Great Expectations: An Inside Look at Living with Chronic Illness

Faulty. Helpless. Guilty. These are a few feelings with regards to being a chronically ill adult. At the age, of 25, there are expectations for what one should be doing with their life. Live in a metropolitan city. Work a full time job or career. Pay the rent and feed yourself. All perfectly reasonable ideas of what 20 somethings should be able to do. Cultural standards, pressure from society, personal hopes and dreams all contribute to such expectations. However, these may not necessarily be realistic for everyone in their twenties. When we are unable to meet these expectations, parents and the like begin to panic. Please bear with me as a shed light on an overlooked sect of unemployed millenials.

I am not speaking of the atypical cases of 20 somethings that insist they must focus on their art, deny there are any job openings out there or believe there degree is meaningless in the working world. I am here to self-advocate and describe what it is like to be a twenty-something living with a chronic illness.

Shameful. Frustrated. Worried. This is how I feel onlookers label my case of unemployment. Trust me when I say no one feels those emotions more than I do as the one who lives with a chronic illness. The circumstance affects me first and foremost and I am the one who not only deals with the pain of disability, but also from the judgement of misunderstandings. It is not that I do not know what to do with my life or how to get a job. Of all the people who want me to have a job, I want it the most. 

I feel ashamed that I lack a career. I am frustrated that I do not have the energy or physical abilities to sustain myself at a job, let alone normal, daily activities. When the process of showering in the morning usually sends me back to bed, it becomes quite hard to fathom putting forth the energy I already lack into eight hour workdays, five days a week. 

I am worried I will be a burden to my caretakers. I am concerned that people will perceive me wrongly. Most of all I am worried people will reject me for what I cannot do, rather than what I am actually able to.  

Lazy. Freeloader. Unreliable. As a disabled emergent adult, I feel I am often brutally criticised for a problem I did not ask to have. The absence of judgement, is filled with suggestions. People try to correct my so called problem by proposing job prospects, handing me applications, and introducing me to recruiters. These are all very kind gestures, yet not exactly what I need. All the above do not solve my health issues. A job is not the answer, for it would be too demanding, stressful or physical for someone who is unable to perform the tasks without jepordising her wellbeing.

Seriously. If could take that 9-5 case manager position at a world renowned non-profit organisation, I would. Instead, I politely decline the offer or choose not to apply for the position from the beginning. Not because I am lazy, enjoy living off of benefits or find it thrilling to disappoint others, but because I am simply following popular instruction, and placing my oxygen mask before assisting others.

As one the one who lives daily with a debilitating condition, I have become an expert on my limitations. I would love to pretend my condition does not exist, in fact most of the time I am in denial about my illness. Other times, I painfully acknowledge how my symptoms disable me from functioning optimally at work. I also recognise that certain aspects of work interfere with my abilities to cope with my condition. It is difficult to work when I am in pain, having tremors, short of breath, weak and feel faint. Those are only a few confessional insights about my condition. To minimise these symptoms, I need to keep hydrated and nourished at unforeseen times, rest (lay down) and keep my body temperature regulated, among other treatments. If caring for someone with an illness can be called a job, then I already have one. Caring for my body is a full time position.

As opposed to a regular, also referred to as a “real” job, my vocation is to manage my chronic illness. I do not need to be told what I could or should do. Let me do what I can. You would be surprised what I can accomplish beyond the 9-5 expectations. I do more within my limits, not outside them.

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