How my MS experience shaped my research career

I could stand up and walk without losing balance and falling right back down again, and I was finally able to walk in a straight line without tripping over my feet. I could now string together an entire sentence without tripping over my tongue and I was finally able to feel the left side of my body again after 8 months or so. Diagnosis was a partial relief. Now I had a name for my cluster of symptoms I could receive treatment to prevent future physical deterioration (to some extent at least). Surely that meant all my problems were solved, right? Wrong!

Having a diagnosis was a means to relieve my physical symptoms but it only addressed a small part of the bigger picture. What about the fact that in the second that I received the diagnosis my life had suddenly taken a U-turn and become so uncertain? My physical symptoms had long since ceased but the psychological symptoms had only just begun.

As someone who is prone to catastrophizing in the face of adversity, naturally a diagnosis of an incurable illness with a very uncertain course was the worst thing that could happen to someone like me. At the age of 27 my life was at its peak. Full of energy I embraced family life with 3 children at the time and strove towards my career in the field of psychology, yet in that moment it felt like all of that had been stripped away from me.

‘How could I be a good mum when I would certainly wake up unable to walk tomorrow? How could I pursue a career when I would surely wake up blind tomorrow?’ I catastrophized.

And, so such thoughts continued for the first year or so at least.

To my surprise, given the disproportionately high rate of mental health problems reported in people with MS, I wasn’t offered any formal psychological support that day and even up until now, some 9 years on, I still haven’t. My neurologist did call in the MS nurse to sit in the room as I sobbed, mourning over my life that would be, but no words she could offer in that moment were going to make things any better.

Amongst the stack of books and leaflets I was given that day I recall glancing at a short paragraph in one of the leaflets about having sessions with a psychologist. However, at the time I felt lost and confused and unable to comprehend much. I was all over the place and so it got dismissed. Some weeks later when I had finally processed my situation a bit better, I thought to look for it again, but I didn’t find it and nor was I going to ask for it.

Having not really heard of MS before, I was finally ready to find out some more, and so I turned to the Internet in search of information. I ended up frightening myself more than anything. Fortunately, in my search I came across the likes of the MS Trust and various discussion forums, so I was finally in a place where I could get the kind of support that I needed; to be able to talk to other people like me who understood exactly what I was going through in a way that no one else could, not even my nearest and dearest. Support that has always proved invaluable to my psychological wellbeing to this day.

I’ve gotten familiar with my illness now so I’m comfortable to reach out if and when needed, and knowing that there are many options if necessary provides ongoing psychological relief. I’m only sad that I didn’t know what my options were when I needed it the most, and that others are probably going through exactly the same experience at the point of diagnosis and the months following it. I’m also sad that I had to be the one to look for what options and resources were available to me. Perhaps if it had been offered to me, I would’ve taken it and the process of adjustment would have been a lot quicker and easier.

Fast forward 9 years - now I don’t feel like I need the same kind of support I once did. My needs have changed in line with my illness. I know who to turn to if I need support, and knowing that people are there if I need them is what keeps my psychological wellbeing in check. This has been a snippet of my experience of psychological support throughout the trajectory of my illness. My experience is what fuels my passion to understand and improve psychological support options for other people with MS.