Measuring success
By Ingebjørg Midsem Dahl
”You, like many others will succeed in the end.” These words, at the end of the book ”Somebody help ME”, have brought hope to many newly diagnosed people with ME over the years. So have the words ”Normality is waiting around the corner for you all”, which appeared earlier in the book. But what about those kids for whom normality wasn’t waiting around the corner? Many young people with ME have, like myself, fought for 10, 15 or even 20 years without ever being close to recovery – the goal we all aim for. Does that make us failures? As a long-timer, it’s easy to end up blaming yourself for your lack of recovery, so let’s start off with the hardest question of them all: Is it really our fault that we haven’t recovered?
At the AYME conference in 1999, Dr. Nigel Speight said quite directly that no, it’s not people’s own fault when they don’t recover. He says that he has patients who have tried all the alternative therapies, and have done exactly what the kids who recovered did and who still remain very ill. Dr. Speight also said that the young people who don’t recover mustn’t be judged for it. That means that we mustn’t judge ourselves either.
In case you’re wondering, our non-recovery has nothing to do with our emotional state. Dr. David Bell once did a study where he looked at emotional coping styles in children with ME. He discovered that kids who don’t cope very well emotionally recover just as often as those who cope really well. This shows quite plainly that positive thinking makes us happier, but it certainly doesn’t cure us. In other words, emotional coping is one thing which we longtimers don’t need to feel guilty about.
Then there’s pacing. In terms of guilt, that’s a difficult one. Because the limits we have to stay within aren’t visible. We’re left forever wondering whether we’re pacing ourselves well enough. It’s also very easy for others to judge us. I don’t know about you, but I’ve always found it difficult to read about people who paced themselves well and recovered. Actually, pacing is what has enabled me to have a life during the last 21 years with ME. It’s given me some control over the illness, it’s made me stable and I’ve often had slow improvement. At the moment it’s pulling me out of the worst relapse I’ve ever had. However, despite good pacing I’ve never been above 70 %.
When I first began reading recovery stories, I felt like a complete failure. I thought that the kids who recovered had paced themselves a lot better than I had. I ended up thinking that it was all my own fault that I was still ill. But, on closer scrutiny, those stories revealed that some of the kids who recovered had seemingly made worse mistakes than I had made. Others seemed to have hit the right balance by sheer coincidence. Some people had been mildly affected during most of their illness, yet admitted that they weren’t very good at pacing themselves, and their stories usually confirmed this. Given how vigorously I have had to pace myself in order to reach 70%, this made it very clear to me that those people were simply less ill than I was.
Confusingly though, ability level does not appear to be the only marker of severity. We’ve all heard of people who were extremely ill at onset, but who then went on to recover uneventfully within a couple of years. On the other hand, I know lots of people who’ve never really been severely affected, but who still have remained ill for ages without ever showing signs of recovery. In their cases, other factors such as infections or vaccinations at an unfortunate time, lack of adequate help and so on, may be the reason why they still haven’t recovered. So severity is also a matter of having a stubborn variety of the disease.
All this made me realise that it wasn’t a question of those who recovered being better at pacing themselves, or better at emotional coping, or simply better people. Those who recover are simply less ill than those who don’t recover. In the talk previously mentioned, Dr. Nigel Speight confirmed this by saying that pacing is management, not treatment. Although pacing can make us better, it can’t cure us.
So where does this leave us? We’ve learned to have fun between rest breaks. We’ve learned how to cope emotionally. We’ve grieved and moved on through one relapse after another. We’ve fought stupid doctors and family members. We’ve informed friends and perhaps even the press. We’ve learned how to pace ourselves, we’ve become strong, and we have found too, at least some degree of confidence. Many of us have completed some degree of education, but even if we’ve been too ill to do so, our experience of having ME has taught us so much that we’ve long since overtaken our friends in terms of wisdom and maturity. Many of us have found the courage to be openly different, for instance by using a wheelchair. We’ve overcome the disillusionment and are learning to see the possibilities we do have within our limitations. And we have also discovered that all of the above can be improved on further, as we go. Above all, we have found out how to be ourselves despite having ME. And this has enabled us to have reasonably good lives despite the illness. With all that, how could we ever be failures?
OK, so we haven’t reached our goal of full recovery, but remember, physical health implies neither happiness nor peace of mind. There are many unhappy healthy people. Having ME has taught us how to tackle the ups and downs that life is all about. It has taught us, too, what darkness is, but it has also enabled us to recognise and appreciate the light when it’s there. This, in turn, makes it possible for us to reach happiness and peace of mind, in spite of illness. If we can reach that point, we are truly among life’s winners. Most of us feel that we haven’t quite reached the point of happiness and peace of mind yet, but don’t worry. The wisdom and maturity we’ve gained while having ME will enable us to reach that point a lot faster than we otherwise would have. Take heart. You, like many others, will succeed in the end. Good luck and keep smiling.
At the AYME conference in 1999, Dr. Nigel Speight said quite directly that no, it’s not people’s own fault when they don’t recover. He says that he has patients who have tried all the alternative therapies, and have done exactly what the kids who recovered did and who still remain very ill. Dr. Speight also said that the young people who don’t recover mustn’t be judged for it. That means that we mustn’t judge ourselves either.
In case you’re wondering, our non-recovery has nothing to do with our emotional state. Dr. David Bell once did a study where he looked at emotional coping styles in children with ME. He discovered that kids who don’t cope very well emotionally recover just as often as those who cope really well. This shows quite plainly that positive thinking makes us happier, but it certainly doesn’t cure us. In other words, emotional coping is one thing which we longtimers don’t need to feel guilty about.
Then there’s pacing. In terms of guilt, that’s a difficult one. Because the limits we have to stay within aren’t visible. We’re left forever wondering whether we’re pacing ourselves well enough. It’s also very easy for others to judge us. I don’t know about you, but I’ve always found it difficult to read about people who paced themselves well and recovered. Actually, pacing is what has enabled me to have a life during the last 21 years with ME. It’s given me some control over the illness, it’s made me stable and I’ve often had slow improvement. At the moment it’s pulling me out of the worst relapse I’ve ever had. However, despite good pacing I’ve never been above 70 %.
When I first began reading recovery stories, I felt like a complete failure. I thought that the kids who recovered had paced themselves a lot better than I had. I ended up thinking that it was all my own fault that I was still ill. But, on closer scrutiny, those stories revealed that some of the kids who recovered had seemingly made worse mistakes than I had made. Others seemed to have hit the right balance by sheer coincidence. Some people had been mildly affected during most of their illness, yet admitted that they weren’t very good at pacing themselves, and their stories usually confirmed this. Given how vigorously I have had to pace myself in order to reach 70%, this made it very clear to me that those people were simply less ill than I was.
Confusingly though, ability level does not appear to be the only marker of severity. We’ve all heard of people who were extremely ill at onset, but who then went on to recover uneventfully within a couple of years. On the other hand, I know lots of people who’ve never really been severely affected, but who still have remained ill for ages without ever showing signs of recovery. In their cases, other factors such as infections or vaccinations at an unfortunate time, lack of adequate help and so on, may be the reason why they still haven’t recovered. So severity is also a matter of having a stubborn variety of the disease.
All this made me realise that it wasn’t a question of those who recovered being better at pacing themselves, or better at emotional coping, or simply better people. Those who recover are simply less ill than those who don’t recover. In the talk previously mentioned, Dr. Nigel Speight confirmed this by saying that pacing is management, not treatment. Although pacing can make us better, it can’t cure us.
So where does this leave us? We’ve learned to have fun between rest breaks. We’ve learned how to cope emotionally. We’ve grieved and moved on through one relapse after another. We’ve fought stupid doctors and family members. We’ve informed friends and perhaps even the press. We’ve learned how to pace ourselves, we’ve become strong, and we have found too, at least some degree of confidence. Many of us have completed some degree of education, but even if we’ve been too ill to do so, our experience of having ME has taught us so much that we’ve long since overtaken our friends in terms of wisdom and maturity. Many of us have found the courage to be openly different, for instance by using a wheelchair. We’ve overcome the disillusionment and are learning to see the possibilities we do have within our limitations. And we have also discovered that all of the above can be improved on further, as we go. Above all, we have found out how to be ourselves despite having ME. And this has enabled us to have reasonably good lives despite the illness. With all that, how could we ever be failures?
OK, so we haven’t reached our goal of full recovery, but remember, physical health implies neither happiness nor peace of mind. There are many unhappy healthy people. Having ME has taught us how to tackle the ups and downs that life is all about. It has taught us, too, what darkness is, but it has also enabled us to recognise and appreciate the light when it’s there. This, in turn, makes it possible for us to reach happiness and peace of mind, in spite of illness. If we can reach that point, we are truly among life’s winners. Most of us feel that we haven’t quite reached the point of happiness and peace of mind yet, but don’t worry. The wisdom and maturity we’ve gained while having ME will enable us to reach that point a lot faster than we otherwise would have. Take heart. You, like many others, will succeed in the end. Good luck and keep smiling.
