I was diagnosed with multiple sclerosis three years ago

After 10 months of tingly arms and legs, a bout of optic neuritis, unexplained tiredness and brain fogs, as well as doubting my own sanity—I was finally diagnosed with MS (multiple sclerosis). Even though this was not entirely unexpected, it was still a shock and at the same time, a huge relief. My response turned out to be ‘full on research mode.’ I searched the web high and low for information and anything related to MS and funnily enough my parents did the same—must be a family trait. Probably for a good month or so, I was in a haze of information, feelings, uncertainties, insecurities, strength—or to put it bluntly, I was one big mess on the inside but very functional day-to-day. 

After my family and some close friends, my supervisor was the next person I told, mostly because she was there when I had no clue about what was going on and it just felt right to tell her. I also pretty quickly decided to tell HR because I wanted them to know in case things got worse unexpectedly. I recently came across this blog post from Heather on The Mighty. She also tweets as Dizzy the Donkey which is worth a follow. The first thing that struck me was that she decided not to tell people because of the fear of being judged. I had exactly the same fear of being judged or perceived as lazy, slacking or not working as hard, which was one of the reasons why I decided to be somewhat open at work about my MS diagnosis. I told close colleagues and office mates and others if it came up due to people noticing changes; most notably, I had to explain my new diet to my lunch club colleagues. This was followed by waves of “but if I admit that I have to change my working hours or ask for other adjustments, I would not be considered as good an academic.” I have never really been a 24/7 academic and always valued my weekends and time off but this was never visible at work. Now, with adjusted hours, 1 day a week working from home, and days where I looked like s**t, it’s a bit more obvious that I’m not 100% fit all the time. 

The first thing my supervisor told me was, “now you have a reason to take care of yourself,” which is kind of sad because we all should take care of ourselves in whatever form that happens. But for me, this means I have to be more sensible about how I plan my work, how I set deadlines, what activities I agree to, etc. To be fair, at the beginning that didn’t seem to be too big an issue. I agreed to work 1 day from home and adjust my hours as needed – on a good day, work a bit more; on a bad day leave, early. Outside of work, this meant changing my diet and exercise regime, as well as starting my day with a 10 minute stretch (which I actually manage most mornings).

It took a field trip in mid-February to realise that I have to treat a good day as a normal day and not work more. We went to a geological site that I was excited to show a visiting researcher from Brazil. I had been feeling great—diet and exercise seemed to be working, so off we went. The day was very cold and windy, and we ended up on site for 6 hours with only a break for lunch. That evening, I felt tired but not necessarily more than after similar days like this—however, I couldn’t get any heat in my legs. In hindsight, I now know this was a tell-tale sign that something was not right. I ended up off work for 2 days due to severe fatigue. Well done me! By Friday I started to feel better again and another week later I think I am fully back to “normal.” This was quite a big shock to my system and it really highlighted some other issues creeping up, particularly the realisation of “that’s it now—you have MS—life is not going to the same!” For a wee while it felt as if this meant life is also going to be rubbish. This, of course, is not true but at that time it felt like it. 

During these pretty s****y weeks of feeling super low, the counselling sessions really helped. These were offered to me from my employer after I told them about the diagnosis. It took me a while to go and I had to reach a low point, where I didn't know what else to do to get me to go. I had my first session on 8^th February, about 3 months after my diagnosis. I have now had 4 sessions. They have helped so much and I am glad that they were available to me from work because I had access quickly. HR set up the initial contact and told me to call them if and when I needed it—after calling them, I had an appointment 3 days later. Since I did pick up the phone at a low point, this quick access was so important because the first 3 weeks in February were particularly difficult and if I had not had counselling, it could probably have been a lot worse. Unfortunately, I have to say that this, together with an occupational health assessment and reasonable adjustments, is all that my university offered—tick box requirements. There is a disability service but this is aimed at students; there is access to assistive technology, but this is not widely advertised and again does not really help with the impact on mental health, feeling of belonging, and emotional aspects of a recent diagnosis. Through contacts, I found out that there is a type of peer support group but this was not publicised in a way such that I knew about it when I needed it. I also found out that we don’t have a working group for disabled or chronically ill staff or a representative on any working group related to staff. I don’t think this is ok and I want to make sure that members of staff that go through something similar in the future have these services available and are aware that they exist. This can only really happen through openness about my own diagnosis and a little bit of lobbying.

Through some existing connections at university, I should be able to get some of these things rolling and I’m hoping to get more involved. A key factor in deciding to be open and get more involved has been the Chronically Academic network. This was one of the first forums or networks I joined and I felt very welcome and supported.

Stephanie Zihms (@GeomechSteph) is a Lecturer in Researcher Development at the University of the West of Scotland (UWS). This story was published on May 14, 2017, on the blog Chronically Academic (available here), and has been republished here with permission.