Accepting new and difficult life circumstances and learning how to take care of oneself are only some of the challenges presented by a chronic illness. At a time when one is left with many preoccupations and little energy, keeping a career going may become a formidable challenge. To Professor Michael Hyland (pictured left), who suffered from chronic fatigue syndrome (CFS) and has now recovered, becoming ill felt like "swimming up the stream with all the other fish" and finding it increasingly difficult to keep going. "Then [something] flaps you onto the bank, and all the fish go past you, and you think 'it's terrible, they are going to get there, and I am not'."
But rather than grinding to a halt, Hyland's career took an unforeseen yet welcome turn as other opportunities opened in front of him.
Hyland was diagnosed with CFS in 1998, just 2 years after he secured a professorship in health psychology at the University of Plymouth in the U.K. At the time, his research was on the management of respiratory diseases, and Hyland was involved in the development of several quality-of-life questionnaires for patients. Through his work Hyland knew what CFS was: a disabling fatigue that lasts 6 months or longer--sometimes much longer--and is usually diagnosed only after every other cause is ruled out. "I knew that it was an awful illness, and I was keen not to have it," he says. "But I was very well aware that it was [what I had]."
Worrying signs had been creeping into Highland's life for a while, but on his way back from a medical conference in Frankfurt, Germany, he realized that he could not ignore them any longer. "I tried to [fight] it for rather too long," he says. When he reached home that day, he was exhausted. "I completely collapsed and slept for three weeks," he says. This was the beginning of a long battle. "I was pretty badly disabled for one or two years, and there were three years before there were no symptoms."
Keep Going, a Few Paces Slower
Chronic fatigue syndrome is surrounded by controversy. "This is a disease where everyone has an opinion, [these] widely differ, and doctors' views are very different from patients' experience," says Hyland. Some scientists believe CFS is an immunological disease, while others argue for a neurological disorder. But since there is no consistent evidence for either, the theory that it is a psychological condition is also widely held, particularly in the U.K. Patients generally don't agree with this assessment. "Patients get upset because it is inconsistent with their experience," says Hyland. With CFS taking variable forms, there is no proven drug treatment to treat this condition, but lifestyle changes, mainly pacing oneself down, seem to be the key to successful recovery.
Hyland feels that for CFS patients "one of the biggest challenges is to keep doing [your work], because it is very unpleasant and you really do not like the job [anymore]." But with a combination of rest and effort, he held on to his. The summer term was just starting when he was diagnosed, which relieved him from teaching duties for a few months and allowed him to "do a little bit of work at home, and [then] gradually build it up over time." When the university resumed in October, Hyland was able to go back to work three days a week to teach his classes. "With CFS, you can limp in and do a bit. I had a fair teaching load then, and I just had to try and keep going." He also maintained his research output by doing a little bit at a time. He published only two papers a year compared to his usual 6 or 7, but he kept the quality high; indeed, he feels that the quality of the research he did then was better than what he had done before, despite his illness.
Still, based on his experience, Hyland advises CFS sufferers to rest more thoroughly, and much sooner, than he did, if they can. "You are not going to get better that quickly, so [take] 6 months off and then [work only] a couple of days a week," he says. If he had done this himself, he believes, he would have had a much quicker recovery. But for the workaholic like him, he says, it took a long time to learn how to rest. "I went to a conference being ill; everybody was waiting for a taxi, and I was dictating to my Dictaphone. I still hadn't learned my lesson."
Finding the Right Balance
The balance between looking after one's health and keeping one's career on track may be very difficult to strike with a chronic illness, and some contentions may arise at work. Hyland would advise sufferers "not to disclose to the whole system, just to your line managers and the people you interact with." But those line managers, he feels, are the people who make all the difference. "[My] first [line manager] was really supportive," he says. But the second manager started employment proceedings to review his contract because he was unable to attend the meetings his position demanded. "So I did attend the meetings." How you disclose it is also very important. "Present it like a problem-solving [situation]," he says.
Hyland believes it is crucial that CFS patients find an effective way to do their work and convince their institution that the outcome is what matters, not the hours worked or the way the work is done. This, he thinks, may be easier to do in an academic setting than a bureaucratic one. "Academia is usually focused on the outcome rather than the processes," he says.
New Opportunities Opening
"When I got ill, my [research] focus changed completely, and I continued with that," says Hyland. While he had initially trained in theoretical social psychology with a Ph.D. from Swansea University in the U.K., the work he was doing on respiratory diseases had so far been very much applied. It involved a lot of surveys and statistical studies, which he says were much more tedious to him than theoretical work. He believes this led him to work far too hard, and a lack of rest paved the way for his illness.
"I got ill because I was doing the wrong kind of research," he says. So he decided he would "combine his interests and work on new theories on health. CFS is theoretically a very interesting problem, which is [also] a practical issue." Being able to read and evaluate all the literature about the field as a scientist also allowed him to "find the best strategy to get better" as a patient.
With his new 'intelligent body theory' Hyland suggested that CFS develops mainly because of immunological challenges and lifestyle pressures. "Because of your lifestyle, you override your problems of tiredness, and that's how it develops," he says. Hyland is convinced he got CFS because of overwork, "which you tend to get with academic life." He recalls flying to a meeting for either his research or teaching about once a week, and he would not take his holidays. "It is not hard work that is the problem; it is the failure to take a rest," he believes. "I thought myself indestructible."
A Silver Lining to CFS
Dealing with CFS has been difficult, but Hyland believes the disease was positive for him because it led to a suitable research niche. It also helped him strike a better work-life balance. "I overworked; [now] I work better, and I am much happier as a result," he says. "Really CFS is a terrible illness, but I think I would be probably be dead now [if I hadn't had it.]"
"I think the inspiration with CFS is that you can get better, but you need to be careful and manage your lifestyle. Once you start, then you know that you are on the road [to recovery]. You have setbacks, but you do get there in the end. I feel that I am lucky to have recovered, and my message to those who haven't is 'don't give up hope'. You have to work at getting better."
More information on CFS
Note: If you think you may be suffering from CFS or another chronic disease, you should seek medical and professional advice immediately.