S4E28 10 minutes with George Jelinek: Defining ‘overcoming’ MS and ‘recovery’

(4:06) “My own health started to more than stabilize. And that was a surprise to me. In that I started to not only not deteriorate, but I started to feel better than I did before.”

For us as a charity, “Overcoming MS” means living a full and happy life after a diagnosis. Although there is currently no cure, depending on your starting point, the Overcoming MS program may lead to improvements in your physical and mental health, reducing the impact of your MS symptoms, slowing or preventing its progression. Some people recover function and, most importantly, you can lead a full and happy life with MS.

(7:10) “I’d say I’m recovering from MS. [But] it’s a process, not an outcome. In my view, we’re not looking for a final destination. In life, the only final destination is death. I’m not trying to get somewhere, it’s the process of how I’m living every day that constitutes recovering from MS.”

For us as a charity, we look at a range of uses of the word recovery: recovering lost function, recovering mental strength and recovering quality of life. These different outcomes are possible depending on your starting point and personal situation. 

(9:00) “A cure has never been part of this. It would be ridiculous to say that living a really healthy life like this cures MS. Because I know if I was to return to my former bad habits, that there’d be every chance that I’d get a flare up of some sort.”

Geoff Allix   

Welcome back to the third edition of 10 minutes with Georgia. Welcome, George Jellinek.  

 George Jelinek   

Thanks, Geoff.  

 Geoff Allix   

So to start off with today, there’s a few words that come up. And these get mentioned sometimes in the OMS program. So the words recovery and overcoming mean different things to different people. So could you start by talking us through your decision to move from “taking control of MS,” the first you use to “recovery program” and the terms “overcoming” as well? What do they mean to you? 

George Jelinek   

Yeah, like that is a really good question. And I know it tends to sometimes concern people that we use the word “recovery” in relation to what everyone describes as an incurable progressive disease. But I guess in some ways, the change in that emphasis reflected my own journey through the program. So I have to say, when I first came across all the science that I came across and started putting it together into the program, my goal really was to slow down the deterioration, so to get a sense of control over that process, and taking control sounded perfectly apt thing, a perfectly apt term for that. And then within, I think, three years of diagnosed I started running the retreats. And I had a couple of very good mentors in that process, who I’m forever grateful to. But as I ran more of the retreats and started to see the changes that were happening in people over the course of that weekend, and the changes I was getting, I mean, one thing I’ve been very grateful for is that I’ve run probably 60 retreats in my life, and most people have only been to one or two, sometimes three. So I’ve had that sort of incremental benefit of all those experiences amplified through frequent exposure, my own health started to more than stabilize. And that was a surprise to me. In that I started to, to not only not deteriorate, but I started to feel better than I did before. And I actually remember very well, the conversation with my publisher, when I moved from “taking control” to the new book to the “Overcoming MS” book in 2010. And she said, “well, it sounds like you want to change the title from taking control.” And I changed publishers to get there. So she wanted something new. And she said, “What about ‘Coping with MS?'” And I just thought, no, no, that doesn’t just, it just doesn’t reflect anything like what I’m going through. So what about “Managing MS?” While again, that sort of just keeping your head above water, kind of idea. But still drowning, if you know what I mean. And I’ve just sort of blurted out, Overcoming MS seems more appropriate to me, because that really reflected what it felt like in my life that that I was starting to actually get better. Better than I had been before I was diagnosed. And that that sort of led on to that whole notion of recovery. That while we know it’s an incurable illness, we know there’s no cure, we don’t offer a cure. For people who rigorously adhere to this program, it really changed their lives. Isn’t it reasonable to sort of talk about the notion of recovery? I mean, we talk about recovery from heart disease or from a number of other chronic Western diseases, like MS. Why wouldn’t we use it for MS even though it still depends on living a very healthy life and following all the best advice on how to eat and how to exercise and so on. So I coined the term recovery really, almost deliberately on the cover of that that book, the evidence based recovery program, to challenge that notion, in a sense that deterioration was inevitable. While recovery is not going to be the outcome everyone gets, deterioration needn’t be the outcome everyone gets either as they have in the past. That it’s possible actually to not only live well, to be healthy, but to be better than you were before you were diagnosed in terms of your health, and that’s where I’ve ended up 

Geoff Allix   

So would you say that you’re, you’ve recovered from MS or you’re in recovery? 

George Jelinek   

I try to use the word, the verb like I do in the books, you know, overcoming MS, recovering from MS. Other titles, and I’d say I’m recovering from MS. It’s a process, not an outcome. In my view, we’re not looking for a final destination. I mean, in life, the only final destination is death. You know, I’m not trying to get somewhere, it’s the process of how I’m living every day that constitutes recovering from MS. 

Geoff Allix   

And that element, I guess that you’re you can’t stop, you haven’t, like, you haven’t taken a tablet that’s cured you and then you can go back to how you were 20 years ago, you’re saying, well, this, I’m still on the process. And if I, if I stop, then equally, but your condition could get worse.” 

George Jelinek   

That’s right, then would I want to go back to where I was 20 years ago? I don’t think I would. 

Geoff Allix   

And how is the reality of overcoming MS different for different people? 

George Jelinek   

I think people can choose the terms that best suit their own lives and their own journeys. For some that will, overcoming will seem like a perfect fit for some recovering well. For some taking control will and still for others, there may be a sense that that stabilizing things is the way they’d like to frame it. I try not to be too prescriptive around those terms. Everyone’s journey is different. And everyone has the, can choose whatever that however they want to describe it to their family and friends and wider circle. 

Geoff Allix   

Yeah, I mean, I think the key thing is, you’re not a snake oil salesman who’s promoting a miracle cure. 

George Jelinek   

A cure has never been part of this. You know, it would be ridiculous to say that, that living a really healthy life like this cures MS. Because I know if I was to return to my former bad habits, that there’d be every chance that I’d get a flare up of some sort. So I think I’m grateful to have discovered what I did to apply it my life to see a lot of other people applying it in their lives. But it’s a process still. Living well, it’s a process recovering’s a process, overcoming’s a process. And that is a really good way to live life. I just really enjoy living life like this. It’s so much more satisfying, and in fact more interesting than it was when I was living in sort of a conventional way: very stressed and eating very bad food and rushing around the way I was. 

Geoff Allix   

Thank you for that. And thanks for joining us on the latest edition of ten minutes with George 

George Jelinek   

Thanks Geoff