Those of us living with rare disease have challenges others may not realize. Fighting against a system which tells us we are not sick, we are not suffering. That perhaps we are making up our illness.
When I first realized how sick I was after diagnosis some doctors seems to brush off my diagnosis of EDS Ehlers-Danlos Syndrome as something that only affects my joints. This made me feel unheard, and misunderstood. EDS is caused by a default in the collagen of the skin of the sufferers of this illness. We are born with it, and many of us are not diagnosed until we are much older. I was not diagnosed until I was in my twenties.
Rare disease means becoming aware of the problems your disease can cause, when we as patients tell doctors them doing specific tests may cause us more harm than good. We tend to be met with, “I went to medical school, you did not.” Yes, I understand doctors went to school and studied all sorts of diseases, but there is no specialist I have come across that can tell me everything there is to know about my diseases. Normally they are asking me what my disease is doing to me, because they do not have another patient like me.
Medical gaslighting is being told you do not have your disease. This has happened to me and countless others. Whether is it from doctors, or people on the internet. No on knows what we experience besides us and our families. People who figure they know how sick we are and have not been around us, truly know little about our diseases. The sad reality of this, is sometimes doctors fall into this category as well. Doctors have instead of looking at my file have looked at me and told me to my face while in the ER, “you do not have these diseases they are really rare.” This is medical gaslighting, I have the diagnosis’s and I have the scars to prove it. I live with complex illness and having to prove myself to doctors, and people on the internet regularly is exhausting. The reality of the diseases I live with is that they are disabling, they cause harm and people not believing me doesn’t change the reality of the illness nor their hardships they bring.
Working together with doctors who believe you and support you will get you further than allowing people who do not understand your illness attack and gaslight you. Do what is best for you, you know the truth as do I. Living with complex illness means advocating for yourself regularly. Do not allow them to silence you, I will not give into the push to quiet me because of gaslighting. Medical abuse is real and is something which needs to be discussed, medical gaslighting is not OK. When we come to the ER and are in distress the last thing we need while fighting for our lives is to have someone tell us we do not have the diseases we have. This can lead to lose of life, is being right more important than listening to your patient?
It has been a long time since I wrote a blog, I am still chasing some sort of normalcy which is difficult but trying my best to have a life. While I am doing what is best for me, I am again met with the distain healthy people house for people with illness and disability. While not all health people are like this, when it comes to people trying to tell me what I need to prioritize I have an issue with this. I will always put my health first. I will do what is best for me and my health since I am unable to do everything I want to do. I do try to do things with others like collaborate, but hanging out with people often can lead to being extremely drained tired and unable to function for school. My passions are school, writing and art, and when I do not prioritize my health, I can not do those things let alone hang out with people. I make time for people who treat me good, who treat me human. Sometimes people call other people out in a way which is not understanding nor helpful. People will say things they actually mean to say to themselves, they are projecting their issues. People think they are calling someone out who has chronic illness when in actuality they are just making the situation worse. When someone with chronic illness can not make something because of their disease they are viewed as flake or lacking priorities. This is not true. Having chronic illness and putting your health first is not a bad thing. You should be doing what is best for yourself and everything else should be secondary. We as the chronically ill must protect ourselves and we know our limits. I have found myself again brought to the conclusion that healthy people will continue to have hard time with people with chronic illness because they still us through an ableist lens. They figure we should be on the same page of them, instead of them bothering to see our perspective. Needless to say, being reminded of this again has brought me back to the blog to talk about this issue. Healthy people thinking they are calling out an issue in a disabled person are not seeing the illness nor the hardships that person is living with. People who are sick are not flakes, it is exhausting to fight for your life every single day. Sometimes I disappear from social media because I feel misunderstood. I feel people are not understanding the hardship of illness. Every now and then I will get a message from people about how they appreciate my sharing my story and those messages are why I continue. People who are do not understand illness may never will understand, but I will continue to talk about the ableist undertones in what people do in hopes of one day shredding ableism to a pulp. The fact that healthy people feel the need to say things to the disabled community just goes to show how the view of the abled bodied is favored over the chronically ill and disabled.
As an immunosuppressed woman living in the age of Covid-19 I have felt invisible, unheard and ignored. Covid-19 has changed all of our lives, those of us who have been shut away from the world for years now feel unheard. It is hard to be unseen and not given the soap box to stand on to talk about about how this virus has isolated people like me further.
I have watched the world change outside of my window for two years now. Seeing people walk down the street free of mask. While I sit here behind a window gazing out wondering what types of freedoms they have while I feel as though I have none. Locked away from the world for my protection.
It has been a lonely and isolating time, I have reached out to news outlets and not heard back. I wanted to shed light on the experiences similar to mine. Those of use who are scared to go out, and can not go out even if they wanted to. We have become house plants, people who are watered and nourished within our homes, our mental health suffers. I long to see people and not fear getting Covid-19; this invisible illness which is something that can harm me greatly.
The inspiration of my comic came from my personal experience, I feel that the news amplified anti-maskers more so then the ones at risk from Covid-19. There is an unfairness which stems from ableism, which causes a distain towards the chronically ill. This type of attitude is incorrect, if Covid-19 showed me anything it showed me that systemic ableism runs deep within our society. I feel frustration towards the narratives pushed into the forefront and hope someday those affected and isolated will feel heard and seen.
The disabled population is a large and diverse community made up of individuals who experience impairments or difficulty in any domain or combination of environments (e.g., physical, cognitive, sensory) that impact their ability to function in a typical way in society. Due to the stigma and discrimination associated with ableism, in conjunction with limitations in abilities needed for specific jobs, disabled community members face numerous barriers related to employment. Ableism is defined as discrimination or exclusion, which leads to the oppression of people living with mental disorders, emotional disorders, physical disabilities, and/or chronic health conditions (Kattari, 2020). Disabled people face constant dehumanization by society as a whole; thus, when working with anyone with a disability, it is vital to treat them as human and acknowledge their capabilities to pursue meaningful and purposeful work. Many disabled people cannot find work despite actively seeking employment and sometimes feel they need to work alongside other disabled people, as society has a hard time integrating the disabled population. In schools, many the students in the disabled populous struggle to make connections with their peers and achieve academic success due to a lack of resources (Kattari, 2020). Thus, it could potentially lead to a disabled student feeling frustrated and leaving the programs they are enrolled in due to a lack of support (Kattari, 2020). This is likely similar to what disabled people experience in the working environment. Helping a disabled individual find the right job requires finding a setting that is equipped to accommodate the disability the individual faces. Career counseling with this community may also involve preparing clients to advocate for themselves and their needs in the face of potential workplace discrimination and other forms of ableism. The purpose of this paper is to explore and evaluate three career counseling services that are intended to meet the needs of disabled community members.
I would recommend they look into aptitude testing, which can be done through Career Management services (Career Management Services, 2022). Through aptitude testing, the client will be able to flesh out the needs and wants they have and realize what type of job may be the most gratifying for them to do (Career Management Services, 2022). An online resource that can be accessed for those living in the Calgary area is Calgary Career Counselling; they offer career counseling and coaching, career and job-search advising, education advising, workshops and webinars, and corporate services. The online resource for the webinars would be ideal for someone who has disabilities as an online setting would be more inclusive to potential limitations such as being unable to leave one’s home (Admin, 2018). Another option would be Career Joy; on the website, they offer customized programs to support clients in finding the right fit for them. The program I would recommend to disabled clients would be the essential program. The program covers helping the client to use tools to create their resume, coaching sessions, self-assessment tools, to name a few (Davies, 2022).
As discussed by Amundson (2014), Parsons laid the groundwork for career counselors. First, career counselors should evaluate their clients, including the clients’ abilities, attitudes, interests, and limitations (Amundson et al., 2014). Secondly, it is important to help clients build awareness of what the conditions of success are, in other words, what are the “advantages, the disadvantages, compensation, opportunities, and prospects in different lines of work” (Amundson et al., 2014, p.33). Lastly, my job as a career counselor would be to bridge clients’ abilities, interests, and hopes with existing career opportunities, helping them to formulate an idea of what the client’s ideal job would look like. Low self-esteem and morale may be present in career counseling work with a disabled individual; due to the toxic views within society, internal ableism narratives can form and stunt their growth. It is pertinent to address this issue, encourage the clients’ strengths, and not focus on the things they are not capable of doing. This is where an aptitude test from the Career Management Services would come into play. Helping to address what the client is good at and help them formulate a course of action.
Disabled individuals often find it challenging to integrate into society; they are expected to assume stereotypical roles in the occupations they choose, there is a smaller range of occupations available to the disabled community (Amundson et al., 2014). The rights of a disabled individual will be different from that of an able-bodied and/or able-minded individual, and having adequate accommodations put into place with their employer can help to ease the transition into the workforce. One example would be for disabled people who are allergic to all scented products; such products are common across office settings, food service settings, and more. Thus the only job opportunity for someone with this form of disability is a job that can be done from home or in spaces that have made explicit and thoughtful commitments to creating a scent-free workplace, which is rare. In this instance, Calgary Career Counselling would be a great fit to help the client to find job placement through their job search advising. Regardless of disability a career counselling client might be experiencing, it would be crucial to the counselling process to help the client seek a working environment with characteristics and accommodations that match the attributes and needs of the client. Finding such a match tends to promote job satisfaction, allowing the client to make a positive impact at work (Amundson et al., 2014)
Through the Career Joy website, the client can do a Outcomes Questionnaire. The Outcomes Questionnaire has been widely used to measure overall psychological distress; the higher the score the more distressed and induvial is experiencing at the time (Rochlen, A. B., Milburn, L., & Hill, C. E. 2004). For disabled individual using the Career Anxiety Measure (CAM) can help the counsellor and client understand the amount of anxiety the client is experience with regard to entering the work force, which may be especially elevated for disabled clients because of anxiety-inducing barriers and opportunities to be exposed to ableism throughout the job selection and employment process. This understandable anxiety would to be addressed before entering the work force and this could be done through the Career Joy wesbite (Rochlen, A. B., Milburn, L., & Hill, C. E. 2004). My Vocational Situation can be used to help to assess the problems the client is facing, the barriers which are hindering them from achieving their goals, and learn more about the occupation they which to pursue. (Rochlen, A. B., Milburn, L., & Hill, C. E. 2004 p.266).
Online career counselling would like be particularly beneficial to those living with disabilities, site like Career Joy, Calgary Career Counselling, and Career Management Services could all help to aid the transition into the work force and fleshing out the career options for those in the disabled community. Being disabled can present challenges with mobility, sensory concerns, allergies common to office spaces, and other resource-related or financial barriers to meeting in-person. Referring the client to sites like Career Joy, Calgary Career Counselling, and Career Management Services, would help to promote the awareness of one’s self, help them to flesh out career options, and help in gauging their career knowledge (Pordelan, 2020). By using the career decision scale, designed by Osipow et al (1976) we career counselors can ask multiple questions in the online setting (Pordelan, 2020).
Career coaching can be offered as an intervention either online or in person. Clients can approach their motivations of desire to help them in the outcome of their career decision (Edner, 2021). A career coach considers the desires, motivations, and personality of the client, helps them to find out what they want to do and uses their personality to find them a career they desire (Edner, 2021). Working together with a career coach can help the client to fine tune their career goals and to decide what their objectives are for their career (Edner, 2021). This is where career construction can come into play. Career construction can help the client “revisited, reframed, and reinterpreted in the context of present career concerns” (Maree, 2019, p.48). Sometimes the past experiences even if bad can be used in a transformative nature to help inspire their future goals and aspirations (Maree, 2019). Making sure the client has strong self awareness of their identity can be a confidence boost for them to continue to push forward (Maree, 2019). This leads into self-construction theory, it pairs nicely with career construction as it helps in “narrating stories of key career-life experiences and linking those stories to feasible future career-life projects enables people to (re)construct their often extremely fluid career-life identities” (Maree, 2019, p.48). Thirdly this led us into career adaptability, creating a space where the client is about to make “transitions, and dealing with work-related traumas in uncertain and fluid occupational environments” (Maree, 2019, p.49). Disabled people may be particularly likely to experience work-related traumas because of ableism, and addressing this issue can help a disabled client find the confidence needed to transition into the work force, this type of support could be done through any of the following: Career Joy, Calgary Career Counselling, and Career Management Services
As Denman states work is an importnat part of our lives not bieng able to work can led to isolation, decline in the will to live and a decline of personal well being (Denman, 2015, p.133-134). Thus, it is vital to help disabled induvial find job placements; as they battle the form of discrimination of ableism, it is also critical to address this issue before they enter the workforce to prevent further trauma. Disabled individuals have unique perspectives to add to their jobs and should not have to struggle with social stigma on top of it. In order to ensure that career counseling is competent and tailored to disabled experiences, specific service providers should be evaluated to ensure that they integrate relevant considerations for disabled clients across a range of disabilities, including cognitive/intellectual, physical, and more. For a disabled individuals living in the Calgary area, I would direct them to the three sites, Career Joy, Calgary Career Counselling, and Career Management Services, for each site to bring a different perspective and to aid in the transition of the client into the workforce.
Ebner, K. (2021). Promoting career optimism and career security during career coaching: development and test of a model. Coaching: An International Journal of Theory, Research & Practice, 14(1), 20–38. https://doi.org/10.1080/17521882.2019.1707247
Kattari, S. K., Ingarfield, L., Hanna, M., McQueen, J., & Ross, K. (2020). Uncovering issues of ableism in social work education: a disability needs assessment. Social Work Education, 39(5), 599–616. https://doi.org/10.1080/02615479.2019.1699526
Maree, J. G. (2019). Group Career Construction Counseling: A mixed‐methods intervention study with high school students. Career Development Quarterly, 67(1), 47–61. https://doi.org/10.1002/cdq.12162
Shattered into shards, as the pain perpetuated and propelled me backwards through time and space. Back toward my vulnerable younger self shivering in fear of my abusers. Shivering surrounded by fragments of my hearts, chipped away from my past, I try to compose myself. Fear swelling in my gut strangling every good thought as CPTSD consumes me.
The trauma thriving in triggered words, scenario’s of the past choking out the hope for a brighter day. Trauma trickling from my trembling hands, body collapsing as I am relapsing into my CPTSD mind. The episode is all consuming, not allowing me to be, not letting me break from the confines of this abused body and mind.
Starving for connection as I isolate myself. If I isolate myself I can not have a CPTSD episode in front of anyone. My trauma can only affect me if I isolate, but I don’t want to be alone, I don’t want my CPTSD to affect others. The internal struggle, confines me in confusion. When my CPTSD affects others all I think about is how to isolate myself again. How to escape, not to talk to people, to rebuild the walls around the vulnerable me, to shield me from all harm. Not allowing anyone to see who I am inside the hole which is my existence. Feeling like an empty shell going through the motions in this hell formed from years of trauma. If I isolate no one can see the embarrassment I cause myself from my mental health. I feel there is to much stigma attached to CPTSD, and struggle to find people to relate to.
The nights spend in wonder of my own brain and its constantly searches for solutions to puzzles of the past. Drowning in thoughts of old, ones in which trap me in the dead of night. Thoughts of things I want undone, but am stuck in the webs of trauma. Rooted deep in the depths the scars break open, pouring out the life I once knew, insides laying bare, I bar up my heart in the dark to protect myself from others.
The insomnia strikes, while I lay in the dark, listening to relaxing music in the darkness of my dungeon, yet, no sleep does come. I rouse at each sound, each creak, each small click of the heater as it turns on. The night brings with it the triggers of trauma, it brings me back. I wait in my safe place, but the body has kept its score, it remembers it all evermore. No matter, I can not escape my CPTSD. I wait in the dark for sleep to find me and carry me off. When and if it finally does the nightmares ensue. Nightmares in which I wake with pounding heart, sweats and overwhelming terror. Life lived, not forgotten, it wakes me from slumber. Scared to sleep, to tired to be awake, I am stuck in the in-between, never fully asleep, and never fully awake.
As the pandemic continues, I continue to feel ignored. It is with distain I write this. The disappointment I feel towards society is growing vastly, like an unpleasant fungus ableism spreads across the globe. More of my immunocompromised comrades lost in the muck of miscommunications, and left to isolate. Fake news spreads like wildfire about the vaccine. Heartbroken, shook to my core, the site of things I sought to never see.
Whispers of lies, “the immunocompromised do not matter, they were bound for death anyways their death does not matter.” Words, whispered on lips of those whom pretend to care.
Being told to continue to isolate year after year, now it has been two years since I have seen a friend in person. The lack of human face-to-face interaction is changing me. Two years, what of my mental health? What of the health of others like me? The immunocompromised are not expendable, and I am tired of hearing, “they had pre-existing conditions and succumbed to Covid-19,” as the message sounds to be our deaths are to just be a casualty not spoken for during this war on a virus killing millions.
I feel as though I am disappearing, losing sight of the world outside my window. Housed in these walls with two windows to the outside world. I suffer silently no one to hear me scream, cry as I long for a visitor. Long for someone to tell me what I mean to them. Longing for things of the past which have been expunged by a virus. Disappearing into the depths of loneliness, dissolving in disappointment from the waves of selfishness in society. Drowning, choking on ableist words, being pushed into the ground, as the ableists rise on their soap boxes.
We matter, the immunocompromised matter! Our lives are not expendable because someone else thinks so. We all get sick at one point in our lives. Where is the compassion? Where is the hope? What is the lack of care towards others, because they are not directly impacted? I am lost in the mess of the world, the confusion, the misinformation is killing people like me. Make it stop! I don’t want to see more people die to something that is preventable. I am not expendable, even if someone thinks I am. I am human, I deserve to live life, and deserve to be free from the cage I am confined in because of the selfish-narcissism our society has become.
I am despondent, struggling with thoughts of hopelessness, but I refuse to just disappear. I will use my voice and my writing to continue to talk of the miss guided views and ableism which have been perpetuated by the pandemic. Immunocompromised does not mean my life is worthless or that I should just dissipate into the background. I have hopes, dreams and aspirations. I refused to lay down and die. This fight is not over and I refuse to give into the ableist rhetoric.
I am working towards my goals, some dreams and some of the things in between. But it is rough. When you have ambition and drive deep in your being but a body that does not work nor listen it creates roadblocks and bumps a long the way.
I want to post on here more then I do, but my health does seem to dictate when I can write. I have been longing to sit down and write for a while, but the brain fog is creating blockages within the confines of my mine and I struggle to get out the words to write.
I sit here waiting for my online therapy appointment to start and remember how much harder things were last year at this time. My mental health took a dive, I was struggling to survive and yet, I am here I made it through. Things may be tough and challenging, but I am still doing the best I can to carry through. Diseases cause a pathway of distain, but can lead us to a new us and a place in which we belong.
I stopped live streaming on twitch for a long time, mostly due to the coivd19 pandemic and being frustrated, my mental health went south and my health followed suit. However, while doing nothing I realized I was making myself more sad, more depressed because my only outlets as an immunocompromised student, artist and cosplayer is the internet. The only way for me to connect with others is to be active on social media.
While I find social media draining there is also a peace and comfort I get from talking with like minded people and to me that is what makes social media click for me. It is what inspires me to continue talking, continue writing, and continue to stream on twitch and YouTube. While I feel sick, and am sick and am not doing well, doing things that bring me joy help me to cope with my mental health. When I sit around and simply watch TV I feel non existent, and I get depressed.
I want to connect with others, inspire others to keep living the lives they are capable of. When we are sick out lives are different to that of the normies, and our joys maybe more simplistic, this doesn’t make us invalid. It makes us human. We all have a life worth living.
I hope to post on here when I am able, and would like to be more frequent, for now if you do not see me on here, come on over and check out my other content. I draw creepy things live on twitch, I stream video games from time to time on youtube and twitch. And I am working towards my goals, perhaps at a snails pace but I am working towards things.
What is the truth about abuse? The social stigma that is attached to it. Abusers are not generally abusive with their friends, sometimes their true nature seeps through and other times it is not. I am tired of the abuse cycle, the sleepless nights, walking on eggshells and feeling unheard.
Abuse is not only physical but also psychological. Being abused leaves you worse then you were before, it destroys who you become and forces you to crawl out of a toxic love one in which you feel like you will never heal from.
I am tired of trying to sugarcoat being abused for other people to understand. Yelling at your spouse is abuse, it is unkind, and shows lack of respect. I deserve better. Anyone dealing with abuse deserves better. Someone can not claim to love you while asserting dominance, control, and creating fear to keep you under their thumb. The reality is, abuse is real, many people do not talk about abuse as they fear the backlash from their abuser, and abusers are master manipulators as they promising change, never changing. They have no problem spinning their web to make others see their perspective only and not acknowledge their wrong doings to another person. Generally using their resentment towards their loved one as their secret fuel to try to destroy them.
Being told no one else will love you like they do, no one else would ever do what they are doing for you, is something sad to make you feel small and something to make you stay in your place below them. They will talk about their lives and what they are experiencing but shut you down and not listen to what you have to say. They will say there are to many problems, are you are to sensitive, the right person for you will accept you and all of your flaws.
People whom have survived abuse know the signs, they know what will happen should they ignore red flags. Sadly, illness can lead to the person we love and care about getting care takers burn out, and care takers burn out can lead to abuse. There is hope, there are resources available. Do not give up on you. Abusers will try everything to squash your hopes and dreams, and make you reliant on them. Do not lose yourself.
I found myself after years of neglect, abuse and depravity. I am recovering, I am bitter, but working through it. People can hurt and mar us, but we must do what is in our best interest to survive, to thrive. I have no tolerance for the tactics of abusers now and will draw a line and cut ties if I need to.
I will tell my story, I will not be quiet, I will share what I have been through, the selfishness and lies of others will not quiet me. I am making videos on my youtube channel both art related and vlog related. Lets talk a bit about what has happened and how the resentment of another person nearly destroyed me https://www.youtube.com/watch?v=q5YV6s7Wh6o
When normies have told me how they can not sleep I can not relate. I have high norepinephrine in my body pumping all of the time, and at night is as though my hyperPOTS is waiting for the cover of night to mess with me. I am so tired but can not sleep. I find no reprieve in rest as I seek an unattainable feat. Slumber deep in souls peace keep is what I seek. But disease keeps me awake, a watchful eye I did not ask for. Tired now my body ache, slips on eye lids heavy, blood pressure rising as sweat and tears break free. I long for the night to cuddle me and rock me to sleep. Norepinephrine is all I find in the slumber-less land of hyperPOTS.
One of the reasons I’ve been so busy over this summer is because I’ve actually been working more on my book which I actually completed. I am so excited to actually even say that I have finished it. I have written it over and over again over the years I’ve written it and destroyed it and come back to it and destroyed it again. There’s something about writing the book that I have just found difficult. It is a fragmented multifaceted point of you that kind of jumps around from different time periods of my life. However it is something that I have been working on for a long time I know that it is now in the final stages and I hope to be able to publish it soon.
Another thing that I’ve been doing is been doing a little reading things here there where I’ve had to like do writing prompts and then writing a short story. Over the last year I’ve had some of my short stories and some of my poetry published and some anthologies and I am very excited about the future going forward. I know when I got my first acceptance letter I actually cried I’ve never thought it was going to happen. Deep down I always knew it was going to happen because I am a pretty driven person and I don’t want to give up I want to continue to move towards my dreams and I want to continue to try to make a difference within the chronic illness community and help inspire other people to follow their passions their dreams and live a life where they are happy.
A lot of the time when living with illness we seem to get lost in the rut of being sick. I taught myself to lift myself out of the rut numerous times it is very difficult to do so but it is possible remember that you need to be your own strength. Sometimes leaning on each other is a great way of being able to continue forward but sometimes other people cannot be there for you when you need them the most so this is when it’s the most important to be there for yourself. This is why I started writing and fine-tuning my book. I wanted to be able to finish it before 2022.
I feel as though there’s a fire burning within me that I need to let out and stop trying to expunge it. Even while I’m writing this I am favouring and have extremely bad brain fog but I know that I want to do this I want to continue my blog and I wanna continue raising awareness.
I have a lot of things on the go just as far as trying to keep myself busy mostly because of the whole Covid situation and being locked inside.
COVID-19 has really showed me who my friends are well and aren’t because through the course of the last two years I’ve had to cut people out because of their selfishness when it comes to my health and I’m not willing to put my health on the line for a visit.
I also wanted to share I am on tiktok and make videos on there for awareness come on over and check them out. While I do not post everyday I post when I can. https://vm.tiktok.com/ZMREwmfJ6/
Thank you for being here and reading my post and I hope to do my best to raise awareness and to spread hope because there is hope when you’re living with chronic illness and it doesn’t have to be all dark all the time. Yes the journey is difficult and challenging and people that don’t have chronic illness we never understand it. But you know what, I understand it and I know you’re not alone because I felt similar emotions too.
Will post again soon thank you for being here and taking the time out of your busy day to read my blog.