Show 5 looked at pain, in the company of Elaine Axten and Sarah Wylder Deshpande

. Details of the work

done by the Mental Health Foundation into pain at Be Mindful.
Music: Don’t Cry - Deerhunter
This is Technical Difficulties, Resonance 104.4fm. On this week’s show we are look
ing at chronic pain. Is it invisible to the disabling society here in the UK and
is the
situation any different in the US. On the line with me is Elaine Axten.
Elaine is in the self-same city as us here at Resonance FM but due to the techni
cal difficulties of dealing with pain in life, couldn’t make it into the studio.
EA: No, I don’t really make it many places. I often think about moving out of Lond
on simply because I don’t use it. It’s good for people who work and have a social li
fe
and I don’t have either of those things. So, I’m kind of hiding, hiding in the city.
TA: So, what causes your pain?
EA: I have had a variety of different diagnoses, probably the most useful one wa
s fybromyalgia. I had been getting lots of little things wrong with me, but not
seeing
them as being connected. So, I would have some cystitis, I’d have some migranes, I’v
e had some insomnia. I was just seeing these things as separate things. And
then they all came together in a grand orchestra.
What really put me on my back was back pain but my first diagnosis was a psych d
iagnosis. I think it’s not that uncommon for women to be seen as malingering
ladies who moan. That’s what took me out of the workplace.
T: They assumed that because something was wrong and they couldn’t identify it, th
at it must be psychological.
E: Yeah. Really they didn’t make any kind of effort to identify it. It took years
for me to get a diagnosis and it was really from pushing - me and someone on my
behalf
- that I got to see a specialist. You have to see a rheumatologist for fybriomya
lgia - it used to be called muscular arthritis - but they don’t own it. So they gu
y kind of
prodded me about a bit and said “Of course you have fybromyalgia” but of course they’r
e much more interested in what kind of state your spine is in so they sent me
off for an x-ray. It was a kind of diagnosis on the way to him finding out what
he wanted to know. Recently, I had another diagnosis which makes a lot of sense
given
what I’ve been through - which is endometriosis. And again, I’ve probably had it for
years.
It would have been better to have these diagnoses first, instead of being told I
was mental. and being put on drugs which actually made me mental. Which wasn’t
actually fun.
T: No, I can imagine not. So... given all that... Do you cope? If you do, how do
you cope, how well do you cope?
E: I was a teacher and I thought, I’ll give that up and do a PhD and rejoin teachi
ng at the point I would have been if I’d carried on teaching. So I signed up for a
PhD
and I was absolutely driven into the ground within a few weeks. I became very il
l. I was already ill and I got worse.
So I thought, let me go back to my basic training - which is fine arts - I’ll have
an exhibition. And at the time I was on drugs which made me even more fatigued
that I
was normally. I found it horrible, I actually disliked having my exhibition to t
he point where I took an overdose of the drug which was making me even more tire
d than
usual.
I didn’t die - which you have no doubt realised since I’m not talking to you from be
yond the grave. What happened was I thought “Now, I really will take myself on.”
and I joined a course which I paid for (which was quite frightening because it w
as expensive for me on benefits) called Breathworks - it’s mindfulness based for
coping with pain and illness - and I’ve actually ended up volunteering for that co
urse, I’ve done it 10 times and I’ve done the training to be a teacher even though I’l
l
probably never run a course myself but it really helps.
Even though I’ve been through the course 10 times I’m still learning because every d
ay you’re peeling back another bit of the denial you’re in, having to deal with new
stuff that arises - losing your career, not being able to have a relationship. Y
ou name it, there’s lots of aspects of life that you continue to have to deal with
as life goes
on.
TA: Disabilities can be visible to a varying degree. How visible is your pain? H
ow is that visibility or lack thereof affect how people react to you?
EA: Well, the people I’ve stayed friends with are the ones who actually say (laugh
) “You look awful” because they actually check to see how I am. Whereas because
I’m clearly able bodied and have the build of a Viking (I look quite hearty) and I
rally in company so I seem well... and what happens is after a couple of hours
of
having a visitor I need to lie down for two days. But they don’t see that - only p
eople who see me on an ongoing basis, eventually, do realise.
It’s not visible. I’ve often wished I have stigmata because I like the idea of havin
g some kind of symbolic bleeding but even something visible would be nice, just
as a
sign because actually I used to get nosebleeds as a kid and I used to get so muc
h sympathy and they don’t hurt. Whereas now it hurts and I get no sympathy
whatsoever.
TA: I can relate to that. As I child I used to fall over a lot but it wouldn’t hur
t me. but the reaction would be sympathy at least - somewhere down the road towa
rds
empathy but I wonder if we need a society that can actually react to people when
they’re struggling rather than waiting for some big neon sign above their head th
at
tells everyone they’re a cripple....
EA: I think we are in a bad society for that to happen, in an industrialised, se
gmented society where people are isolated. Everything is hidden, so many taboos.
Take
death for example. Lots of suffering is very hidden. In another society you may
be dead. Or you may be working to your abilities within your family group. If yo
u
couldn’t manage anything you’d be lying down and people would take care of you, witn
ess you. Like many people in a large city I live alone and you go ignored
because there’s no reason for people to notice you. You’re not a particular drain on
resources despite what the government would have you believe, and you’re not
getting in anyone’s way. You’re literally invisible unless you make a song a dance a
bout it. But if you’re not well, you’re not in a great position to make a song a dan
ce
about things.
TA: I can absolutely understand that. In fact, we were discussing before the dis
abling nature of filling out the paperwork for disability benefit.
EA: I’ve stopped trying. People tell me about things which could alleviate some of
my financial strain and I’d actually rather go without because you talk yourself
into
being even iller and then you are left to handle it alone. You make yourself mor
e ill by trying to imagine your worse case scenario in every aspect - and it’s a v
ery
detailed form. It’s even more worrying for people who suffer with anxiety and depr
ession. But it’s not just this government. A couple of years ago there was an
announcement that Incapacity Benefit was gonna be rebranded and we were all goin
g to be packed off to work in jam factories. I was absolutely terrified.
TA: Yeah, they’ve actually followed through on that. It’s the Employment and Support
Allowance. They’ve moved it from the ballpark of ‘how can we care?’ to ‘How
many people can we activate as drones in the economy?’.
EA: Well, at that point it becomes an argument of statistics. I believe that the
reason so many people were on IB originally was because during the Thatcher
government they didn’t want so many people on the dole so when they closed the pit
s and stuff they put a lot of people on Incapacity who perhaps shouldn’t have
been on. That was a good way of hiding people. Now Incapacity is the target beca
use we don’t have so much of a big employment problem - although it looks like
we’re about to have. It’s swings and roundabouts. What category are we going to fit
in now. I mean after spending all Christmas listening to Radio 4, the same news
every hour, I was having a real problem with anxiety. By the end of Christmas I
was convinced I was going to a labour camp, pretty much. I was only really lucky
thatI was onbe of the first people being interviewed and the woman was shocked t
hat I wasn’t getting more benefit. And I said “You’ll be surprised, I won’t be the only
one.”
TA: Yeah, absolutely. Elaine, I have to leave you there.
EA: Lovely to talk to you.
TA: Take care of yourself.
EA: And you.
TA: This is Resonance one-oh-four point four f-m. The open airwaves. Technical D
ifficulties with Tim Abbott. A short break for Daddy Antogna while I grab my nex
t
guest from the United States of America. This is Resonance one-oh-four point fou
r f-m.
Music: Daddy Antogna
TA: This is Resonance. one-oh-four point four f-m in Central London and around t
he world at resonance f m dot com. Technical Difficulties with me, Tim Abbott. A
nd
now, live and direct from the state of Virginia in the USA - I have Sarah Wylder
Deshpande.
Unfortunately, you’re joining us today because you have recent experience of a qui
te dramatic decline into pain.
SWD: Yes, about 10 and a half months ago, I ruptured a disc in my lumbar spine.
And since then, I’ve been dealing with chronic pain from that.
TA: So, how do you cope with it? Do you cope with it? My last guest was saying i
n most circumstances she doesn’t.
SWD: It really depends on the day and how severe the pain. I have a series of ph
ysiotherapy exercises I do when the pain is mild or moderate and that often help
s. I
also have pain medication. Strangely enough one of the things that helps the mos
t is the dog I got recently. He will lay around with me when I can’t do anything a
nd
sometimes he helps me get outside when otherwise I wouldn’t be able to move.
TA: I think relying on animals is a fairly common coping device. I wonder if tha
t is a depressing reflection on society that we have to. It doesn’t seem uncommon
for
disabled people to be relying on their pets for emotional support.
SWD: Well, I think it is very stressful on family and friends to be around someo
ne with chronic pain because first of all you might not notice the extreme chang
e in
your mood when all you can think about is how much pain you’re in and how you can
get that pain to stop. You might not realise how cranky you are. That can really
take a toll on your relationships. But the dog doesn’t care (laugh).
TA: Let’s look at broader society there in Virginia. Are you aware of people being
alert to the amount of pain you’re in and the suffering it’s causing you?
SWD: Sometimes. It kind of depends on how vocal I’m willing to be about it. I mean
, I could be at a party and I’ll have to say “I have to go into the other room and l
ie
down. There’s nothing else I can do. I have to go into the other room and lie down
and take Vicodin. That’s all I can do.”
But often people are quite dismissive of it. Like “Oh, a lot of people have back p
ain. It’s no big deal.” and if they haven’t experienced themselves they don’t quite know
how severe it is. So... people can be dismissive of it and it can be a little fr
ustrating definitely.
TA: You were telling me about a particular experience of public transport.
SWD: Yes. Because I don’t have anything like a cane or a back brace (I can use tha
t for my condition), there’s nothing external that shows I’m in pain apart from
maybe my posture or the look on my face. One day I was on the DC Metro here and
when I sat down I was in such severe pain that every bump was getting to me,
every time the train jolted. I realised I was crying. Right there in public. I w
as so embarrassed.
TA: Yep. Been there as well.
SWD: You’ve been there? <breath> It’s just the most embarrassing thing. People look
at you: Are you crazy. Should I move away from you. What’s going on?
You feel like people are staring at you and you’re just angry. First of all frustr
ated that you’re in so much pain and second of all that you’re being stared at, defi
nitely.
TA: So I wonder Sarah, are that point are you angry at the people who are starin
g? Are you angry that society is in a state where people would stare at you or a
re
you angry at yourself because you’re the person creating that situation by being o
n the Metro.
SWD: It’s a bit of both. It’s a bit of “OK, I need to get hold of myself. I need to be
able to put up that front of being tough and in control of myself and able to b
e stronger
than pain” which is definitely something in the US. You want to be tough, you want
to be strong and you feel ashamed of yourself that you are letting it get to yo
u that
much. But you’re also angry that people are rude enough to stare and worried what
they might be thinking about you.
TA: The UK system is state driven, what did you do?
SWD: I’m very lucky that I’m covered by my husband’s health insurance plan right now s
o what I had to do was go and see a GP and then be referred to a specialist
that my health insurance covered but unfortunately that specialist’s first suggest
ion was to do surgery. We chose to get a second opinion. But unfortunately, the
second guy who takes a more conservative approach and has not recommended surger
y is not covered by health insurance. So that’s been several thousand
dollars.
TA: Ouch. Sorry to hear that. Thanks for joining me Sarah. It’s been a while. I th
ink you could move fairy freely last time we met up, that’s the biggest irony of t
he
whole deal. Good luck on the recovery. You have a good day.
This is Resonance 104.4fm. Technical Difficulties. Further details, transcripts
and a chance to listen again at light chronicles dot info. For the Technical Dif
ficulties
crew, I’m Tim Abbott. Wear your scars with pride and remember, we all have technic
al difficulties. Goodbye.
Music: Sir Duke - Stevie Wonder