From Lectures to Lupus Flares: A Guide to Balancing University Life
By Abigail Mostert
Being a university student has its challenges. Throw a lupus diagnosis into the equation and these challenges can suddenly feel insurmountable. Living with lupus, a chronic autoimmune condition, can create an element of unpredictability in your life. Whether it comes in the form of flares, fatigue or brain fog, lupus requires you to be prepared to manage your symptoms along with life’s daily challenges. Navigating the university context might just be one of those challenges; preparing yourself to navigate it with lupus starts with equipping yourself with the right knowledge and tools.
Understanding Disability & Ableism in Higher Education
Despite efforts towards transformation 1, there is still significant stigma surrounding disability in higher education. This stigmatisation is often twofold: recognition of the inclusive diversity of disabled people and disability-related language use. The Department of Higher Education and Training defines a disability as an individual “…having physical, sensory, psychological, developmental, learning, neurological or other impairments, which may be permanent, temporary or episodic in nature, thereby causing activity limitations and participation restriction…”.
Overtime, disability has become an evolving concept that recognises impairments which may not be overtly visible. This recognition of the inclusive diversity of disabled people is however, often limited to a policy level and therefore, does not manifest into practice. Lupus, often referred to as an invisible illness 2, is an example of a disability which is not overtly visible. It can be challenging for others to see the manifestations of lupus, such as pain, fatigue or brain fog, but it is still happening and causing impairment.
When thinking about language use, disabled should not be considered as a “bad” word and many believe that its continued stigmatisation contributes towards ableism. This is seen in the use of dressed-up language of “differently-abled” or “specially-abled” as opposed to “a disabled person”. Ableism is a set of practices, attitudes or policies, intentional or not, which favours the needs of non-disabled people.
Although often unintentional in the university context, ableism is structurally embedded with the intention to produce high-achieving, elite graduates. Institutions gain both financial and reputational incentives from these graduates- as is required in our capitalist political economy. However, it is the students with disabilities who remain responsible for navigating these deep rooted ableist practices3. This often involves expensive medical verification of a disability through tedious documentation, unwarranted disclosure and “proving” of a disability, and requesting and motivating for basic accommodations to ensure access and accessibility 4.
Although many people with lupus struggle with its invisible nature and what others may perceive of them since they do not outwardly “appear” ill, it is important that you ask for help when you need it. A balanced university life will require you to ask for help from time to time- from friends, roommates, parents or partners. It is fundamental that you realise it is okay not to do it all alone and accept help where offered.
Practical tips to equip you for university life with lupus
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Institutional Disability & Social Support Services
Higher Education Institutions are required to provide a form of a disability program, unit or social services to students. These offices function to promote access5 for students with disabilities as well as ensure accessibility 6. They are also your point of contact for any challenges you may have with specific modules that you are unable to resolve with the lecturer or course convenor.
These spaces should also be able to assist you with resources for writing concessions, scribes or assistive technology. These resources can be particularly helpful if you experience auditory or neurological processing difficulties or struggle with writing due to joint pain. The following links provide information some of the programs at South African Universities: The University of Cape Town – The Office for Inclusivity & Change; The University of Johannesburg – Disability Unit; Stellenbosch University – Disability Unit; University of the Western Cape – Disability Services; Nelson Mandela University – Universal Accessibility & Disability Services; University of Free State – CUADS
Regardless of where you obtain your healthcare, lupus is an expensive disease. Whether it is extra medication, creams or medical treatment itself, the financial burden can be overwhelming. Financial assistance contributes towards your student fees, transportation costs and living expenses. You should not have to choose between your health and your education. Depending on your other financial criteria, there are a range of funding options you can pursue, such as the National Student Financial Aid Scheme.
Your respective institution may also offer private funding opportunities. These could be through alumni, work-study or discretionary funding programs. Visit your campus financial administrative building to ask about these.
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Modules, Lecturers, & Deadlines
At the start of your modules, contact your lecturer or course convenor to inform about your chronic illness. Since we know that lupus is unpredictable, letting them know ahead of time will help in case you do end up needing any extensions. It is your choice to disclose the specifics of your condition and according to policy, it is not required of you to disclose such information.
Don’t be afraid to reach out to a tutor, lecturer or convenor if you are struggling with course content or keeping up with the pace thereof. Remember, it is okay to ask for help.
Drinking and going out can form a large part of university culture. Drinking alcohol with your lupus medication can be very dangerous. You should always refer to the instructions of your doctor. However, this doesn’t mean that you can’t go out and have fun. Try out some mocktails and swop the heels for some sensible shoes. Fun is also a fundamental part of student life!
Universities also have a range of clubs and societies with just about every sport, culture and social activity one can think of. If you tend towards social isolation, try signing up for a club. These are low-commitment ways to connect with others through an activity fitted to your mobility. Look out for support groups too- these may be run through the psychology department or the university’s student counselling centre.
Support groups, and social support more broadly, can also be found outside of the university space. Andrea’s Gift Foundation, in collaboration with Lupus South Africa, provides a range of support services for those with lupus. Recognising the specificity of the experience young lupus warriors face, Andrea’s Gift is set to launch their new online support group The Twenties Edition. For more information, have a look at their social media.
Perhaps the most important thing to remember: You cannot outwork lupus; but it can outwork you. There are often days when I wish I could give more of myself – read a little more or write just a few more paragraphs. But as the brain fog drifts over, the fatigue sets in and every bone in me aches, I have had to learn that while deadlines can be reset, we do only have this one body. Caring for your mental, physical and emotional well-being must remain a priority.
Life with lupus at university may look a little different to those around you. Create your own pathway and remember to accept help along the way.
Abigail Mostert is a postgraduate student pursuing her master’s degree in Sociology at Stellenbosch University. Connect with Abigail on LinkedIn: http://www.linkedin.com/in/abigail-mostert-sociologist
References
1. See Manase, N. 2025. Postcolonial Perspectives on Disability Management At South African Universities; Walker, J. G. 2025. Analysing disability Support at South African public Universities.
2. See Brennan, K.A.M., Creaven, AM. 2016. Living with invisible illness: social support experiences of individuals with systemic lupus erythematosus.
3. See Ramaahlo, M. 2021. Dis/abling Higher Education in South Africa; Mutanga & Walker (2017) Exploration of the academic lives of students with disabilities at South African universities.
4. See Goodall et al. 2016. “Breaking a vicious cycle”: The reproduction of ableism in higher education and its impact on students with disabilities
5. A right for persons with disabilities to participate equally in ways that are not constrained by physical or mental limitations (Department of Higher Education & Training)
6. Encompasses both infrastructural accessibility as well as information accessibility (Department of Higher Education & Training)