AV俱乐部

What It鈥檚 Like听is a series launching for听AV俱乐部 Accessibility Week, one that provides members of the Dal community with an opportunity to share their first-person perspective on living with a disability. People are welcome to share with their name or anonymously.

Submitted by Anonymous:


Tell us a little about yourself and/or your role here at Dal.

Statistically, because of my (dis)abilities, I would not have completed a university degree, never mind graduate work. Statistically, I would not be gainfully employed in a profession I love and with job security.

What do you wish people knew about your disability?

I have bipolar, which is an episodic mood disorder. When I am having an episode (which can last weeks) there are significant mood changes, energy levels, thinking patterns and behaviours. When in an episode, I am not mentally processing anything in my environment as I typically do. It can be impossible to reason with me. I am an entirely different person. At the extreme, the mood episode can include suicidal ideation, taking physical, social, or financial risks (e.g. gambling, going on spending sprees), and being reckless (e.g. driving and weaving a bike through the middle of downtown traffic, believing you are invincible which my daughter witnessed me do), or making extreme and spontaneous decisions: once, spur of the moment, for reasons unknown to me afterward, I almost bought a plane ticket to India for the next day. While not all people with bipolar experience psychotic features, I do and this can include delusions or audio and/or visual hallucinations.

Extreme episodes require hospitalization to keep me safe and to adjust and regulate medications until I stabilize. I have been hospitalized many times, for as long as two months at a time. When in a mania, I have been heavily sedated for 24 hours at a time so that I finally sleep (after going a week without sleeping one minute). In a mania, not only have I not slept, but also not eaten (I was told that I said I 'felt sorry for mortal people who needed to eat to survive.')

I mainly experience what are called mixed episodes, which means exactly what it sounds like. I can have severe depression, yet also have manic symptoms such as not sleeping, irritability, and high energy. People in mixed episodes are at a much higher risk of suicide because they are extremely depressed and also have the energy to follow through with the suicidal ideation.

People with bipolar can 鈥渞apid cycle鈥� 鈥� this means that you can switch back and forth from depression to mania, over the course of a year, a month, week to week, or even day to day. I have to take medication every day, all year round, to prevent, or make less severe, episodes. I need these to regulate bio chemicals, just as people with diabetes require daily insulin to regulate sugar levels. Some of these medications are very hard to live with because they cause things like significant, uncontrollable weight gain (I鈥檝e gone from 115 lbs to 155 lbs over the course of a few short months as a result of my medication), and terrible brain fog. Thus, people with bipolar are notorious for going off their medication when they are feeling well, to escape the side effects. And the result is always the same, and always disastrous. No one wants to believe and wishes that you can just 鈥榬ecover鈥� from bipolar more than the people who have bipolar. It is, however, a life-long illness. Every episode we have can damage our brain, and can make our next episodes more severe.

I do not manifest (or experience) symptoms of bipolar when I am stable. Please allow me to express 鈥榯ypical鈥� expressions of joy, giddiness, goofiness, sadness, frustration, anger, without always attributing my behaviour to having bipolar. When I am well, I am well (as if there is no bipolar). This is the true me. Please stop treating me with fear, avoidance, judgement, suspicion, and/or paternalism. When I am well, please treat me like you did before you learned I have bipolar.

There is so much stigma around people with bipolar and other mental illnesses such as schizophrenia; so much stigma that many, if not most of us, hide our diagnoses. We cannot talk about it for fear of being labeled 鈥渃razy鈥� (and treated accordingly). Because we hide it, and people don鈥檛 know we have bipolar, or understand bipolar, they do not recognize when we are showing symptoms of a developing episode and so do not step in to help us seek medical attention (and so it gets worse and worse). We often do not recognize or heed the warning signs that we are going off the rails.听 My two most common warning signs are sleeping less and less and beginning to have visual hallucinations.

We often experience people using language that is very insensitive, hurtful, or ill-informed. This might include people describing things like the weather as 鈥渂ipolar,鈥� using the word 鈥渋nsane,鈥� 鈥減sychotic,鈥� or 鈥渓oony bin鈥� in everyday conversation, or talking about people with mental illnesses in a judgemental, cruel, derogatory, or ignorant way (not knowing that they can be talking like this in the company of someone with mental illness). People may talk about things like, 'I'd never date someone with bipolar.' We hear things that make us feel unlovable. We hear things that HURT. This use of language tells us that that person is not 鈥渟afe鈥� and we are sure to conceal our illness from them.听

People minimize the severity of the illness by doing things like giving us (useless) advice about how we could completely control it with diet or exercise, more positive attitude or determination, 鈥榠f we really wanted to.鈥� They may be critical or judgmental of my need for medication. Others may say we鈥檙e faking the illness to get out of school or work, or say that 鈥榖ipolar isn鈥檛 real.鈥� I鈥檝e even had two different counsellors in my life who told me that bipolar isn鈥檛 real and that I should stop taking my medication, and just learn how to regulate my moods better.听

Bipolar often has comorbidities (more than one mental illness diagnoses). These can include (but aren鈥檛 limited to) ADHD, substance-use disorder, a personality disorder, eating disorders, and/or PTSD (Post Traumatic Stress Disorder) or CPTSD (Complex Post Traumatic Stress Disorder).听

Bipolar typically emerges in one鈥檚 teens to early 20s. We can go a long time going undiagnosed, causing extreme difficulties in our relationships, school, and places of work, especially before being diagnosed and put on the proper medication. Quite a few people in the population carry the gene for bipolar but never develop it. For others, and quite often, the bipolar gets 鈥榯riggered鈥� by things like childhood trauma.听

It can be very difficult to complete school, university, or hold a steady job because of illness-related absenteeism. Sometimes, though, we can be very high functioning, in spite of the illness, and despite all the stats that indicate we will be chronically under-employed, under-educated, have run-ins with law enforcement, and live in poverty as a result of our mental illness.

Researchers estimate that between 20-60 per cent of people with bipolar attempt suicide at least once in their lives and that between 4-19 per cent complete suicide. I am in the 20-60 per cent.

What accessibility changes would have the biggest impact on your experience here at Dal?

Stigma and ignorance are my biggest barrier. What would make the biggest impact would be widespread and meaningful education. Through education, the stigma around anxiety, depression and stress has lessened. There are no learning opportunities around other mental illnesses (e.g. bipolar, schizophrenia, eating disorders, PTSD or CPTSD, substance use disorders) or symptoms such as psychosis, hallucinations, or delusions. Education would reduce stigma, create a safer and more supportive/compassionate environment, increase the likelihood that people would not try to hide their illnesses (and would so feel more comfortable about asking for help, accessing resources and supports on campus), may reveal that more resources and supports are needed,听 and would start to normalize conversations about mental illness.听听

The other change that would make a big impact is having access to a psychiatrist, which is nearly impossible. Even if we have a primary care physician, few are trained in mental illness treatment or are comfortable doing so. Without access to psychiatrists, people with bipolar and other mental illnesses cannot get help until they have reached a critical degree of illness, which has cascading results (hospitalization, encounters with law enforcement, destroyed relationships, discontinued education, loss of employment, and/or suicide or higher mortality rates). With timely care, critical illness can often be avoided.

Until our campus climate and overall societal climate changes, out of self-preservation, I will continue to remain "anonymous."

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For more information about bipolar, please visit the following link:听

Previously in this series:
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You can find听all entries collected here.

Interested in sharing your own experiences?

We'd love to hear from you. Please take a look at our questions below and how to submit them. Please note that you can choose to remain anonymous if you wish. (Note: names will be visible to individuals receiving submissions by email).

Our questions for you:
听

• Tell us a little about yourself and your role here at Dal. (Note: If remaining anonymous, this prompt can be skipped 鈥� or, simply share as much detail as you feel comfortable doing).
  
  
• What do you wish people knew about your disability?
  
  
• What accessibility changes would have the biggest impact on your experience here at Dal?

If you鈥檙e interested in sharing your experiences navigating university life with a visible or invisible disability, please contact us at听today@dal.ca听with answers to the above questions or to set up a short interview.