Living with a chronic illness provides many opportunities for your loved ones (and relative strangers) to tell you about the latest *new treatment*. Often there are TV programmes, or newspaper articles that said family might tell you about or show you. It’s possible that friends may know someone who has had this breakthrough treatment. Believe me when I say I wholeheartedly hope each an every time. In fact I feel sure that the friend’s friend who had the treatment, is probably going to be one of the lucky ones. That she will probably be cured. There’s a small voice in my head that says – “see, she was brave enough to take the drug / treatment…now look. She’s benefitting now isn’t she!”. Panic sets in…
When I was diagnosed with relapsing remitting MS in 2012 the doctors and I were happy to take a ‘watch and wait’ approach. They watched and I waited…for about a nanosecond and then got on with all the things I could do to change my lifestyle and diet to one that maximised my chances of recovery and a healthy life with MS. I have talked at length in previous posts about how I follow the Overcoming MS lifestyle approach promoted by Prof George Jelinek, which drew on the work of US physician Roy Swank among other research. It made no intuitive sense at all for me to take a drug with nasty side effects when I didn’t seem to be experiencing rapid relapses and my symptoms were improving month on month. I threw myself into my lifestyle. Vegan diet – check. Vitamin D supplement – check. Omega 3 supplements – check. Exercise – check. Mindful meditation – Ommm….check. I began trying to live an all round less stressful and more healthy life. And. It. Felt. Good. I. Did. Not. Relapse.
BUT. Anyone living with a chronic illness knows never, EVER, to feel smug. Life with a chronic illness or disorder, such as MS means that coping with the uncertainty that these types of diagnosis brings is perhaps the biggest adjustment that is required and its role in chronic illness is widely recognised (Davis 1960, Wiener 1975). The individual is often left to cope with a lack of certainty regarding cause (“we just don’t know why you have got it..”), progression (“we just can’t say at this stage if or how this will progress…”) and effective treatments (“we’re working on them…”). Left asking how this will affect my life, employment and social roles? As a parent, spouse or employee? How will I cope; emotionally? Financially? The limits of medical knowledge and treatments becomes apparent with a growing realisation that many are less than effective and may have multiple side effects. Uncertainty is an uninvited guest at your dinner table, and like it or not, he is here to stay.
BUT I was well. So I felt in control. I felt that the way I was living was controlling my symptoms. The progressions. As best it could. And I still do very much believe that. This meant I did not have to work through the issues I had about potentially requiring medical intervention. Needing a drug treatment. To me, that presented defeat. It meant I really *was* an ill person. I really did have a *progressive* neurological disorder (key word here – *progressive*). My day-to-day did not suggest that anything was progressing. Yes, my life was progressing but in a good way. I was progressively becoming more fit. More healthy. My symptoms were progressively improving.
Fast forward to 2015 and the headlines were well, headlines. Apparently new research was apparently now suggesting that watching and waiting was not the right thing. That an early, aggressive approach using drugs, was required in the first few years after diagnosis to maximise the chances of recovery. To minimise demyelination. Furthermore, leading MS charities and patient groups were then suggesting we requested regular MRI scans to track the progression (or lack?) of demyelination. All of the above triggered a massive WTF? Not only had I not had an MRI scan since being diagnosed, but I was clearly out that “early” response period. That voice in my head fired up loudly. “you really did miss the boat there…”. “Such a shame that you missed that window of opportunity for your treatment. Now you’re really screwed”. “They did tell you it was the ‘invisible illness’. That damage could be done without necessarily experiencing symptoms…tut tut”.
When I looked deeper into this research, there were far more caveats and disclaimers than the headlines first suggested. This research seemed to me to be particularly relevant to people who had rapidly relapsing MS, or who were progressing quickly, early on after diagnosis. There also seemed to be a group of people to whom this did not apply, in particular people whose symptoms had resolved or who may have experienced a clinically isolated episode.
After a while I realised I had gone full circle. I was left at no 1. Uncertainty St. I kept knocking on the door but no-one was home. I wasn’t entirely sure if this research applied to me. Which treatments were they talking about? Was that different to the one in The Observer last week that my mother in-law cut out for me…
What I am sure of is that there is amazing research happening all the time. I know that big Pharma and drug companies are not that interested in many of the promising treatment such as bone marrow and stem cell transplantation, because they aren’t *new*treatments and as such present them with no opportunity to patent new drugs. There’s no money in it for them. I know the breakthroughs will probably be made by under funded and under appreciated academic institutes, at a slower pace than they would be if they had the funding they needed.
Finally, I want to say that I do want to know about the friend who had the treatment, I really do. I want to know about the latest research. That’s not the point. My eyes and ears are open to the uncertainty AND the stories of hope. But the headlines remind me that managing the uncertainty my uninvited guest brings is an ongoing task, and while there is so much uncertainty I will try to focus on what is certain. I am certain that the changes I have made to my life have improved both my symptoms and my happiness. So I will choose to focus on that, even when the headlines make that hard.