onto someone who has been isolated. Blaming the sick person when the fault of the abusive person is seeded in their ego. Their stubbornness and their inability to want to change or heal.
In every relationship, there must be a give and take. There has to be an understanding, and there has to be respect; a mutually beneficial thing happens in relationships when one person comes to the other person expressing hurt; the other person takes accountability for it and works to change. People who apologize and continue the same behavior are abusive and do not want to change. If there is no give and take, the relationship becomes one-sided and fruitless.
People fall into caretaker burnout because they stop caring for themselves; they stop giving a shit about the things they love and want to do. Through doing this, they resent the chronically ill person blaming them for what is happening instead of being an adult, taking responsibility for their choices, and putting their lives on hold. Lack of balance in anything causes distress. People who are burnt-out caretakers focus on trying to care for someone but do not care for themselves; if you can not take care of yourself, you can not take care of someone else, and you will become abusive.
A problem in today’s world is people want other people to fix their problems or accommodate their toxic behavior. If people do not want to heal themselves and want others to fix them, this creates a vacuum where people expect others to clean up their messes. We aren’t children; we are adults who clean up after themselves. The same thing goes for our emotional state and the way we behave. Throwing temper tantrums and being unkind to people to get your way is childish behavior. Please pick up your britches like a big person and do what you must to learn to cope with life like the rest of us. Your mental state is your responsibility, no matter who you are, and learning to be a better human should be what we all strive for. Lifting each other up and encouraging each other is far kinder than trying to squish the life out of one another.
I have had a lot of time to myself and a lot of time to think and reflect and deconstruct my thoughts. I guess that is why I have been able to take things I believe and contextualize them into something like writing. Isolation has been a blessing for me to be able to write. While it has been a while, I do my best to write when I can. There is much we can share with the world on how to cope and live life, for example, if we are given the opportunity. Our insight is different from the health privileged for a reason.
Where does this feeling of inadequacy come from? Why do we need to try to prove ourselves and our worth to others? These two questions are things I have struggled with greatly as of late.
I find myself wondering why is that no one in my family reads my writing. Do they not care, or do I genuinely lack talent in writing? I am not the most prolific writer, but I write with an open heart and mind. I hope those closest to me take an interest in my work. But they do not. Are they too caught up in their world, or is it because they view me as inadequate?
Disabled is a word that strikes hearts to make them birth forth an ableist tone. I keep hearing from people it isn’t the right time to talk about ableism; there is too much going on in the world. There will never be a right time if we keep not talking about it and sweeping disabled lives under the rug. Something that has continued to happen through the decades because of this collective perspective of ableism ingrained into society. The idea of looking down on people with disabilities is nothing new, but because some of the disabled are unable to articulate works to speak out does not mean the abuse and ableist discrimination aren’t happening to them.
Ableist language is all throughout society people using “triggered” to express their emotions when not living with triggers is the appropriation of CPTSD/PTSD. Calling someone bipolar, psycho, or schizophrenic because of their actions appropriates mental illness and ableist. This need to label people for expression is regressive, not progressive, and isolates people living with mental health conditions.
When will films include disabled people with actual conditions? When will films be written by disabled people from our perspective? Why is it that disabled appropriate actions are, ok? It is not ok; disabled stories should be told from a disabled perspective because we view illness and disabilities from a less ableist lens, and we see them for what they are. I am sick of seeing a disabled life represented in games, comics, literature, films, and any form of media as a negative existence.
I am calling you out, society; you are ableist. Check yourself and update your perspective. I am disabled, I have a chronic illness, I live with mental health issues, and I am still able to write this blog; I am making a documentary, and I will not quit or be quiet to make an ableist comfortable. I will make you uncomfortable because only in that discomfort can change happen.
When I wrote in my journal when I was younger, I would note the song I was listening to. Did anyone else do that? In journals, I would write down the music I was listening to, so if I looked back on that moment in time by reading it, I would know how I was feeling by listening to it.
I miss those posts or feel like I’m writing in a journal. When you think about it, blogs are like a journal for others to read. Now whether the people in my life that are close to me read my writing is a whole other story. I know a few do, and I appreciate you taking the time to read what I write, being introverted makes it easier for me to write things down than say them out loud. Which sometimes makes me feel like not good at my writing which creates that little whisper of doubt. But I don’t want to let that stop me from doing something I enjoy. So I will keep doing this blog and try to upload it when I can.
I have talked a bit about living while being stuck inside most of the time. And cosplaying was something I used to enjoy when I was able to be out more. I got depressed and stopped cosplaying; I stopped streaming and making content. I want to do more to help myself to get to a better state of mind; cosplaying and live streaming enabled me to do that.
Cosplaying isn’t about escaping who I am; it’s emulating characters that evoke emotion and terrify people; they make people happy, bring them joy, and laugh. Having that capacity within myself to make myself a living art piece of someone else’s creation feels cool. I may not be able to go to conventions and hang out in big crowds, but I can Cosplay from home.
While many can mill about the outside world, the growing fear of things outside my home lingers within me. Fear of what waits outside drives me into anxious thoughts, and the fear of leaving home maskless is something I can not fathom for myself now.
I decided to do a cosplay every day for Horror Month/Halloween month this year. I am streaming every day on Twitch this month and am so excited for the release of Scorn, a horror FPS inspired by an artist I love, H.R. Giger; the game comes out on the 14th, and I am streaming it on Twitch.
I may be bubbled and have not had a friend visit me inside my bubble for almost three years, but I am doing what I can with what I have. I have a community that supports me and is there for me. They do not judge me for being sick; I appreciate them because they are like family to me. I will continue to cosplay and continue to play games to keep myself connected to others. The internet is truly a blessing.
My name on Twitch and youtube is VillainAri; this is because many times, people who are disabled or chronically ill are villainized in media. For example, if we look at the cinema, it is usually someone with some disability that is the murderous killer in horror. Even in the superhero genre, we see characters who are missing something in the realms of abled-bodied people that becomes jealous and thus turns into a villain. As an advocate and activist against ableism, I have also been villainized for this, making people look at society’s wrongs and uncomfortable. I wanted to explain the meaning behind my name. Some people have believed VillainAri is my name because of the horror genre, but in fact, is because of the villainization of the other. For context, othering is when people treat people as though they are alien, and as disabled and chronically ill people, we are often othered.
Thank you for reading my blog. I hope you have a wonderful day, and that joy finds you in an unexpected way. Please note I am a mature content channel 18+ as I sometimes play scary games; I play Overwatch or Fortnite. https://www.twitch.tv/villainari
While the world is tired of hearing news about Covid19 there is still this aggressiveness towards people who are choosing to wear masks. Seeing artwork by artists online expressing how they feel verbally harassed by people because of the uncomfortable memories around Covid19 masks seem to remind others of. Where I live the pandemic isn’t over, there are still people being hospitalized because of Covid19.
For me masks have protected me, I do not have all my lymph nodes I had a bunch removed because of cancer, when I get sick with the common cold it knocks me down harder than most and tends to obstruct my breathing. I wear a mask to protect myself. I understand the anxieties of masks reminding the world of illness, but diseases are kind of here to stay. Rare complex illnesses, mental health illness, chronic illnesses, cancer, disease is a part of the human condition. That being said, losing one’s temper on someone because it isn’t something you want to do isn’t a kind or understanding approach, it is closed minded and downright childish.
There have been so many times in the last few years I have wanted to stop taking my meds. It isn’t because I don’t want to live, it is because I am tired of having to swallow the pills over and over. The routine of the countless amounts of pills. I don’t go onto other people’s pages and leave nasty comments because I don’t want to take my pills all the time. I make myself take my pills to stop the swelling of MCAS, I take pills because I am missing my parathyroid and thyroid, I take pills to make me move and live. But if I simply ripped a strip off of others because they are doing something I didn’t want to do I would be projecting my own issues onto them.
Part of me hates the pills because they remind me, I am sick, and another part of me knows if I stop taking them the consequences of high blood pressure and anaphylactic shock will be inevitable. By not taking the pills I would land myself in the ER more than I want to be, because honestly, I don’t want to be in the ER at all if I can help it. So, I get up I take the pills, I inject myself when I am struggling to breath because my tongue has erupted in hives. Being sick doesn’t mean I should give up on life and what I want to do. Being sick is a speed bump along the way in life. It may be a mountain of one at times but giving up and giving into the projection of others isn’t something I am willing to do. I suffer when I do not wear a mask, and I suffer when I do not take my meds.
It has been hard to find a balance at times, the sleepless nights caused by random adrenaline dumps keep me awake, hyperPOTS is a terrible thing, but I find something to busy myself in these moments. Laying down in my bed writing a blog post as I am now. There are simple pleasures in life to be grateful for. While I was not wanting to get the Covid19 vaccine, I had to, because of how my body responses to infections. I needed to be protected because other people won’t protect me. I will wear a mask long after Covid19 is, because fragrance and scented products do me harm.
I remind myself every day when my alarm goes off for my meds, I must take my pills. I must do what I can to safeguard the life I have. Yes, pills have side effects, all of them do, however, the effects of me not taking them all will land me in the ER. Being sick is a trail of patience with ourselves at times thus why it is vital to set time aside for you to do the things you love. I love writing, and I hope to do more of it on here soon. I am working on writing books and implementing the edits into the finished ones. I love to draw and create and to do those things I need to take my meds to be in the best state to function for myself.
Life in the bubble is a documentary that is being made possible by Storyhive and Telus. I have been granted an amazing opportunity to share what it is like to live a bubble life. As someone who lives with my sock to life outside of my bubble is scary. And I feel like it’s time to tell all.
People like me don’t live “a normal life” we adjust to different kind of normal. A life living with limitations. We still live. We just don’t live like everyone else.
Life in the bubble is challenging. My life is constantly advocating for myself. While I would love to tell people that it gets easier, it doesn’t. Life with illness is a challenge in itself and when you are stuck inside most of the time it should make it more difficult and disheartening at times. I have struggled with many aspects of my illness and many of the struggles I have done alone. Advocating never stops and it’s something that I have to continue to do. It is perpetuated by rare disease complex illness and a life lived separate from most of society.
I am excited to share the journey with you whether it is just a glimpse into some of the things I live with and talking with others and what they experience. The rareness and complexity of the illness is something that needs to be known. As someone who has had to change my life drastically and bubbled myself so to speak I have learned different ways of coping and finding things to do to keep my joy for life alive.
I find it interesting that at the beginning of the COVID-19 pandemic how many people were having such a hard time staying indoors, perhaps it’s my introverted Ness which made it a little easier, at times I did find myself to get rather depressed. However overtime being alone I noticed I had time to write my book. I wrote a book about the things that I live with about the things that I faced which aren’t just diseases. I’ve written countless short stories, poetry, working on Scripps. I’m drawing much more regularly than I ever have before. If anything the COVID-19 pandemic sparked a creative fire within me. Thus I decided to apply to the Storyhive All Access Documentary Edition.
When my friend sent me the link to apply I looked at it and I got teary-eyed I wanted it so badly. I wanted to be seen and heard and I wanted others like me to feel the same. Even if I can’t reach out to them or find them I know there’s other people like me out there. We may be fewer and far between but we matter so do our stories. Us sharing what we’ve been through is of vital importance. While connecting with other people who have mast cell activation is difficult to say the least, I hope to show the struggles of the illness to the best of my capacity. I also want people to see what it’s like to live. Not give up, not give into the illness that tries to beat you down it tries to steal your humanity. Life and illness is still life worth living.
As the creative juices get flowing and I start thinking more about the documentary and honing in on one of my diseases I wanna share as much as I can information wise and experience wise. if my friend never would’ve sent me that application I wouldn’t be where I am at now. There’s a lot of work to be done and I was definitely overwhelmed after the first two meetings. However, I now feel like my thoughts are beginning to organize a little better and perhaps it’s because my pain is managed better today, I remain hopeful and vigilant with working on this. I am immensely grateful, I feel blessed for this opportunity and I’m going to do everything in my power to make it to the best of my abilities. It is my first film, and I’m hoping that is the first form of money. I can already see other ideas formulating and percolating within me for awareness purposes and reaching out to other people in the community of rare disease.
I have always been an activist, and an advocate for as long as I can remember. I did have some time where I needed to get some major therapy to work through some issues after my divorce but I am much better now at least mentally. My mentality has help me get to this point where I feel I have the capacity to help others again. And of all I can do with this film is show people what it’s like, and explain to others how to not give up and how to continue moving forward while being sick. I will feel like I’ve done my job. Our hardships can become a offshoot for other people to find healing and hope to get to that place of acceptance. While the road to acceptance is hard long and challenging I wouldn’t change it for anything. I want to help others get to where I’m at, because they deserve it, just as everyone deserves love and respect, everyone deserves to be heard and to live their life.
I am excited for the future. I am excited for this documentary. I’m excited to connect with new people form new connections and I hope to make a positive impact on other peoples lives.
Thank you for taking the time to read my blog post. I know that I had been tardy and I hadn’t posted a lot as of late. With a lot of medical things and stress in life getting in the way I felt like I was drowning for a bit. But I feel like I’m getting back on my feet again and I feel like I’m ready for this chapter. I’m excited to see where this goes and I’m excited to share this journey with you as I document my journey with my documentary. Whether I write it out here on my blog or if I write it all in a book I think documenting the process will help me in the future to recall the things that I need to do to have a place for making another film. I am a visual and audio learner, The process of me writing things down and also hearing me read it out to myself at the same time will help me to remember things to the best of my ability and I think this is the chance I have been waiting for for over a decade.
What is chronic illness like, it is always feeling under the weather. I never feel 100%, this is reality for me. Somedays I can hardly eat, others I feel like I am running on empty from the moment I open my eyes. I feel sick all of the time, there isn’t a day where I have no symptoms. I simply choose to not express myself, mostly this is due to the comfort of others. I wish to not share it with others as I hear the same thing time and time again, “isn’t there more to you then illness?” “Why are you talking about this again?” “I thought you would at least have something positive to say.”
Reality check – I battle my body daily, I take thirty plus pills, injectables, have hydration lines put in to deal with chronic dehydration, I drink boost more then I actually eat, and sometimes if I am lucky the pain meds I am on actually work. Reality is I am sick, I shouldn’t have to feel the need to change myself to be around people. Yet, the discomfort others express makes me uncomfortable and thus I feel the need to conform to normalcy which alludes me. It comforts others to see me acting “normal” and by normal I mean hiding my illness. And on days where I can not hide it, I hide myself away from others. Should they see how truly unwell I am, I fear they will leave.
When the subject is broached I feel nervous, and unsure. What will people say, what will they do when I am sick. I recall may times being in the hospital, and no one coming to see me, being alone, isolated for my safety. Yet, no visitors came through the door. I recall after my stroke one friend coming to visit me, and I felt like they cared. I have noticed those whom have been around illness and seen the turmoil it causes are the ones who truly see me for who I am. A women stuffed to the brim with glittery pills of life, an artist, a friend, a content creator, a dreamer. They do not just lump me into a single slot with everyone else who is sick. They see me, not the illusion of me. The real me, every facet. These people are rare, the ones who will show up with a yellow rose for you when you are locked away in the Cardiac ICU.
It is frustrating the level of medical of gaslighting I encounter. The countless arguments which ensue due to the lack of belief around the rare complex illnesses that are slowly wrecking my body. I have heard others with rare complex illness joke about putting on their tomb stones “I told you I was sick,” the amount of disbelief around rare, and invisible illness is baffling, does the gaslighting ever stop?! I would like to think someday doctors will listen to their patients instead of telling them they are not dealing with the hardships they are dealing with. Doctors telling a patient something is hearsay because there is no note from another doctor makes this even more infuriating. It seems as though being chronically ill with a rare diagnosis means battling not being believed for longer than we would like. There is something that comes up in my care and I am questioned as to how bad I am actually doing. If I am faking anything it is faking being ok, when I am surely far from ok.
I am frustrated today with the medical system and how the gaslighting seems to have ensued all over again. While I have hope for days to be better, today I feel tired, wore out and not believed. It is never a good feeling, to feel as though your invisible illness doesn’t exist. These toxic things doctors do add to the troubles we face instead of elevating some stress they are adding to it. Today I am tired, I appreciate you taking the time to read my thoughts and hope that today hope finds you in unexpected ways.
CPTSD makes me feel alone. I feel isolated from the trauma I have lived through. Experiences in time I can not erase though I long to delete them from my past. Isolating myself makes me feel safe yet alone. I think that being alone during these times is safer for me. With raw emotions at the surface of my being, no one can scratch them if I recede into myself. No one can touch my hurt; no one will see it either. CPTSD is suffering in silence, alone with no one to carry you through the numbness followed by the emptiness that topples forth from our heads. Is CPTSD making me feel like an outsider looking in on my life? Is it the trauma? Is it the loveless life I led? Does the absence of love cause CPTSD?
Why do I feel like I can write all day? And other days, I feel as though there is too much going on in my head I can’t even start to put it on paper. I want to write myself to a better state of being, but I feel stuck in a web of doubt and disdain.
I know this numb feeling is from the CPTSD; it causes me to feel overwhelmed, overloaded, and like nothing I am doing is worth it. I feel secluded in the feeling, but I know others living with CPTSD feel the same. I see the posts in the online forum I joined where others talk about how they think and then isolate themselves. The isolation is so damaging, but we do it anyway? Why do we do it? Why do we withdraw from people who offer help?
I withdraw because I feel the darkness of my CPTSD has the power to dismantle other people’s minds, and I do not want to be the reason someone is sad today. I have tried to kill myself in the past, and I am not ashamed to say that stigmatizing someone struggling with these thoughts is censorship and not conducive to healing.
Suicide rates are statistically higher for men and women who have PTSD. “Across the entire study sample, suicide rates were 12.9 per 100,000 person years, rising to 53.9 in those with a PTSD diagnosis (67.2 for men, who generally face higher suicide rates than women)” (Lane, 2020). In the sample study discussed by Lane, the evidence is shocking, and it makes me wonder what is being done for people with CPTSD and PTSD for recovery. In comparison, there is less social stigma around mental illness. I feel as someone living with CPTSD; there is not enough talk about PTSD; it is still a stigmatized topic.
When people tell me they are there for me, I believe them, but I don’t want what I am going through or have been through to affect them negatively. I want to protect others from the things I could not defend myself from. Each time I sit down to write something about CPTSD, I feel shame; why? I am not ashamed of the fact I have it; I feel as though there are toxic portrayals of people with CPTSD/PTSD in cinema.
I, like many others, want to be seen and understood. But the cycle of CPTSD is something that puts things in motion; feelings, thoughts, and actions can help to shift these. When trauma is caused by a medical system set up to help you in your time of need, you fear returning to a place like the ER expecting more trauma to follow your home upon discharge.
Today I am not ok, today, I feel emotions I have not felt for a while. While my mind continues to flash through moments in time, I want to rip it from my being. I am stuck with them for life. I can only cope, calm myself and do what I need to do for myself. It is getting hard to see through these tears-ridden eyes.
I can’t not bring myself to message people on days like today. I can not reach out because I am unable to. I can not formulate the words I need to be able to talk about how I feel. My mind turns into a cage when the depressive episodes of CPTSD take over. I want to lean on others, but out of fear I do not. I isolate, like many of us do.
While I sometimes wish I did not experience all the trauma life handed me, I am thankful for life; this hard life has shaped me into who I have become. One does not become resilient without silent reflection of the trauma and hardships faced when everyone has their backs turned. I am not my diagnosis; I am a woman, writer, artist, and lover of video games.
Today I am not ok, and it is because living with CPTSD is a challenge; each minute of today has been challenging. Thank you for reading me and giving me a moment of your time. Today I am surviving the best I can.
*Trigger Warning this blog post talks about domestic abuse/domestic violence*
Why am I writing about abuse on a blog about surviving chronic illness? I am writing it because enduring chronic disease with an abusive spouse makes it harder to survive and strive for the things we love. Abuse can happen in relationships when dealing with illness; people can get burnt out and become abusive because of the stress illness puts on them. However, someone being stressed out and in caretaker burnout does not give them the right to treat you poorly. It takes a weak person to want to destroy another and a strong person to want to lift others up with encouragement.
Whenever I think of you now, I feel sick to my stomach. A toxic love, an unlovable marriage, plagues my mind when I am thrust into the past. Why did I think that you were mine forever? You stayed with me in good and bad times, but you were not truly there. Your harmful heart hindered hatred towards me. The hatred grew into resentfulness, which shaped you into a demonic being trying to erase my existence.
Society blames women like me, telling us it is our fault for the abuse we face. Blame, lack of responsibility, and accountability are put on our abusers. Why? Why do people lack accountability? “You made me do this,” something that has been said to me countless times throughout my life. I didn’t make anyone do anything; people choose to be abusive, hurtful, and vindictive, my actions may cause a reaction, but it is that person’s choice to be offensive, abusive, dismissive, and heartless towards me.
Ending the cycle means going to therapy and stopping the cycle of hurting people. It means being accountable for one’s actions. Many men have told me, “No one will love you like I do,” as though I am loveless without them and will be without love. Abuse isn’t love; abuse kills love. Abuse drains the person being abused; it brings the survivor of abuse to a place where they become cynical and believe there is no true or pure form of love.
“No one will help you as I will,” comments are made to form some dependence on others. Comments made by abusers are their opinions, and they are not reality. Recognizing these comments come from a place of control and not love can help survivors realize they have self-worth outside of the abuser.
I think of you sometimes still and not with fondness; I think of the hurt you caused and the control you held over my life. I am no longer yours, and I am happy about that. Abuse isn’t being loved, abuse is control, and abuse is a way of manipulating another person for benefit. Abuse destroys people and relationships. Hurt people will continue hurting people if they do not address their trauma, causing more scars and marring others.
Being an abuse survivor means taking a stand against domestic abuse and violence. Not all scars are physical; some are psychological, and just because you don’t see the abusive nature of someone doesn’t mean it isn’t there. People are different when they are in a romantic relationship; they may act kindly towards friends but be a terror toward their spouse; this is why the stigma needs to end; this is why more people who have been abused need to share their stories when they are ready to break the silence and stigma of domestic abuse.