Studying and being chronically ill: how do you manage that?
Third-year cultural anthropology student Claire van Helder (24) says she can't be kept still. She has her own blog, is active on Instagram and recently started a YouTube channel. She is a member of the student party LVS, elected to the faculty council and will become the president of WDO in September. And Claire has a chronic illness. What is it like to study while being sick? Claire tells us how she deals with it, what she encounters and what could be improved.
Claire has endometriosis, a chronic disease that causes endometrial-like tissue to grow in areas outside the uterus. This causes adhesions and can affect organ systems. Claire also has Hashimoto's disease, an autoimmune disorder in which the thyroid gland becomes inflamed and is unable to do its job. On her blog Bijzonder Autoimmuun Claire writes about her experiences of being ill, nutrition and lifestyle.
A maze to sort out possibilities
Claire has been studying for three years at Leiden University now and knows her way around. But combining a study with being chronically ill is not always easy. Before she started in Leiden, she studied fashion design in Arnhem. 'That was a real disaster. It was the period in which I became ill and there were no possibilities to shift courses or to slow down. My only option was to quit.' Claire heard that there were more possibilities at the university. Although things went better than in Arnhem, the beginning was still very confusing. Claire calls it a maze. Before she started her study she asked for an interview at the Fenestra Disability Centre in Plexus, but there she was referred to the study coordinator. The coordinator had to wait for the information from Plexus, but that never happened. Claire: 'It then feels like talking about what's going on doesn't make any sense. I didn't follow up on it myself anymore, because I found it very stressful. For me, things have to be clear straight away.'
Advice to Leiden University: make clear what is possible
Clarity about what is possible if you are going to study with a disability is very important for prospective students, according to Claire. Within the party LVS this is her spearhead. 'We would like to offer a kind of information package so that every student knows where to go, what to do and what the possibilities are. It would be great if the university would actually take that up. It is not ideal if every student has to email individually to ask about the possibilities, ideally those facilities would just be there as standard. On the website it is now difficult to find out what Fenestra actually is and what is possible. Only in a separate document 'protocol studying with a disability, the possibilities become really clear, it is not clearly stated online. Easy to find and insightful information about the group discussions they organise, the newsletter and membership would already help a lot.'
Tips for students: plan well, be specific about what you can and ask for help
Claire always keeps in mind that things can go wrong at the very last moment. That is why good planning is essential. Claire: 'I'm not constantly ill or in pain, but I could always suffer a bad day at the last moment. My most important tip to other students is therefore: to make sure you plan well. That way you can anticipate problems.' Claire also thinks it's important to indicate to lecturers and fellow students what you are capable of. 'In the beginning, I had trouble with that, but it has helped me a lot. You can lean on other people.' And the final tip: be on time with asking for help. 'Before you start your studies, make sure you know where you need to go and where you can arrange special facilities. As soon as the lectures and exams start, you're not thinking about that anymore. So be well prepared.'