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A little while ago I was looking around a website that sold cheaper e-books. A friend had given me this tip. The website is called smashwords and indeed it has lower priced and even free e-books in many categories and e-book formats. While I was filling in the keywords that interrest me, I came across the following book.
“Me and my pain – the challenges of living with chronic pain” by Abbey Strauss. As it was only 2$ and it seemed pretty interresting I decided to download it and give it a try.
I must say those were 2$ well spend. This book really focusses on one of the challenges of living with pain. And that is the challenge of making people [especially doctors] believe in our pain. With so many of us you don’t see on the outside that we are almost always in pain. And medical tests can’t find a reason for the pain. How often have you heard “Maybe it is more a mental problem”, seen in doctor’s eyes that they don’t really believe you. In this book is advocated for doctors and patients to be honest to each other and to believe in one another. Pain that is not understood and not acknowledged can drive people to suicide. Patients can feel they have tried anything and nobody understands what is going on.
The sections on addiction are really strong. A lot of pain patients are wronly labeled addicts because they take a lot of painkillers to get through the day. He explains very well that this is not the case. If the pain would go away so would the painkillers.
I found the following section of the book very striking.
Theseare the rules a patient must
follow:
Painpatients can’t have personality
disorders;if they do then the pain is not quite as real.
Painpatients can’t be depressed over their
stationsin life; if they weren’t as depressed, then the pain would
beless.
Painpatients can’t be angry at, or want
compensationfrom, those who wrongly injured them; if they do then
thepain is not as quite as real, or it is amplified just so they
canget a larger money settlement.
Painpatients can’t have insomnia; the reason
theycan’t sleep is because they have not learned enough
self-hypnosisor haven’t accepted their condition.
Painpatients can’t have anxiety or phobic
disordersrequiring certain medications; they aren’t allowed to
havemore than one curse in life needing treatment.
Painpatients can’t have different or
individualmedication tolerances; if they do not fit within the
normaldosing ranges, then they are addicts or placebo
responders.
Painpatients can’t have more pain than the
doctorallows; if they do then they are manipulative.
Painpatients can’t have good moods; they
haveto be miserable and complaining all the time.
Painpatients have to always be sick; they
can’thave good days and bad days.
Painpatients can’t have a good day without
everyonethinking the patient is finally learning to live with the
pain,or that the pain is at last vanishing forever.
Painpatients can’t disappoint people by
havinga bad day after a good day.
Painpatients can’t look good; if they look
good,then the pain can’t be so disabling or menacing.
Painpatients can’t respond to hope when they
getgood news; their demeanor cannot improve or change because to
doso lessens the believability of the pain’s intensity, constancy,
intolerance,and presence.
Painpatients can’t be skeptical; they aren’t
allowedto question new or proposed treatment decisions based on
theirreal prior experiences as pain patients.
Painpatient’s can’t have other people steal
theirmedications; being victimized, even one time, by a theft is
tooquickly considered as an indicator of the patient’s
irresponsibility,even for those who are generally very
responsiblepatients.
Painpatients have to be average; if they are
toosmart then they are too ‘pushy’.
Painpatients can’t be normal like the rest
ofus; why should they find it easier to deal with pain, or even
stopsmoking cigarettes, than anyone else?
Painpatients can’t believe in alternative
lifestyles; if they do then they cannot be as trusted, or they
mightbe considered as odd or eccentric. Such eclecticism can be
initiallyspooky and uncomfortable for many who treat these
patients.
Painpatients can’t be diagnostic oddities;
iftheir illness can’t be labeled, then it’s too quickly re-painted
aspsychosomatic.
Painpatients can’t be picky; they aren’t
allowedto want other than second string doctors.
Painpatients can’t take up too much of the
doctor’stime; if they do then they might become too erudite,
insistent,or burdensome, and this may frighten the doctor
away.
Painpatients can’t shop, cook and clean; if
theydo then they are not in that much pain—but, by the way, who
willdo these chores for them?
Painpatients have to like everyone the
insurancecompany sends to care for them; if they don’t like
everyone,then they are obviously non-cooperative and
thankless.
Painpatients have to be meek; if they
aren’t,then they don’t genuinely treasure all the good that others
aretrying to do for them.
Painpatients can’t know their history better
thantheir records; they aren’t supposed to be upset when wrong or
incompletedata and inaccurate conclusions are put into their
medicalrecords.
Painpatients can’t feel the double bind: “if
Itell him the other doctors were wrong then he’ll think I’m too
muchof a smart ass, but if I don’t tell him how the other doctors
werewrong, then we may start with the wrong clinical impression
ofme, which is why I am here in the first place, to have a doctor
getit right….”
Painpatients have to know magic; they are
expectedto take the cash won in a lawsuit, wrap it around the
painfulpart of their bodies, and make the pain go away. They are
theonly people for whom money can buy happiness or cure pain.
Painpatients have to get better; if they
don’t,then doctors may not continue to treat them for the parts of
theproblem that don’t get better.
Painpatients have to ‘learn to get used to
it’;this must be done with the same enthusiasm, gusto and
savoir-faireof someone getting used to being poor.
Painpatients can’t answer ‘how are you?’
with‘fine’; for to say ‘fine’ is thought to mean that they are
better.
Painpatients can’t choose to sacrifice; if
theyever do something one day because of the emotional joy of
doingit despite the pain penalty payable afterwards, then they
can’tobviously be in that much pain.
Painpatients have to perfect; I guess that
meansthey can’t be human.
I don’t think the situation here in Europe when it comes to getting the right medication is as bad as it is in the US. But still I found this very striking.
All in all I thought the book was a bit too long and there was a bit of repetition and the examples of people in trouble about getting the right medication went on and on. But in the end it was a very usefull book. It strongly advocates the rights of pain patients to be believed and to be helped! Every person has the right to the best life they can lead. For me that means pain patients have the right to medication they truly need and help from therapists to help them get the most out of life under difficult circumstances.
it’;this must be done with the same enthusiasm, gusto and