Good afternoon. This is Technical Difficulties on Resonance 104.

4fm
I am Tim Abbott and I have with me the Spoon Lady, Christine Miserandino from Ne
w York
C: Tim, how ya doin?
T: Yeah, not too bad. How are you?
C: I'm good. I'm just really excited to talk with you and your listeners.
T: So, what's your nickname about?
C: Well, I wrote an essay called The Spoon Theory, way back when I was in colleg
e, and it was just an essay...just a simple little essay. Little did I know, yea
rs later what it would turn into.
I wrote this essay as a way of explaining to my friends what it was like to have
a chronic illness. In my case it's lupus but really, it can purtain to any chro
nic illness. It's just really talking about how you have to make decisions every
day that healthy people really don't think about. Even simple things like eatin
g at certain times of day so that you can take medication.
Or planning your day to use the most energy for the most important things and ma
ybe missing out on others. It's really just about making choices. I think health
y people have the luxury of a life without thought. They don't have to think and
make choices like we with a chronic illness have to.
So in this case, I used a bouquet filled with spoons and I made her use a spoon
each time she did something that required either a lot of energy or a lot of tho
ught. It was my way of showing her that throughout the day, certain things cost
her a certain amount of spoons. That was called The Spoon Theory
T:It branched out into people, including myself, describing themselves as #spoon
ies
C: Yeah, who would have known that almost 7 years later that it really grew. I s
tarted a little website called BYDLS and I thought only my family was reading it
. I thought maybe 10-15 people were reading it. And I actually was going to use
it to post essays like The Spoon Theory but also to give updates on hospital vis
its or just updates on how I was doing, since we all know how annoying it can be
to repeat yourself 15 times over the phone.
What happened was, it really started to grow as people linked to the Spoon Theor
y and really identify with it as this awareness tool. As I said, not just with L
upus but with many chronic illnesses. Someone included the link in a magazine an
d before I know it, today it's really worldwide and the Spoon Theory has been tr
anslated into six different languages.
Now on Twitter, there's even a hashtag #spoonie, where this community has come t
ogether to talk and network and be supportive of each other. And like you said,
people identify themselves as spoonies.
It is almost now this inside joke. Amongst us. Amongst the people that understan
d.
T: Yeah
C: I always say "We are our best supporters" because it's something that others
might not ever be able to understand. We do.
The minute you say to someone "Oh, you're a spoonie? How's your day?"
"Oh, I lost all my spoons because I took my daughter to the park"
You know, and it's this immediate understanding. I said jokingly the other day t
hat Spoonies are the Secret society of the sick.
T:Yeah, the hashtag is a really interesting thing because an emotionally distres
sing tweet might be tagged because the other spoonies will relate to it and shar
e their pain. Or share the ridiculousness of the situation if we're talking some
of the scenarios in this country at the moment.
C: But not just with support, I noticed people helping each other - saying "This
doctor I went to was great" or "This helps with nausea", "I tried these ginger
cookies and that helped". All of a sudden these little tips and tricks. I said "
Wow. We are our best resource."
We just never had a way to connect before. Now, with this spoonie community that
's been built, now we're connecting. It's amazing that's it not just support or
with humour but also with help. It's great.
T:I spoke on this show to Kaliya Franklin of the Broken of Britain about how the
y, us and yourselves at BYDLS are fellow travellers in the way that we process t
hings.
I've lost track of how many times I've said this: The importance of sharing usef
ul information.
C: Yes
T: Especially because whilst all disabled people are very good at improvising, t
hey might not realise that that little thing they've just done might be useful f
or other people as well.
C: I think, we do what we have to do and we're not even thinking about it, becau
se you have no choice. I have to get up these stairs whether I like it or not. S
o I'm gonna figure out a way. I didn't realise that my little trick has become s
omething that someone else can use.
I always say "Let my mistakes, the times that I have fallen help someone else. B
ecause why should they fall too?
In the States, dealing with all the healthcare issues that are going on at least
here, as well, why should someone else make the same mistake I did? If I all of
a sudden was put on a 3 month waiting list because I did something wrong, well
I don't want that to happen to someone else. Let my mistake help you.
T: So, how does rationing - saving your spoons - come into that?
C: Well, today is a perfect example. This is what you get with live radio! My da
ughter happens to have an ear infection, and last night I was so exhausted that
I was falling asleep in the chair. My Mom - without even thinking about it any m
ore because spoons has become a language upon itself - said "Save your spoons.Go
to bed early. I'll give her a bath." Because she knew that I would have to be w
ith my daughter all day as she missed school, so if I went to bed early last nig
ht, I possible would have more energy today. To deal with my wonderful, loving 3
year old.
T: Hahaha.
C: And three year olds take a lot of spoons! If I went to bed early last night,
and maybe got a good nights rest then that would be helping me - possibly - toda
y.
It's no guarantee, you ration with hopes it will help. It's no guarantee, I coul
d have woken up today and not felt well, but odds are we learn our own bodies an
d we know if we went to be early one day we'd have more energy the next.
We know at Christmas that we'll use all our spoons to put the Tree up when we kn
ow in our head that that next day needs to be a down day.
I travel a lot for my work, doing speaking engagements. I always say it's not th
e speaking engagement, it's the day after. That's what gets me.
It's a matter of rationing your highs and your lows. Not just your physical ener
gy but your mental energy too. Sometimes, manoevreing through life with a limite
d amount of spoons takes a lot of mental energy as well - juggling everything su
ch as medication times, doctors appointments and just life in general.
T: For me, everything I do with my left hand takes a spoon. I have to consciousl
y think "Right, I have to pick that up.". No-one else has to think about that, i
t just happens. The nerve message is sent and the arm does it.
C: What amazes me is that it started with Lupus and invisible diseases and now a
n amazing variety of communities have grabbed on to the Spoon Theory and the who
le BYDLS living life to the full mentality. Because, I hear from people with can
cer, diabetes, cerebral palsy, MS, even some people with psychological disorders
.
What's so great about it is we all have different physical manifestations but th
e fact is, your soul and heart and the emotions behind it are the same
Me feeling left out because I'm too tired to go and have a drink with my friends
is going to be the same emotion as someone else not being able to participate i
n something.
It's not the event: it doesn't matter if its a birthday party or a lunch or a wo
rk day. It's feeling left out, or feeling like you can't do something you want t
o do. Sometimes the actual diagnosis doesn't matter. To me, it's building this c
ommunity that have felt the same way. It's about the feelings.
T: An acquintance on Twitter commented that diagnosis was good because at least
he knew what it was.
C: Sometimes, when you have a diagnosis, now you know what you're fighting. Now
you know who you're in the ring with. (laugh)
T: (laugh)
C:It has been amazing how many different groups meet up on Twitter and Facebook.
For instance, when I was on chemo from my lupus, someone who gave me advice on
tackling nausea was on chemo for cancer - and someone else who was just pregnant
!
But sometimes the tips can work across the board. Some of the articles I write,
the tips that we share, it's so beautiful because it really doesn't matter - If
we can help each other then we shouldn't let the labels of our illness stop us f
rom doing that. The situations can be the same, the medicine side effects can be
the same.
T: It doesn't matter what the cause is if the effect is the same.
C: Exactly, exactly
This is Technical Difficulties, Resonance 104.4fm - Tim Abbott and Christine Mis
erandino, discussing the nature of linking up and sharing information but also d
iscussing lupus.
After a long break, a new drug treatment in the USA has been cleared recently.
C:Yes, this was so exciting, recently after 52 years of no medication specifical
ly for lupus patients, a drug called Benlysta was approved. The FDA approved it
after a long process. What was so great about it is, whilst it's not a cure or a
miracle - it's going to be another choice. The most beautiful thing about it is
that now the government actually approved something for lupus. Someone broke th
rough. Uncharted territory! Now, I feel like other researchers and other compani
es, other scientists, who knows maybe kids in medical school now... before they
might have said to themselves, why bother doing lupus research, it never gets ap
proved! But now, that has changed. Now something did get approved. I feel like t
he path has been set.
It was such a huge breakthrough because now this means there will be more resear
ch. There will be other drugs down the pike. Now a lupus patient has options. Be
fore, there was a set of medications and you kind of had no choice.
The other thing about it that's so great is for me personally it really felt lik
e it validated the disease here in the US. Because before that, if your doctor r
eally didn't have a specific medicine, and the government really didn't approve
anything, you didn't feel as validated. But with the FDA approving Benlysta, it
felt like the word lupus was in the news!
You know, (laughs) people were talking about lupus. Now, there's adverts on TV a
nd online and it just felt so great.
In fact, at one point. I looked up and said "(gasp) There's lupus on a billboard
?!".
T: (laughs)
C: Instead of being the unheard and the unrecognised, now there's this new medic
ine and I really felt like it validated a very unheard disease, you know.
T: So, let's cast some light into those partucular shadows. Can you explain what
lupus is?
C: The way I describe it to my friends as a non-medic is that lupus is a disease
in which the body attacks itself. It's almost as if you are allegic to yourself
. Normally when your body has the flu, your body would attack the flu. But in lu
pus's case, it can attack any organ in your body: skin, bones, muscle, any organ
, heart, kidneys, lungs, even your central nervous system - your brain. So, at a
nhy point in time your body can go into a flare and begin to attack itself.
There are people who live with Lupus with very mild, mostly joint, aches, fatigu
e, things like that.
But there are people who live with lupus who have much more severe disease that
could involve kidneys and heart and other organs.
A lot of people identify lupus because of a butterfly shaped rash that a lot of
us get across the bridge of our nose and cheeks sometimes when we are in the sun
. Not all lupus patients have that, but some of us do. That's why a lot of peopl
e in the lupus community identify with the butterfly.
T: My experience of lupus has come through the singer Seal, who has prominant fa
cial scarring from the condition. When people don't know what lupus is, they mis
-diagnose those scars.
C: Seal has a varient of lupus which is restricted to skin.
What is great about it, is when people don't know then they are curious. And the
n they ask. It really takes people, celebrities such as Seal but also people lik
e you and me to open our big mouths (laughs) and start talking.
Do you know how many people I meet when I'm doing speaking engagements across th
e country that say to me "Oh, I'm so glad I found your blog because I didn't kno
w anyone else who felt the way I did." or "I thought I was the only teenager at
that time living with lupus, and put on all that weight from steroids and was up
set about it, or lost their hair"
I feel like when we don't talk, we're not learning. We're not reaching out. It's
a disservice to all of us. It's so great that so many of us are talking because
I've heard all the time "I've heard the word lupus but I didn't know what it me
ant". So, by being open and talking about it, so many people have been educated
and learned more about it.
T: Because I am more able to communicate than many with CP, I try to speak for t
hose that can't.
It also always surprises me when people don't know anything about really quite c
ommon conditions.
C: Yes, I feel the same way. I'm always amazed. A big joke amongst some of the p
eople I used to work with was that a former colleague once said "Oh, lupus, you
still have that?" (laughs) And I just said "Oh no, it didn't go away yet." as if
I could just pop a vitamin and it would go away. She didn't mean anything by it
. She wasn't meaning to offend me. It's just again, when you don't know, you mak
e assumptions. She was assuming, that thing I was dealing with eventually went a
way.
With Lupus you can have flares and remissions and she just figured when I was in
a remission that it went away.
People make assumptions, or when they don't know they guess - not with any ill-i
ntent. I think that when they guess, they might guess wrong. And that's why ther
e's so much wrong information out there.
Like you talk for those that can't, I'm ok with talking. I'm ok with being out t
here. I'm one of the people who isn't shy. I'm one of the people who might not w
orry about their friends and family, I'm very lucky to be so supported. I can be
open, I can talk about it. So sometimes I feel like I'm talking for those who c
an't. Or, when I travel, I'm travelling for those who can't. Because there are p
eople who, because of their disease are stuck in the house, or they might not be
able to be open at work so they might have to keep it a secret.
There's so many reasons why people can't be advocates, so I feel like when you c
an be an advocate, you should.
Absolutely, as I was saying earlier. That is how we got here. This show, your we
bsite.... it was Ian Dury who said disability isn't about being brave, it's abou
t being organised.
It becomes necessity because as you said earlier, you have to do it so you learn
how.
C: If you're gonna get things done, you have to find a way.
The internet changed everything for a lot of us. 18 years ago when I was diagnos
ed, I felt like I was the only girl in Brooklyn, NY who had lupus. And not just
that. I probably felt like I was the only girl in the whole world.
I had to go to an actual library - remember those (laugh) - and get books and yo
u had to do research and it really was a tremendous chore to research your disea
se but also your medications and maybe your doctors.
And now, you're not the only one in the world, you and I find each other because
there are many times when I'm up late at night and can't sleep. (laughs)
T: Yeah, the relationship between insomnia and disability rights is quite strong
for one reason or another. (laughs) I'd love it not to be, but it is.
C: It makes me smile though. Instead of people feeling completely alone: any tim
e of day, they can go on the internet and maybe find someone else to at least ta
lk to. That is such a world of a difference than 18 years ago, when you might ha
ve been up at night but you really had no one to talk to about what was going on
. You might have had questions: Hey, am I the only person who gets muscle aches
when I'm on this medicine?
But now, you can kind of do a shout out. And ask around. And I just feel like it
is so much easier. To connect, to find support systems online, to find support
groups, message boards. There's just so much more out there. And so many more wa
ys for us to connect and to educate ourselves than there was years ago.
To me, the internet has brought about a feeling of independence among the disabl
ed community because now, we can learn about things ourselves. We can learn abou
t our own doctors and we don't have to rely on others as much.
I even laugh, take shopping from home. That seems such a silly task but because
years ago, that wasn't available, I had to rely on others to take me to the stor
e, or help me carry bags since my back was hurting and its hard for me to carry
grocery bags.
Now, if I'm able to go shopping on line, I can have my food delivered. Even thou
gh that may have nothing to do with the support and idea of spoons, it does have
to do with being independent. The internet changed how we empower ourselves.
T:I also think because people become disabled as they age, the process of empowe
rment is being helped by an aging population.
C: I'm just really proud that people don't have to live feeling alone any more.
That feeling of loneliness or dependency, whether it's within your own home or o
nline, I just remember that feeling of loneliness: of saying "Am I the only pers
on whose hands get really cold because of arthritis?"
I remember typing it online one time, and one of the people went "No! That happ
ens to me too!" Immediately I had this feeling of "Wow! I'm not the only one!" T
hen you can laugh about it. Then you can share tips. Because once it's out there
, it's out there. We can laugh, we can share tips, we can help each other.
But most importantly, no-one needs to feel alone any more. Everyone can be empow
ered. It's so much easier to reach out with the internet.
Now I have my good friend in London, my good friend Tim, that when I can't sleep
I can reach out to you. Or when I'm having a hard time.
I loved last week when I was having personal issues. As we all know, our persona
l issues affect our physical life, stress does that. What was so great about tha
t was that I said one time "Running low on spoons" and you wrote to me and said
"Thinking of you, sending some your way." and just that little act of support. N
o great ocean is keeping us apart (laughs).
T: Thank you very much, Christine Miserandino. Thank you once again for joining
us from New York.
C: Thank you for having me and thank you everybody for listening.
T: If you want to catch her website, it is BYDLS. We are online at www.lightchro
nicles.info
I'm Tim Abbott, for the Technical Difficulties crew. Wear your scars with pride.
And remember, we all have Technical Difficulties. Until next week, goodbye.