M.E is a loathsome, highly disabling disease. It is a poorly understood, often a long-term issue and it is extremely isolating, socially. The few interactions M.E patients have with family, friends or physicians take on huge importance and it is therefore particularly cruel that the disease also carries with it a terrible stigma.
The
symptoms of M.E mirror laziness. M.E patients are quite literally
work-shy for work represents energy output that brings on ever
increasing levels of illness and disability. M.E is a condition that
strips away a patient's ability to earn, to gain personal benefit from
personal effort.
As with many, many, M.E patients I had,
over decades, a great many bad experiences with health professionals
and, from the patient perspective, it is really, really, odd.
When I came off my skateboard I fractured at least one of my elbows. I was ready for a right telling-off in the emergency department. I am almost fifty. I am overweight and I am slowing up. What I am doing on a skateboard ramp? It's idiotic! But it wasn't like that. Everyone was really nice and when I told the staff about how I'd broken my arms most replied "Cool" and "Are you getting back out there?"
A friend wrote that she thought
it was because the doctors and nurses filed my accident under "exercise"
and therefore *a good thing*. I go slightly further and say that my
skateboarding injury represents someone who is alive, someone who is
trying, someone who needs a bit of help to get back out there.
Investment in such a person appears to be a good proposition. Investment
in an M.E patient all too often seems like pouring energy into a black
hole.
When my wife's car broke down on a junction the roadside
assist said, "You know what to do next time... Get out and try to push.
It doesn't matter that the car's too heavy and there's no-one to steer -
if you are seen to be trying ....people will come and help."
And
this is what makes M.E so cruel. M.E patients are in fact trying. They are
fighting to survive and to maintain function. They are coping and managing and
dealing with a devilish disease every minute of every day. But on the
outside, to others, it looks like they're not. It looks like
they've given up.
Perhaps the hospital staff were entirely right: skateboarding has dangers, like any sport, but the benefits of exercise and the harms of
inactivity far out-weigh the risks of an accident. But it is a strange thing. I
also received far more compassion, far more respect and far better medical care in
regard to the damage I did to myself by smoking. And this is harder to
understand, for while COPD limits my breathing and my capacity to exert
*long term* it is *nothing* compared to M.E.
M.E ate much of my
life. M.E ate my career in medicine. It consumed my relationships and my simple capacity to
live without pain. M.E was not my choice, it was not a calculated risk,
nor a foolhardy misadventure. It was not a stupid, repeated, decision to throw away
my own health like smoking. It was simply something awful that happened in my life.
Something that left me needing help and assistance.
But other
people find M.E hard to respond to. M.E is invisible to them. They can
see bumps and bruises, they can x-ray bones, but they cannot see the
devastating effect M.E is having on your life nor your courageous
efforts to keep going. And while education and awareness are useful, and while it is true that healthcare professionals have a duty to study and to understand M.E, this text isn't really about what other people should do, it's about what M.E patients can do to help themselves.
There are some simple ways people with M.E (PWME) can give themselves the best chance to receive the
medical and social support that they truly deserve.
You have to show
how much you are trying. You have to ensure that everyone knows that you
see the benefit of exercise, that you want to work, that you want to
engage in sports and a full social life. You have to impress upon
everyone that there is something absolutely awful blocking you and that
you need help to address it, rather than help to address imaginary flaws in your
character. Explain how you have tried over and over and over
again and been knocked back every single time - *and that you are up for another go*.
You
have to record your activity levels across time. You have to show how
your disease has responded to your own efforts to change, to events and to interventions from
others.
Forget sheaves of printed-out websites and
trial-take-downs and instead provide hard data. If your doctor
recommends exercise increase show them what happened the last time you
tried it. Show them the risk, ask them what's changed, but above all
ensure that at all times you are working with them against the disease.
There is nothing quite as disheartening and dis-incentivising as being
opposed and attacked by people you are honestly trying to help.
The
social stigma that shrouds M.E patients, the idea that they are lazy is
as wicked as it is unjustified, however it is
understandable: The disease itself makes M.E patients look like they are
not trying and this is a real turn-off.
Show them how you fight M.E. Show them that you will never give up.
Show them how you try.
