Working While Disabled
When people first begin to get to know me, both within and outside of a work environment, they have no idea that I am chronically ill and disabled. I was not born with this disease, but I was diagnosed in May of 2016, six months after my first episode, with Multiple Sclerosis (MS). It took a long time to adjust and acknowledge that I had this life long disease now, and I had to start making adjustments in my life to accommodate. I didn’t even comprehend how it would affect future job prospects as I was taking a six-month break after graduating university when I first fell ill. When I finally felt adjusted enough and had a resemblance of normality to my life again, at least enough to re-enter the workforce, I discovered just how challenging that would be. There are a lot of doctors appointments that need to be attended to, allowances made, adjustments needed in the workspace and the occasional day off if you have a flare-up.
It took until Melbourne OZ Comic-Con of 2017 when I was browsing at the LUD booth and made the off-hand comment of the issues in finding work to finally have someone look at me as a human and not my diagnosis. Alex very quickly offered me a place to try working for Level Up Dice as a part of the convention team for PAX Australia 2017. Regardless of the fact I was currently using a cane to get around because I was in the middle of having a bad flare-up, Alex was willing to offer me a chance and work around my needs.
After working a few conventions with Level Up around Australia, I was offered my current position as a part of the Customer Experience Team. This brought a whole new set of challenges for the company and myself to tackle. Conventions can be taxing on my energy levels for a weekend, but I would have time available afterwards to rest. Now, I would be working a consistent week while navigating my MS. This can be a challenge since you cannot predict how MS will affect you until you are in that position.
Each person that is diagnosed with MS experiences it differently, and what symptoms I have, will be completely different for someone else with the disease. For me personally, on my worst days, I can experience a feeling of constant pins and needles for my entire left leg, fatigue, brain fog, incoherent speech, nausea and dizziness. This changes every day, heat can definitely make it worse and I can feel all of them, none of them or a mixture. As you can imagine, these symptoms can make work rather difficult, both in my ability to perform my role to the best of my abilities and to the standard I have set for myself. However, over the past year, through trial and error, I have found a few tricks that have worked for me to help ease my symptoms and make work a little easier. These include;
- Repetition, doing the same tasks over and over until they become second nature
- Making a daily to-do list as soon as I start each morning so I can mark off everything I need to do and still have to work on
- Using a Journal to track all my ongoing projects, tasks, and things I need to remember
- Take frequent breaks throughout the day for water and a stretch to maintain energy levels
- Having a flexible work schedule. This includes working from home and being able to work at hours I set for myself. This may involve working around hot days, so I will start as early as 5am, through til 10am, and then resting during the heat of the day and coming back to my desk to work once it has cooled in the evenings
- Different communication methods with other team members if I am having a difficult day communicating.
- I also have specialised equipment, including a chair with gel cushioning specifically designed to help with overheating to help alleviate the issues caused by heat.
- Working with an MS Specific Occupational Therapist to assist in figuring out more techniques that will make my work life easier and keep me going for longer
I’ve also had to make some full lifestyle changes to better manage my symptoms and be able to enjoy my life. This has included, starting and maintaining exercise on a regular basis, daily mindfulness meditation and also fully changing my diet to something that I personally have found benefits me by increasing my energy and helping ease inflammation, although this does not always work for every patient.
Sometimes however even with all of these adjustments, this disease can get the better of me and I have had to find my own limits. Occasionally, I will be required to sleep in the shower to find comfort from my painful leg, or just take myself back to bed for a nap if my fatigue gets too strong. But I’ve been blessed to have such an accommodating workplace that allows me the time to work when I can with what I have available within me and has helped to remind me that I am not just this diagnosis and I am still able to have a fulfilling and enjoyable career for many years ahead.