Research through two lenses: I’m an MS researcher and someone living with MS

When I was diagnosed with MS nearly 10 years ago I wasn’t offered any type of professional psychological support. I spent the next few years trying to process it all in my own way. I’ve since come to learn from other people with MS that they go through exactly the same. This is what inspired my PhD research.

The challenges of PhD research

Doing a PhD is hard, even before you factor in my MS. It’s not as simple as just designing an intervention and getting it out there. There are lots of complex steps to go through.

My PhD looks at how people with MS use professional psychological support. I hope to better understand what kind of support people want, and how we can make it more easily accessible.

To do this, we bring together areas of different expertise. So, we involve other people with MS in shaping the research. We also involve other researchers and clinicians. There can be clashes in perspectives we have to resolve! And, balancing what’s practically possible with targeting the needs of as many people with MS as possible, is amongst the many challenges.

Dealing with uncertainty

I definitely have uncertainty about how my research will progress. My experience of MS does mean I’m more used to dealing with uncertainty but it’s really important I manage the stress this can cause. I find stress can make me more likely to have a relapse. And I obviously want to avoid that!

Read more about stress and anxiety

There’s a desperate need for psychological intervention to be made readily available to people with MS. I have to face double frustration, from both the patient and researcher perspective when it comes to the challenges of actually implementing something! But it also means I can empathise with the people taking part in my research.

Being part of two communities

My PhD gives me the opportunity to meet a really diverse bunch of people. It’s always an eye opener to speak with other people with MS and learn about their experiences.

It’s comforting to hear I’m not the only one facing the struggles I face. And I’ve learnt some invaluable tips to make those struggles more manageable. For example, a trick to remembering the 'safe place' you put important things is to take a picture of it! This is great for me as I struggle with cognitive difficulties.

Read more about cognitive problems in MS

I also feel privileged to be able to learn from other MS researchers, and clinicians. Not only is it helpful for my own research, but also for my personal understanding of living with MS. It’s really helpful to know what other research is going on at the moment and what services are available.

This has helped me get a better understanding of how my research can fit in with and add to what’s currently being explored. Particularly with online psychological interventions, which is my PhD topic.

Living with MS enhances my research, and the other way around

One thing I’ve struggled with is should I do my research through the lens of someone living with MS? Or should I look at this purely from a research perspective? Surely I could only do this through one lens, right?!

Sure, I have an understanding of what it's like to live with MS. But part of this is knowing that we all have different experiences. For example, we all experience different symptoms and they impact us in different ways. This means interventions need to be shaped with many people’s experiences in mind.

In the end, it hasn’t been necessary to separate research through the lens of someone with MS and an MS researcher. I gain so much from making use of both perspectives.

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