Tuesday May 6,
2008
The Guardian
What it really means to be healthy
~~~~~~~~~~~~~~~~~~~~~~
After a bout of glandular fever at university, Keith
Kahn-Harris developed chronic fatigue syndrome,
from which he still suffers. He explains how this
debilitating and misunderstood illness has changed
his life for ever
For the past 15 years, I have suffered from myalgic
encephalomyelitis, also known as ME or chronic
fatigue syndrome (CFS). I contracted ME following a
bout of glandular fever at university and have never
fully recovered.
While I am "lucky" enough to have relatively mild ME
- I work part-time in the sociology department of
Goldsmiths, University of London, I have a wife and
two children, I have travelled and experienced many
of the things that people of my age have - I always
have to be careful not to over-exert myself, to
balance my need for exercise and stimulation with
my need never to exceed my boundaries. As these
boundaries are always shifting - what I can manage
one day, I may not be able to manage the next -
determining my limits is excruciatingly difficult. At a
minimum, I must sleep late most mornings and nap
every afternoon.
Despite keeping a tight control on my physical
limitations, I am periodically struck down and have
to retreat to bed for days at a time. I have tried
various treatments, but only traditional Chinese
medicine and sleep medication have really helped.
Barring a miracle, I do not expect a full recovery and
I class myself as having an invisible disability.
I have had ample time to reflect, over the past 15
years, on what it means to be well. In the early
years I was desperate to return to my truncated
early 20s life, to be out all hours, to throw myself
into work, play and relationships. I often pushed
myself beyond what I could cope with, leading to
relapses.
With my failed attempts to live a normal life, I was
in many ways fulfilling social expectations of what it
means to be a good patient. Think of Jane
Tomlinson, who, despite terminal cancer, spent the
years before her death last year engaged in heroic
athletic challenges. Tomlinson was and is widely
admired for never giving in and for pushing herself,
and in 2007 she received a CBE for her efforts. She is
an example of what our society expects: that illness
should be fought. Yet while this model is appropriate
for some people, it cannot work for everyone or for
every type of illness. With ME you cannot run a
marathon.
But many people assume ME is an illness to be
combated like any other. Long tagged with the
disparaging "yuppie flu" label, there is enormous
ignorance of what it is and what patients go through.
Although an estimated 240,000 people in the UK
suffer from ME, its effects are chronic and invisible.
Symptoms include extreme fatigue, muscle pain,
sleep difficulties and memory problems. About 25%
of sufferers are housebound or bed-bound. ME is
often accompanied by isolation and prejudice. The
prognosis for ME sufferers is varied; some recover
fully, but many do not. Even in its milder forms, ME
can devastate lives and destroy careers.
For many years, psychiatrists dominated the research
and treatment of ME. The treatment of first choice
remains various forms of cognitive behavioural
therapy (CBT) which, applied crudely, can end up
suggesting to patients that their illness is "all in the
mind".
The ME community is full of stories of patients being
forced into exercise programmes that make their
health worse, of benefits and insurance claimants
accused of lying, of parents of children with ME
accused of Munchausen Syndrome by Proxy. Sophie
Mirza, who became the first person to be classified
as having died of ME in the UK in 2005, was even
forcibly sectioned.
Thanks to years of campaigning by ME patient groups
and charities, the situation is improving - very
slowly. Psychiatric explanations of ME are
increasingly disputed and ME is now listed by the
World Health Organization as a neurological
condition. No one is certain what causes ME or how it
should be treated. A mark of the long way that ME
studies have to go can be seen in the work of the
National ME Observatory, a lottery-funded project of
which I am on the steering committee, which has to
conduct the kinds of basic social research, such as
piloting an ME disease register, that researchers on
other illnesses take for granted.
Crude applications of the psychiatric model of ME
may have caused a lot of damage, but they are in
line with common perceptions of ill-health. ME is still
often treated as a battle to be won. To be cautious,
to listen to the needs of one's own body, is to "give
in".
Increasingly, I've been thinking: what would it be
like if I recovered tomorrow? Having faced years of
teasing (some good-natured, some less so) for my
supposed laziness, I would doubtlessly seize the
opportunity to dive into a full-time job. With it would
come status, security and a better salary, but also
long hours, long commutes and pressure. Today I can
work on my own terms, at my own pace, and I can be
home when my son returns from school. Don't
misunderstand me. Although I have a far better life -
thanks to a supportive family - than many people
with ME, I do want to get better. The problem is that
the society that "healthy" people live in is just not
that healthy. I am caught between the desire to be a
"normal" member of society and a recognition that
normality has its downsides.
ME challenges our ideas about how to be a healthy
person. The message I get from the media, friends
and colleagues is that one should treat illness as
alien, as an invader to be evicted as soon as
possible. But to have any kind of quality of life with
ME, you have to accept the unwell part of yourself.
This consideration of one's own needs might seem
like selfishness, but in reality it is necessary to
develop a proper balance between self and other and
to prioritise what is really important in life. Like
everyone else I know who has ME, I am prepared to
push myself when family demands it; I have taken
my kids to A&E in the middle of the night as many
other fathers have. And although I yearn to work
harder, I know that career is not as important as
family.
ME has forced me to embrace a healthy lifestyle: yet
this should be possible for everyone, not just those
with a chronic illness. But how many "healthy"
people feel obliged to come into work when sick?
How many "productive" people feel exhausted much
of the time and are dissatisfied with the maelstrom
of modern life? Is "pushing yourself" whether you are
sick or well always laudable? It is unsurprising that
there is disenchantment among many well people at
the pressures of daily life.
Next week it is ME Awareness Week, during which
charities will appeal for more public understanding of
the condition and more support for its patients. My
hope is that an increase in public awareness of ME
will not simply lead to more and better treatment of
the condition - although that is clearly crucial - but
to a wider appreciation of the lessons it offers to
everyone.