By Rachel Horne
The invitation came a year ago from University College London Hospitals. Would I be interested in being part of a film that looked at how research impacts people with MS?
I’d been in a few of these over the years. A morning filming, a few questions posed to the experts, some vigorous on-camera nodding – and by the afternoon I’d be on my way.
Then I looked at the schedule. It would stretch over weeks, involve reviewing the latest MS research followed by hours of discussions. And this was all before any filming started. (Disclosure: I was paid).
This approach was deliberate. Both Rosamund Yu from UCLH and the director Ieva Padagaite were keen to make a film that was truly collaborative. This meant involving the four of us with MS – Natalie Kanji, Robby Khullar, Suk Atwal and myself – in every step of the production: from supplying interview questions to signing off on the editing.
So I agreed. So often people with MS are hit with a double whammy: their disease makes them feel out of control – and they often feel they don’t have a voice when it comes to their treatment or their interests. Here was our chance to speak.
And we did. We spent hours talking – with MS as the common thread. Between Natalie, Robby, Suk and I – it turns out we have lived with the disease for more than 68 years. Although this might sound grim, it wasn’t. Instead it made the conversation between us effortless. No need to explain cog-fog, the difference between feeling tired and MS fatigue or why there is nothing remotely romantic about an MS hug.
It also meant that by the time we were in front of the camera, we were all very comfortable with each other – and candid. So Robby could say: “When I was first diagnosed I often wet myself in public. But the thing is – the drug I am on right now controls my bladder. It has given me my life back actually.”
Last week, we saw the finished product – and were all thrilled. Natalie found it very motivational. “You see the four of with MS including two of us who use wheelchairs – and we are all having a great time. Life doesn’t finish with MS.”
For Robby, the strength of the film was that it “let people with MS know they are not alone and there is so
much effort going on behind them.” As for Suk: “The film succeeded in showing the human side of research and at the same time bridging the gap between scientists and patients.”
And me? I think the film demonstrates just how important clinical research has been in improving the quality of our MS lives. It’s so easy to forget that the management of the disease has been the neurological success story of the past 25 years.
Of course, there are still major hurdles. Researchers will be the first to tell us that. We don’t have a cure. We don’t know how to reverse MS’s insidious damage. We don’t even know what causes the disease.
But we have choices now in our treatments – and we have hope.
Rachel Horne is a journalist who has MS