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.
Endless sparkly pills to make my life a little brighter.
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.
What are your diagnoses? Which one is causing the most problems right now?
rheumatoid arthritis, spinal stenosis, anemia, fibromyalgia, spinal lipoma, slipped right hip disc, ptsd, major depression disorder, general anxiety disorder, mood disorder, bipolar 1, obstructive sleep apenia, high triglycerides, diabetes 2. probably my fibro
Could you explain what a day in the life looks like for you?
i spend most days working! doing my 8/9/10 hour shift. spending 3-4 hours after that with content creating for youtube/instagram/etc. etc. eating while watching some tv, doing physical therapy moves and exercises, taking meds throughout the day, doing energy conserving versions of things like hygiene, cleaning, eating, etc. working my 3 other 2-3 hour part time jobs.
What are some complications of the illnesses you are living with that you are living with? Please include photos if you like of how your diseases affect you.
daily pain, brittleness, inflammation, hard time falling asleep and staying asleep, lower energy, energy being used up quicker, spending lots of time at appointments/medical complications, having to work overtime because i have no pto and any medical things i do is unpaid, different levels of ability depending on different days and unable to know ahead of time what level i am at that day, lots of money being put into medical care et al, limit the amount i can work regular and overtime(unable to work 4 10 hour shifts to makeup time, sometimes can only do the 8 hours in the day), unable to clean an entire room in one day, unable to make meals on the stove or oven, have to break up laundry really micro steps can only go to about 4-5 places in a day that include places that have powered scooters or lots of seating, can’t spend a whole day doing things. can’t go out and do things back to back like both saturday and sunday, can’t go to events or cons due to corona, must still social distance and six feet apart, still must wear masks still must avoid indoor time with others.
What kind of challenges have you faced in the medical system because of your diagnosis?
maintaining my muscle relaxers and immunosupressing medications and nerve medications. doctors will put me on something then not want to fill it anymore. or i become out of network and each visits costs hundreds of dollars for a med refill appointment.
What things have helped you to cope?
my 12 step program, my medications, combing doctors with alternative medicine like aromatherapy massage chiropractor, supportive family a job where i can see more appointments than usual and take breaks when i need to supportive doctors a group of friends who are also disabled.
What are things that bring you joy in life? Please include photos of these if possible (if you want to)
getting my nails done, getting dolled up, tea, comic book tvs and movies, massages, nice restaurants, little twin stars from sanrio, good friends, music, concerts, alternative fashions the internet and social media.
Don’t let them stop you from getting the care you need.
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?
Chronic Illness Suffers Do NOT Need to Justify Their Illness
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.
Getting the job you love with a disability can be challenging, career counselling may help you.
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.
References
Admin, C. C. C. (2018, December 12). Find a fulfilling career path. Calgary Career Counselling. Retrieved January 24, 2022, from https://www.calgarycareercounselling.com/
Amundson, N. E., Harris-Bowlsbey, J. A., & Niles, S. G. (2014). Essential elements of career counseling processes and techniques (3rd ed.). Pearson Education Inc.
Career Management Services. (2020, November 7). Career Counselling in Calgary: Aptitude testing: Online counselling. Work That Fits. Retrieved January 24, 2022, from https://www.workthatfits.ca/
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
Pordelan, N., & Hosseinian, S. (2020). Design and development of the online career counselling: A tool for better career decision-making. Behaviour & Information Technology. https://doi.org/10.1080/0144929X.2020.1795262
Sleepless nights, and exhausted days. CPTSD is complex post traumatic stress disorder, it is caused by multiple traumatic events. I have been living with CPTSD, and insomnia for over a decade.
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.
Life In The Bubble 