Worthy of Work
Last updated: August 2022
If somebody is experiencing active, ongoing seizures then it can be hard to maintain a working position. Even when somebody's epilepsy is considered managed by medication, it can still be hard to manage a work role that works with side effects possibly still experienced by the medication, including fatigue.
The fatigue and stress of working with epilepsy
Having hours that work within the person's needs to make sure they're not overworked or made to work to the point of fatigue – which could trigger a seizure – is important. The same is true of the work environment, with the stress of work possibly causing a seizure itself.
These are just a few examples but good ones to show that maintaining paid work can be extremely difficult for people who have epilepsy. This can cause many problems. We need to afford medical bills, medications, and medical procedures on top of standard household bills. The can lead to us being further dependant on loved ones and any government "benefits" we qualify for (which are never enough to get by on).
When somebody is diagnosed with epilepsy, we commonly lose a lot of features of independence. Losing our job or not being able to find an appropriate job, plus the fallout of such a problem, leaves us even less independent which can affect our mental health.
Feeling like a burden when we can't work
Personally, when being unable to work, the words that most consumed my mind were "useless," "burden," and "wasteful." I was quite depressed by it and felt extremely low self-esteem. Also, while only explaining to few people what my health situation is, I felt awkward and very down on myself whenever I had to tell somebody I wasn't working or studying.
We live in a very judgmental, capitalist society that commonly base a persons worth based on money or monetisable knowledge. So when a person who can't currently safely work or work on building knowledge towards a job – due to health that they don't feel comfortable disclosing – is confronted with the "What do you do? Work or study?" questions... It can be very uncomfortable and lead to "worthless" flashing in big, bright, red lights in their mind while people assume they're "lazy" and "bludging," especially the older you get.
Working in epilepsy advocacy
However, if we continue on with experiences similar to mine, of which there are many, people find themselves using that time that would be spent studying or working and doing things. Like organising fundraisers for their local epilepsy organisation or organisations they've received help from during their journey. Or doing public speaking gigs where they speak on their experiences, organising petitions with the aim of bettering the laws, both local and federal, surrounding health or even going as far as bettering the local health facility's policies.
We end up doing so much to better our community out of the goodness of our hearts and we're lucky if we even get a "lunch on me" or free company t-shirt despite the people in power in these situations knowing the financial position we're in.
So often people of minorities – with people who have epilepsy falling under the disabled and chronically ill community – are the most passionate about bettering their community. Yet are the most overlooked and mistreated.
Being paid to write about epilepsy
For example, there are many companies who would like an article like this one, or even bigger, written for them by me for free despite the time I have to set aside for brainstorming topics, planning how I will write it, and writing it. This doesn't even take into account the skill level used to write such an article, or the attention and money my work will bring them. Nor does it consider arguably the most important aspect, the emotional taxes of tapping into my own experiences for extended periods, breaking them down, writing them out in a way that makes not just me understand what I went through, but anybody in the world.
This is harder than it sounds, as I can remember my experiences from my point of view easily enough, but to share in a written manner in a way that hopefully even a bigot, who starts reading with no respect for my experience, will end the article with a newfound respect. I have to also use emotional taxes to harden the walls around my soul for when those bigots who don't find new respect for me or decide I need to know all their thoughts.
All of this for one article about one topic for one organisation.
We are worthy of a voice in the workforce
Thankfully Health Union here understand what position I'm in and what responsibility they have as the people in the position of power to make a change of how we overlook valuable members of society and projects bettering communities, like this website is, by paying me well.
I'm proud to be a part of EpilepsyDisease.com with Health Union and WEGO Health and am delighted to say that these organisations are standing up for what's right, taking the first step of change, by making sure every member of this project is paid what they're worth and that the people at the centre of this project, people with experience with epilepsy, are given a voice and opportunity of power.
Do you have epilepsy? Or are you caring for someone with epilepsy?
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