Whether I could work, how, how many hours, under what conditions, was a big concern for me in the early years of my studies. Just before I became sick, I saw the next few years as already completely mapped out: study, then start working. Quite natural at 15-16 years old. When the illness came on, quite suddenly and violently, I stopped planning. How could I envisage studying, and even more so working, if I remained in such a state?
And then finally, the situation improved, and I got through the difficult first years. When I started my studies, three years after becoming sick, I was not sure how I could work, even if I was doing better. Several steps were essential in my reflection and adjustment to working throughout my studies:
1. Doing internships, again and again
I admit that it is quite tiring, especially when you do an internship after an exam period. At the same time, I don’t regret doing internships every summer, in addition to a one-year internship between my bachelor’s and master’s degrees. Doing internships first of all made me realize that I could and would be able to work. Which was quite a relief, I must admit. Confronting the reality of the professional world, where the rhythm is quite different from that of the studies, helped me a lot to project myself and to envisage how I could work. I know that, depending on the disability or chronic illness, this is not always possible. But if you think you can do it, doing internships when you don’t know how you’ll be able to work with your chronic illness is a big help.
2. Identifying your specific needs
Indeed, if the internships were an opportunity to develop my professional experience and to practice my skills (but this is not specific to the disease), they were a very good opportunity to identify the specific needs related to the disease and to understand how and under what conditions I could work. While it was clear from the outset that I would have to work in a wheelchair-accessible place – difficult to do otherwise when you are sitting in a wheelchair – I realized that I would need to adjust the intensity of my working days to the fatigue of the moment. This would not prevent me from working full time, I would just need to take a break from time to time to rest as soon as the need arose. While doing internships, I also realized that home office should be part of the equation, that taking a taxi to work and back wouldn’t be a bad idea, and that working after 7pm was difficult because of fatigue. Nothing complicated in itself, but knowing it then helped me in my career choices and job search after graduation. A bonus of the internships, and not the least, was also to realise that if my needs were taken into account, I could also work full time if I wanted to. It was as simple as that.
3. Learning to express your needs, but not letting your disability define you
It is one thing to know your needs, it is another to express them clearly to your employer. And this is something I had difficulty doing. I had this fear that my disability and the few accommodations it required would be considered before the work I provided and the skills I brought, that I would be reduced to a quota that had to be filled (woman and disabled, not too bad in terms of diversity!). This was always more the case when I started a new internship/job and felt that I had not yet proven myself. I had this fear that I would be judged not capable of working, not up to the job because of those few extra parameters in the equation. But I learned to show that I had to take them into account, otherwise the equation would no longer balance. These few adjustments are what allow me to work the way I do.
Now I work full time and I really enjoy what I do. I am very grateful that I can work: Even though it is tiring – but working full time is also tiring for healthy people -, even though my symptoms are stronger, even though it takes up a lot of the reduced energy I have available, I am aware that I am lucky to be able to do it. Not all chronic illnesses or disabilities allow for this, or only partially. My symptoms, even if they remain, are such that I can afford to do it. For me, working is more than just my job. It is a way of proving to myself and to others that I can do it, that the disease and the resulting disability do not prevent me from doing it. It is also an opportunity to put to good use in the community what I have learned during my studies, but also because of my disease, which is also a real school of life.