New year, same body: Going back to school, uni and work after the holidays

A few years ago, I received my first chronic illness diagnosis. It was an unwelcome gift, happening only three weeks before my 22nd birthday. Like many in our community, my relief was bittersweet. I remember feeling crushed at the news that I would have to manage my invisible disability for the rest of my life. The gradual rollercoaster of chronic pain, fatigue, and other symptoms was gaining speed.

I rapidly became apprehensive about how I was going to manage this alongside studying to become a journalist. How do I juggle university assessments and developing a writing portfolio in a body that is frequently worn out, painful and difficult to wrangle? I knew that achieving goals and trying to live a fulfilling life would take some adjusting.

In 2022, I made the decision to transition into part time study. This has allowed me to balance my workload between university, occasional writing opportunities and managing my health. Recently, I have also been trying to forge my career in freelance journalism. Although it is rewarding, this has not been without difficulty. 

As a card-carrying member of the disabled and neurodivergent club, I empathise that returning to tertiary education, school or work after a break can be tricky. Here’s what I  wish I knew when I was recently diagnosed and trying to figure things out. I hope these tips also help you to cope better in this stage of life.

• If you are studying, reach out to your tertiary provider’s disability support office. Generally, you will need to provide medical documentation and a description of how your condition affects you. Then an advisor will organise a formal accommodation plan with you and they can help to advocate for your access needs. This could include a notetaker during lectures, having extra time to complete exams or a mobility car park on campus.
• Create a menu of low, mid, or high energy routines that allow for fluctuations in your schedule, ability, energy, and productivity levels. Establish an accountability partner for brief check-ins if you struggle with time management when you are working on projects. This can be a work colleague, mentor, trusted friend or partner. Be mindful of their time and what they have going on when you approach them for this. Alternatively, see if you can work in a space with other people. They don’t have to interact with you, but this can sometimes work as motivation for you to be productive when you need to get tasks done. Suitable spaces for this include a shared office, library, university common area or cafe.
• Externalise everything regarding projects, assessments and deadlines in digital or paper form. This makes it easier to keep track of your work and allocate rest time where possible. Two of my disabilities cause cognitive dysfunction and working memory difficulties, so having an external log of deadlines and tasks is better than relying on my brain to remember everything that is required for completing the work.
• Set advance deadline reminders - for example due in three weeks, two weeks, one week - from the exact day. This will help you to be aware of how much time you have left to complete the work and plan accordingly. You can set digital reminders on your phone or have sticky notes somewhere where you will see them regularly - like on a wall planner or your bedroom door.
• Trial a pacing technique referred to as a No Zero Day, which is recommended by journalist and chronic illness blogger Natasha Lipman. This is where you list different kinds of activities that are doable on your best days; the days where you have the most energy and physical and mental ability. Then you assess whether you can break the task down so a smaller amount can be done on more challenging days. It helps to prevent peaks and troughs by maintaining flexible capability. That way you’re not going from zero to a hundred, crashing and then having to regain your energy.

• Some examples of activities that you could break down into smaller tasks include: cleaning, cooking, meal prep, exercise or gentle movement, projects or assignments. I will try and do at least one thing for my journalism stories most days, such as transcribing an interview, doing some background research, or small chunks of writing. This gradually chips away at the project, while also helping to mitigate symptom flare-ups where I am less capable of working.
• Create a daily or weekly log of your symptoms, the types of tasks that you were able to manage, and any strategies you used to help mitigate issues. This will help you to identify good workflow patterns and what helped you to achieve this. It can also be useful for evaluating areas that need gentle improvement.
• Try to promote brief breaks from your work for gentle movement or stretches, enjoying a snack or drink, or stimming and self-soothing exercises. This can help you to stay regulated and also give your eyes time out from looking at screens.
• Gradually build up habits that promote good sleep and rest patterns over time. For disabled or chronically ill people, it’s so important to get as much rest as you can to prevent symptom flare-ups or burning out. This can look like engaging in activities that require less energy and involvement close to bedtime. You may also want to prepare your clothing, lunch, medications, comfort tools or other items ready for tomorrow. This will give you peace of mind that you can start your day more gently and you don’t have to rush to organise things. 

In my personal experience, learning to balance study or work alongside disabilities is a non-linear process. It isn’t always easy and sometimes your productivity or achievements will look different from non-disabled people. That doesn’t undermine or devalue what you can complete successfully. It is possible to redefine what success means for you. By cultivating more strategies and resilience, you will better cope with difficulties over time. Any effort that you are able to put into something matters, even if that fluctuates throughout the year. Whether it be going back to uni or starting a new job, I wish you all the best for 2024.