Lloyd Hopkins

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An Education in Itself:
The experiences of an ME sufferer within the British Education System and the lessons learnt

Educational accolades are still held in high regard in Britain. For most, a good education is the pathway through which people hope to achieve their social and economic aspirations. Although it is clear that in many circumstances relevant experience can prove just as valuable, for the young this is not a consideration.

To be denied an education is surely one of most unfair and unjust experiences one could encounter. To be denied an education due to the onset of illness is perhaps even more cruel. This is the situation in which many young sufferers of ME find themselves. No longer able to study due to cognitive problems and the all too familiar fatigue, many find the continued pursuit of their chosen course of education to be an impossible task. The strain, both mental and physical, can be detrimental to the student's health.

Those fortunate enough to be able to continue with their studies will almost certainly require some sort of assistance to enable them to continue. This can take the form of flexibility on the part of the educational establishment regarding submission dates for work set, understanding the frequent absences of the student and the allowance of regular breaks during periods of assessment such as formal examinations.

I feel it might be valuable to recount my own experiences as a student with ME, as they span School, College and University. I have seen the various provisions which can be made. I have also both benefitted from the understanding of the academic authorities and suffered the effects of their ignorance.

I first became ill around October/November 1988, when I was studying in the 6th Form at school. I had no idea I could possibly have ME, or any idea how long my medical problems might persist. I knew next to nothing about the subject anyway, my only knowledge of the condition being derived from media reports.

Thus began my first period of absence. I assumed I was just a little run-down and expected to return to school within a few days, perhaps a week at the most. However, it was not to be and days turned into weeks, which turned into months. During the period running up to Christmas, I visited my GP on a number of occasions and was prescribed what I later found out to be a form of tranquilliser.

As this initial period of absence increased the school began to become concerned. It is a very awkward situation not being able to name any particular reason for one's non-attendance. There was no real medical condition which had been pinpointed, leaving me only a description of my symptoms to offer the school. Fortunately they were extremely understanding. This, in hindsight, is remarkable as there was no sign of the dreaded, yet all too familiar educational red tape. The school merely took my word that I was in no fit state to study, never mind attend regularly.

I returned to school for the start of the spring term, not because I had improved, but rather that I now feared for my education. The 6th form environment was a relaxed one, but all the same it was essentially based around the normal school's activities. It was a 9am to 3:30pm job, and we were expected to remain on the premises at all times during these hours, whether we had a lesson or not. It was fairly easy to take the opportunity to rest during these "free" periods, and I certainly did so. Nevertheless, the mere act of having to complete what was, in my condition, a long day, was arduous in itself.

The summer of 1989 brought the first set of examinations that I had to face since the onset of my illness. Surprisingly, these exams went well, which caused me to change course somewhat. I had expected myself to be leaving the educational system, but in the light of these results, I decided to continue my studies at a local college.

I was still without any positive diagnosis, or even a vague indication of what might be wrong. By this time though, I had begun to seek answers to the situation myself, desperate for an explanation. During this period, I encountered ME. At a visit to a local support group I found myself in conversation with a number of people whose experiences and symptoms were uncannily similar to my own. I mentioned this to the neurologist I was seeing. The reaction I got from him was the same one I was to hear time and time again over the next few years. Basically, I was told that ME didn't exist. One doctor went so far as to suggest, explicitly so, that ME sufferers were somehow mentally ill, and were in fact to be avoided. This suggestion might shock some, but I expect those who have been in a position of seeking a diagnosis have heard such a comment before.

September saw the commencement of my new course of study. Predictably the increase in academic commitment hit me hard, a sharp contrast to the rather laid back environment I had encountered at school. I decided to approach the college authorities to tell them of my problems and seek some form of assistance. I found to my dismay a rather less understanding reception than I had received at school. The chap I spoke to had an uninformed attitude towards ME, sadly all too typical. He decided to make a layman's spot diagnosis, declaring that if I had ME I would be virtually unable to stand.

In one swift action he dismissed my whole situation as being merely the result of my overreaction to everyday aches and pains. The contrast of this response to my previous experiences with educational authorities was so great that I was utterly taken aback. I left it, rather stupidly, at that. Thus began two years of heavy studying, without the much needed support.

The period of schooling which followed saw me struggling desperately against the effects of my illness. Fatigue, pain and cognitive problems were a constant problem, and the strain necessary to maintain my studies merely aggravated the problems. It was a vicious circle indeed. It should be said that I enjoyed my studies regardless. Perhaps that was why I didn't give them up. There were often times when I simply could not perform to a satisfactory standard. This brought the predictable disapproval of my lecturers. I was often desperate to tell them individually of my problems, but somehow never managed to do so.

This difficult period was concluded by the exams for which I had been studying. I had applied for a place at a local university for a degree course, but in all honesty I didn't expect to get the necessary grades. However, I passed with grades which were just sufficient to get in. It was a real scrape - skin of the teeth stuff.

Whilst obviously glad to have gained a place, I seriously questioned my ability to cope with a degree level course which, I had been warned, was no picnic. The idea of giving my education up had never crossed my mind at any point.

Soon after my studies at university began (October 1991), I found that those warnings were quite accurate. Compared to my previous experiences, the university was a positively hostile environment. Assignments had to be on the dot, or you failed that piece of the assessment. Still lacking a diagnosis for my condition, I didn't approach the university authorities for help, wary after my previous experiences.

By the end of the first year I was low, really low. This first, extremely challenging year had kicked the stuffing out of me completely. I passed my end of year exams but it later transpired that although academically fit to continue, I was medically incapable of doing so.

The second year saw my eventual submission to the illness. I was simply in no fit state to cope. A month into the first term, I got what I had waited for--a positive diagnosis of ME. Approaching Christmas, I was in a rather depressed state, unable to meet my academic commitments.

As the coursework piled up and the deadlines approached, I decided I had to talk to someone. So I found myself close to tears in a lecturer's office. She was indeed aware of ME and its effects, having a relative with the condition. Luckily, she was extremely kind and took it upon herself to help me sort myself out. She immediately relaxed my deadlines and contacted my course tutor as well. I certainly owe that particular lecturer a lot. Without her help at that stage, I cannot imagine what would have happened to me. Most universities (in the UK, at least) appoint a personal tutor to each student. The fact that I approached someone else about my problems is perhaps one of the most important points of this account.

My course tutor approached me and asked me for my medical evidence, which following the diagnosis I was now able to provide. The support I got from that point on was remarkable. All of my coursework deadlines were cancelled, and I was able to complete the coursework in my own time. Additionally, provisions were made for examinations, and I was allowed extra time and regular breaks during the exams.

In many ways it all seemed to have come too late. I was now so exhausted that from February up to the exam period I very rarely attended at all. This meant that I missed a great deal of study.

It was during the period just prior to the examinations I really found that I had some true friends. A number of them allowed me to revise with them, filling me in on those areas which they believed would be of most importance in the examinations. This help proved to be invaluable, enabling me to focus my limited energies on those areas of greatest importance.

The 1993 exam period consisted of three long weeks. I managed, to my amazement, to pass four out of five of the exams. This leaves me with one to resit in September and a few more assignments to hand in which I failed to submit during the year. The second year of my degree, which I had personally given up on at one stage, seems to have been saved by the kind actions of the college authorities (and that one particular lecturer) and a small circle of true friends. I still have to pass the resit and submit the work to pass the year, but I feel quite confident that I can now do so.

As I said in the opening to my essay, the purpose of describing my personal experiences was to allow me to assess the lessons to be learnt from them, which I feel will be of value to others in similar positions.

First, those who so far lack a positive diagnosis may well find that they have difficulty in obtaining any form of assistance from the educational authorities. For these people, they will sadly have to rely on the good nature of the institution in question. Given the difficulties often faced in obtaining this diagnosis, this situation is incredibly unfortunate.

Secondly, the student must be prepared to communicate with the authorities properly. Remember, no one else is going to do it for you. If you need help you simply must seek it. If you have no luck the first time, see somebody else within the institution but don't be deterred from an initial knock-back. This is of utmost importance! If you feel that you simply can't discuss your problems with the person whom you would normally be expected to, just find someone else. The same goes if you meet with indifference. Simply keep trying until someone listens to you.

Perhaps this sounds obvious but I know from my own experiences that other people have been deterred from seeking further help following an initial negative response. Such a response can be extremely off-putting and even upsetting, but one must not be put off. Unfortunately in the weakened state we often find ourselves in, it can be a daunting prospect to try again.

ME sufferers need to pace themselves, and the academic routine simply does not lend itself to such a personal regime. With the institution's help though, students will be better placed to be able to spread their time out, working when they are able and resting when needed. Remember, you need and deserve this help. Simply do not take no for an answer! It is your education after all.

There are a couple of other points of interest. My experiences relate solely to the UK educational system, and although I can't say for sure, it seems likely that such things are also available in other countries, in one form or the other.

Counselling services exist in most universities, and are often open to both students and staff. Sadly these services tend to have rather poor resources, and the services they offer are usually in great demand. It seems likely that one will encounter a waiting list when approaching the counselling service for an appointment.

There will usually be a coordinator for students with special needs and disabilities within the university. From my own experience, I can say that they are an extremely valuable source of help. If necessary they will represent your needs to the academic staff, and their word tends to carry more weight than that of a student. Students with ME would be well advised to make an appointment with this coordinator, if one if available at your institution.

Ultimately there is only so much assistance a student can get. Unfortunately it may be the case that the student is unable to continue and must either suspend or cancel his or her studies. This is a truly tragic situation. It can only be hoped that the student will be able to complete his or her studies in the future, in times of better health.

As my story shows, by obtaining help one may be able to continue, whereas without such assistance one might otherwise simply reach a situation where the continuation of education is impossible. I was lucky, I got help just in the nick of time. I honestly believe that another month would have seen me out of education.

I sincerely hope that this essay will provide the information and encouragement students need when seeking the support they require. I wish you all the luck in the world with this.

Reproduced with permission from CATHARSIS, volume 4, September 1993.

© Lloyd Hopkins, 1996

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