I have mentioned before that one of the most pervasive symptoms of my chronic illness is a form of cognitive dysfunction that makes it difficult to concentrate for sustained periods of time. Of all the neurological, immunological and metabolic symptoms, these cognitive issues are by far the most frustrating. Physical pain and disability would be easier to live with if I could distract myself with creative and cerebral pursuits, but on my best days I am limited to short bursts of activities and on my worst days even simple tasks like watching a film or listening to the radio are beyond my capabilities.
As a university graduate who now struggles with simple cognitive activities it can feel as though my intellect has been destroyed by my illness. Clinical studies however, reveal that IQ itself is unaffected by ME but its effects on processing speed and working memory can be extremely debilitating. Without working memory we cannot choose from a simple list of options or remember the logical order of actions needed to complete a task.
While people with ME can generally access knowledge that they learned before falling ill, they lose the ability to retain new information easily. This has certainly been my experience of living with the illness.
Encouraged to take up knitting for physiotherapy, I had no difficulty remembering the single basic stitch I’d been taught as a child but attempting to learn a new stitch proved an unexpectedly monumental task. Numerous times over several years, my mum patiently demonstrated the same simple action. I would seem to have mastered it every time, until I paused to sip my drink however, or attempted to alternate rows of different stitches, at which point the stitch would be wiped from my working memory and my long-suffering mother would have to show me all over again.
A few years ago, being too ill to work, I decided to attempt some distance learning to build up my CV in the hope of future employment. The logical step would have been to build on my undergraduate qualifications with a master’s degree or PhD but my cognitive issues made such high level studies unrealistic.
The first course I attempted was pitched at the academic standards of a typical fourteen year old. Despite its short-answer questions and low literacy requirements it took four times as long to complete as the recommended timescale for a healthy adult fitting part-time studies around full time employment. What others could do in an hour took me weeks to accomplish and if I studied for more than ten or fifteen minutes in a day, post-exertional malaise would render me too ill to study again for days after.
The best way to explain what it’s like to study with ME is the analogy of a resistance harness a professional athlete might use during training. In order to build muscle and stamina a training partner uses their bodyweight to pull back on the handles and impede the runner’s progress. This forces the runner to expend far more effort for only a fraction of the output while less accomplished athletes running unencumbered might easily outrun them.
This doesn’t mean of course the harnessed athlete is incapable of crossing the finish line; it’s simply going to take them much longer to do so. Usain Bolt doesn’t cease to be a world class athlete the moment he’s strapped into a harness, but he will (temporarily at least) lose the ability to put his full potential into action. It may be far more exhausting and take longer to recover from but with patience and perseverance he is sure to cross the finish line in the end.
The fact my IQ remains untouched means in theory I am still capable of the same mental feats that once came so easily but it takes far greater effort for a fraction of the productivity. The time-consuming nature of studying with cognitive dysfunction has forced me to go from being the student who went the extra mile to the student who cuts every possible corner and does the barest minimum to get the job done.
Difficult as it’s been, a handful of certificates of increasing difficulty testify to the fact that I still have some academic potential, even if I struggle to put it into practice. Any amount of studying, however small, still beats twiddling my thumbs or watching Jeremy Kyle and perhaps some day that elusive Masters or PhD might prove to be possible after all. Watch this space.