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
hop1510j@sol1.uel.ac.uk
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