November 18, 2024 • 27 mins
I’m diving into the heart of why I started Getting Better Pod. After years of chronic pain, daily migraines, and feeling stuck in survival mode, I’ve learned a lot about coping and finding hope. In this episode, I’m sharing the Spoon Theory—a game-changer for explaining life with limited energy—and some advice for handling pain, strengthening relationships, and holding onto hope when it feels impossible.
Whether you’re living with chronic pain or illness, or supporting someone who is, this episode is for you.
Original Spoon Theory by Christine Miserandino
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
I'm Savannah Harding and this is Getting Better.
(00:10):
Hi, welcome back to Getting Better Pod, a place for health and healing.
It's been a while since I've released an episode, but I've been busy in a good way.
I'll get into it in another episode, but my eye has been doing so much better and I've
(00:32):
started a full-time job and life has been going well and it's been busy.
So I'm excited to be back here recording an episode.
In today's episode, should have been the first I released because it's at the core of the
why behind Getting Better.
The why is to help others who are going through hardship.
(00:54):
Today specifically health hardship because I myself have gone through health issues,
multiple surgeries, and today's focus, chronic pain and illness.
I haven't shared my full health history here, my eye history.
That's coming out a later time.
But what you need to know is that for the last four years, my right eye has been at its worst.
(01:16):
Currently, it is doing okay and like I said, we'll get into that later.
But for the past few years, I have struggled with daily migraines, migraines that don't
stop.
Waking up with pain, not being able to sleep because of pain, not being able to even cry
for years because it would cause me more pain.
And if you have questions about that, listen to episode number one about crying with confidence.
(01:41):
But I had to wear sunglasses all day at night and inside my own house.
I had to wear hats all the time to block the sun and I couldn't look at screens or work
at all for a time because my eyes were unable to focus and the pain was debilitating.
It was unbearable.
And this is just a slight summary of the last few years filled with pain and countless doctor's
(02:05):
appointments.
They use in nights alone questioning if life would ever go back to normal, quote, normal,
and if I would ever even get better.
And so was born the name of this podcast because once you begin a health journey, it's clear
that there is no final ultimate health destination.
(02:25):
We're always working towards a life of health.
We're constantly getting better.
And today, I want to introduce the spoon theory.
Like I said, I wanted this to be one of the first episodes because it really helped me
with my own understanding and just kind of narrative of my chronic pain.
(02:47):
With the spoon theory, I also want to give some advice from my own experience about dealing
with chronic pain because even though you might not be able to cure your chronic illness
or heal your disabilities, knowing how to lessen the pain and learn how to cope is a
win in my book.
And if you don't personally struggle with chronic pain or health issues, this episode
(03:08):
will still give you a greater insight into coping with hardship and will increase your
empathy and sympathy for those in your life who are forced to deal with health issues.
And I'm not saying this to put a curse on your life, but you will face health issues
and hardships in your life.
It's inevitable.
That's just the deal in life.
(03:29):
You get the gift of the good and the hardship of the bad.
But my hope for you is that you don't have to go through the physical pain and grief early
in life.
And though I am able to see the wisdom and silver lining through my own struggles, I
would trade it all in a heartbeat to get me more of time that I felt like I wasted in
(03:50):
this pain, to get more of time living instead of feeling like I'm barely surviving.
So whether or not you're going through or living with pain or illness, this episode
will shed some light on what it's like to live with chronic pain and some tips on how
to cope.
When I learned about the spoon theory, shout out to my awesome therapist for introducing
(04:14):
it to me.
My whole outlook on my situation changed.
I felt seen knowing others experienced this pain too.
And my relationships grew because I had this new tool to help explain what I was going
through and it allowed for a deeper understanding and empathy, which is so priceless when you're
(04:35):
fighting on your own.
And just to clarify for those of you who might not understand, I wasn't physically alone.
I had immense support, which I'm so grateful for.
But there is inherent loneliness in pain and suffering because you alone have to feel everything.
Put the effort in, seek help and personal understanding.
(04:57):
No one else can do it for you.
You have to face your own battles.
This is the kind of loneliness I'm referring to.
But back to the spoon theory.
The spoon theory was coined by Christine Miserandino, a woman with lupus, which is a chronic autoimmune
disease, one that makes your immune system attack your own healthy organs and tissues.
(05:20):
It's a very brutal disease.
And she, Christine, shared an article in 2003 about her spoon theory.
The spoon theory is a metaphor.
Spoons are your currency of energy for the day.
It's spoons because Christine was sitting at her kitchen table with her college roommate
at the time when she came up with this metaphor.
(05:41):
So a normal, quote, healthy person has unlimited spoons.
But people with chronic pain or illness wake up with a few spoons, let's say 10 to 15.
Some days you'll have more than others, but it takes one spoon to get dressed, two spoons
to wash your face and brush your teeth, three spoons to go to a doctor's appointment, etc.
(06:05):
We all have finite time to choose and prioritize our spoons to fit our needs and wants.
But spoonies, those who identify with chronic illness or pain, must dole out their spoons
wisely.
Spoons have to be saved for needs before wants.
Spoons don't roll over to the next day and your calculations can be off.
(06:27):
And what should have taken only two spoons might have needed four, or there could have
been an emergency and you needed 10.
And there have been days that I've woken up with 10, 20, 30 spoons.
Other days it's been three, two, and even one spoon.
You can't forge more spoons.
(06:48):
And sadly when you run out there can be horrible effects like a whole body flare up, panic
attack or limitations that then affect the next few days.
And Christine described to her roommate that the difference between being sick and being
healthy is having to consciously think about things when the rest of the world doesn't
(07:09):
have to.
And it sucks to have to say no to things, to have limitations and feel a lack of freedom.
But Christine also shared her wisdom that she sees this as a blessing because she's
been forced to think about everything she chooses to do.
You're not going to waste your spoons because that's not an option anymore.
(07:32):
The spoon theory helps relay your energy levels in a more tangible and I think less offensive
way.
You can say, I have enough spoons for coffee but not for dinner with you.
Or to yourself you can say, okay I'm not willing to spend my spoons on brunch with this like
pseudo friend but I would rather spend them on something that brings me more joy.
(07:58):
Spoonies don't have the freedom to choose how many spoons they get to spend or what to
spend them on.
And this helps in relationships so the person on the receiving end of those spoons can understand
that it's not that a spoonie doesn't want to spend time with them, it's just that they
don't have the energy or resources to.
(08:19):
It's nothing personal.
In fact, the spoonie is the one in pain and the spoon theory helps share that message
without feeling like one person is a victim in the situation.
Be grateful if you've never had to count your spoons and if you have some extra maybe try
to share your energy and spoons with someone who's running low.
(08:42):
And now some spoonies might disagree with me but I think it's totally okay for quote
normal average healthy able bodied people to use this metaphor in conversation too because
shared terminology or phrases help you stay on the same page in understanding and helps
you not drift into hurtful misunderstanding.
(09:05):
And misery loves company and after I heard about spoonies I felt like I was in a club
with people who understood what it was like to have little to give a lot to go through
and a heart to live a life of joy no matter what with no judgment and with all the empathy.
In fact, I met a spoonie on a plane before I heard someone call people with chronic pain
(09:29):
and illness spoonies and I ended up dropping her off at another spoonies house and she
told her friend look she's a spoonie like us and I felt so I just felt myself like glowing
of just feeling understood in a part of just a great community.
Like I said misery loves company but I love my spoonies.
(09:52):
And just to mention this too the difference between sympathy and empathy is sympathy is
having concern for someone else's suffering while empathy is actively sharing in their
emotional experience and to add on compassion means to suffer together.
Patti and Latin means to bear to suffer so compassion means you're bearing it together.
(10:18):
So if you personally haven't experienced a similar situation or feeling as a spoonie
or as someone else you can still have sympathy and compassion for someone going through pain.
So now that you get the spoon theory and let's say you've shared it with your close ones
or sent them this podcast to save you some time now what now you create a roadmap shout
(10:43):
out again to my therapist for this advice roadmaps are the steps and instructions you
know ahead of time so that if you're facing a detour or if there's a crash up ahead you
know what will help you stay on the right path you need to understand your own map or instruction
manual what have you because you are then going to share it with your close friends
(11:05):
and family whomever your support system is so that when you're at the beginning of a
spiral or on a brink of a panic attack or a flare up you don't have to use the effort
to explain how they can help in the moment it saves you time and energy and emotional
exhaustion it gives your support system the opportunity and ability to take care of you
(11:29):
and it affirms the positive truth that you can ask for help and be seen in the darkness
and not lose your relationships it's so vulnerable asking for what you want is so nerve wracking
asking for what you need is a whole scarier level of vulnerability those with a fear of
(11:52):
abandonment or trust issues this is fantastic practice to step into security in your situation
because you know what you need and you know the things you will sacrifice in order to
get that but as scary as it is it is better for you to ask and clarify and then be let
(12:14):
down than to live and distrust and distance yourself from your closest people and the
roadmap instruction manual again whatever you want to call it is for all relationships
not just for people with chronic pain or illness the roadmap really works when you introduce
it in a neutral setting because if you try to explain it during the heat of the moment
(12:37):
it's kind of defeating the purpose because you're trying to be proactive to prevent
things from getting worse or from spiraling or flaring up for example let's say it's
common for you to isolate yourself when you're in a depressive mood or even if you're let's
say on your period a roadmap step and be having a specific emoji that signals to your friend
(12:59):
that hey I'm starting to feel down but don't really want to reach out or engage in anything
but I think I need some help and I've just been like in my bed for three days straight
and instead of typing this all out when you're low on energy you can just send a black heart
or a broccoli emoji and your friend will instantly understand and then it's kind of on them to
(13:20):
then reach out to you interact with you or see if they can help.
Another instance is in romantic relationships let's say you're out with your date and they
run into an ex and they talk just for a little bit and say goodbye but you're feeling a little
insecure either from trust or past relationships, physical insecurity or the vibe is just off
(13:43):
and awkward.
If you've explained before how you might need some random words of affirmation or a PDA
touch point out of your feelings not the situation it's less personal and more hey can you meet
this need for me in the moment because if they've already agreed and understood to giving
some affirmation before it takes the brunt work out of explaining complicated or vulnerable
(14:08):
emotions in the situation.
I'm a big fan of code words for this reason you can say snickerdoodle or pineapple and
that can mean a whole emotional backstory and instruction manual without having to re-explain
or get into the nitty gritty of why you're feeling a certain way and usually takes any
(14:30):
guesswork passive aggression or questions out of the situation plus how great is it
when people just get you without you having to explain everything this is kind of connecting
that to the pain and the hurt of misunderstanding of just taking the little extra time needed
(14:52):
to just send an emoji or say a code word.
And for a third example I mentioned this in episode five of how to feel bad and have
a good time but let's say you have a dynamic disability which means that some days look
different than others and you could be needing a cane or wheelchair and then other days you
(15:12):
can be like frolicking in a field.
For those of you who don't know that that exists this is the PSA that can exist for
people and it's very hard to explain sometimes so things like this make it a lot easier.
So let's say you have a dynamic disability or have been in extra pain or dealing with
sickness recently and you have to leave a party or event early instead of stressing out
(15:36):
that you're going to offend the host or having to explain the situation to your friends you've
put it in the manual the roadmap and can leave early or come up with an exit plan ahead of
time depending on your illness or pain sometimes you can estimate how many spoons you have
or how much energy you can expend but sometimes you underestimate how much something will
(15:58):
take from you or things happen that you could never have prepared for and this is why a
roadmap a game plan is so so helpful.
When I started implementing these in my own relationships I noticed how less anxious I
was.
There's a correlation between pain and anxiety and depression scientifically but I think
(16:20):
it's so common for people to not want to share their pain with so many people because not
only is it personal and emotionally taxing but you don't always want to bring people
into the hurt.
I know I felt like this because I was in literal darkness so pained from light that I had my
blackout curtains closed lights were off everywhere I can still to this day tell you how many
(16:46):
lights there are in every room of my house because I could see like the light coming
from the bottom of my mouse on my computer so I had all these lights off screens were
out there dimmest there was no sun coming into the house and that gets depressing so
fast and as hard as it was to ask my people to sit in the darkness with me it was so symbolic
(17:11):
of what it truly was to bear that suffering with someone because you're inviting them
into the pain with you and when you're going through pain illness or grief it feels so
heavy so sad there's this like tangible weight and aura like almost like a fog that you feel
(17:37):
and you're in it so often understanding the like kind of like evil darkness of it all
that you don't want anyone else to feel how you're feeling it feels so kind of powerful
that it feels contagious in a way but I want you to remind yourself that suffering shared
(17:59):
is suffering cut in half while shared joy is joy doubled and if the people you invite
in can't handle parts of your suffering if they can't bear it with you if they can't
be around you they're adding to your suffering if you invite them in and they're making
it harder on you and you'll learn real fast who is wasting your spoons and who you'd
(18:23):
gladly give them up for that's what Christine was saying before too is that there's a beauty
in the forced decision and it's so easy to see what is good for you what gives you joy
what fills up your cup rather than what kind of drains your life away and so there's no
feeling of like wasting your spoon with someone you love and that's something to also remind
(18:48):
your friends and family is that you're choosing to spend time with them it's not just like
I have extra time to spare you don't have that and so it's this intentional time together
and that's special asking people to like read your roadmap or even take time to understand
you it will take vulnerability and it takes understanding yourself but it will greatly
(19:13):
help in the moment so that you don't spiral self-destruct or have to go through more pain
than what's necessary so get those emojis get those roadmaps take a few minutes maybe
after you listen to this episode and just come up with a few things that you know you
need in the heat of the moment whether that's space affirmation snacks whether that's like
(19:40):
a back rub or even just like a playlist that you have on hand that you can send your friends
so that when you're having a bad day they can send you a song from that playlist and
you'll kind of be like oh yeah that does make me feel better okay on to the next I'm trying
to keep this episode a little short so the second piece of advice I have for spoonies
(20:00):
is summarized as this with urgency find a capable understanding doctor or doctors I'm
a little ashamed at how long it took me to see a pain specialist because I thought I
knew what the problem was and was trying to go the route that I thought best and obviously
hindsight is 2020 but I could have saved myself a lot of time and trouble if I had started
(20:22):
seeking help through medical professionals because finding people who can find answers
for you is one of the quickest ways to decrease your suffering call your insurance and ask
for a case manager or nurse case manager apply for disability if you can buy for programs
that will save you time and money if possible put in the work for things that will actually
(20:45):
pay off in the long run medical services cost money trust me I'm very aware of that but
your life is worth it is worth the fight and headache for healthcare additionally medication
is not inherently evil yes there's corruption yes horrible side effects yes pricey and unsustainable
(21:07):
medication can just be a bandaid for an underlying issue but my take is that before you throw
in the towel before you realize you're wasting away in pain medication can provide respite
even a for a moment and in that piece or decreased pain you can then borrow time and energy to
(21:29):
understand and attack the underlying issue medication can hopefully give you the space
you need to then find clarity to then get some answers and hopefully that can lead to
healing and to joy in your life I know the US healthcare system is pretty corrupt but
there are amazing physicians out there and there's medication that will help and not
(21:54):
hurt you finding them is hard sometimes but it is worth it get on it get on it I don't
know where I don't know what that's coming from but get on it okay and for my able-bodied
healthy people taking this step off a spoonies plate can be life-giving as dramatic as that
(22:14):
sounds think about someone having only 10 spoons to spend in a day and calling insurance
takes a third of them away you could be giving so many spoons to your friend just by offering
to call their doctor's office to see if your friend can get an earlier appointment talk
about a niche love language right there it's things like this that you don't normally think
(22:35):
about when you're just living a normal healthy life but I really encourage you that if you
are healthy and have some extra spoons to spare to reach out to the people in your life that
are running low on spoons or that you think might be running low on spoons and ask them
how you can help we're reaching the end here but so far we've talked about spoon theory
(22:57):
and how to explain what life is like living with chronic pain or illness explain how roadmaps
can prevent you from spiraling lessen the pain and safeguard your relationships and
as much headache that it can be seek good health care and don't shy away from trying
medication just because it isn't natural or that there is potential side effects obviously
(23:20):
take advice from medical professionals but medication can buy you a safe space and physicians
can find the answers you need or at least get you going in the right direction the last
portion I am sharing is encouragement for my spoonies and if you aren't a spoonie this
is really good advice well not me saying this is really good advice it is my own advice
(23:43):
but even if you're not a spoonie I think you should listen anyway because I think it's
good advice no matter where you are in your life have grace for yourself some days you're
going to want a different body a different life but don't let hate of the situation turn
into hate for yourself giving yourself grace means accepting the sucky parts as sucky and
(24:10):
if you make a mistake making the next best move right after giving yourself grace looks
like giving credit to yourself for all that you're going through and affirming your good
fight giving yourself grace also looks like telling yourself it's okay to rest your purpose
is not in your productivity you are not what you do I'll say that again your purpose is
(24:37):
not in your productivity you are surviving and preserving your heart fighting can look
like filling up your water and going back to the couch taking care of yourself can look
like staying in bed all day not wasting time to shower be confident in your purpose not
your productivity lastly hope something I was in desperate need of hope was definitely
(25:06):
one of those things in life that I didn't really understand until it was slipping away
I think you can be in despair and not give up and I think that because I lived like that
for a while I needed someone to say it will get better it will end it will change your life will
(25:27):
not look like this forever also you are so much more than just what you're going through just
you're suffering and there's anxiety because when you're dealing with chronic pain or illness
it feels permanent whereas if you get your period you know that the cramps bleeding
pain will last a week and so when your period starts again you're not freaking out that it'll
(25:51):
last forever you're not mentally taxed trying to imagine every day without limiting debilitating
pain but with chronic pain or illness pain and problems shrink your thoughts and dreams and
hopes of a desired future it's like putting blinders on because you have to focus on today
(26:13):
and surviving this flare up or surviving this migraine hope can seem fleeting but let me tell
you how it still brings me to tears when I think about my friends Elizabeth was the first one
and like I can see the moment so clear but when I think about my friends telling me that they were
(26:36):
holding hope for me that I didn't have to try to have hope I didn't have to pray or kindle my
faith because they were holding the hope in my stead so let me tell you today that if you're in
despair if you've lost hope or are losing it I'm holding it right here for you and when you need it
(26:58):
you know that I've got an endless amount waiting for you it's right here so just focus on tending
to your needs today giving grace to yourself and spend your spoons with intention fully
comprehending how great it is to have spoons to spend and to have great things to spend them on
(27:18):
so here's to your spoons to your health to giving yourself grace and here's to getting better bye
okay okay for real serious love you bye
I'm Savannah Harding and this is Getting Better.
(00:10):
Hi, welcome back to Getting Better Pod, a place for health and healing.
It's been a while since I've released an episode, but I've been busy in a good way.
I'll get into it in another episode, but my eye has been doing so much better and I've
(00:32):
started a full-time job and life has been going well and it's been busy.
So I'm excited to be back here recording an episode.
In today's episode, should have been the first I released because it's at the core of the
why behind Getting Better.
The why is to help others who are going through hardship.
(00:54):
Today specifically health hardship because I myself have gone through health issues,
multiple surgeries, and today's focus, chronic pain and illness.
I haven't shared my full health history here, my eye history.
That's coming out a later time.
But what you need to know is that for the last four years, my right eye has been at its worst.
(01:16):
Currently, it is doing okay and like I said, we'll get into that later.
But for the past few years, I have struggled with daily migraines, migraines that don't
stop.
Waking up with pain, not being able to sleep because of pain, not being able to even cry
for years because it would cause me more pain.
And if you have questions about that, listen to episode number one about crying with confidence.
(01:41):
But I had to wear sunglasses all day at night and inside my own house.
I had to wear hats all the time to block the sun and I couldn't look at screens or work
at all for a time because my eyes were unable to focus and the pain was debilitating.
It was unbearable.
And this is just a slight summary of the last few years filled with pain and countless doctor's
(02:05):
appointments.
They use in nights alone questioning if life would ever go back to normal, quote, normal,
and if I would ever even get better.
And so was born the name of this podcast because once you begin a health journey, it's clear
that there is no final ultimate health destination.
(02:25):
We're always working towards a life of health.
We're constantly getting better.
And today, I want to introduce the spoon theory.
Like I said, I wanted this to be one of the first episodes because it really helped me
with my own understanding and just kind of narrative of my chronic pain.
(02:47):
With the spoon theory, I also want to give some advice from my own experience about dealing
with chronic pain because even though you might not be able to cure your chronic illness
or heal your disabilities, knowing how to lessen the pain and learn how to cope is a
win in my book.
And if you don't personally struggle with chronic pain or health issues, this episode
(03:08):
will still give you a greater insight into coping with hardship and will increase your
empathy and sympathy for those in your life who are forced to deal with health issues.
And I'm not saying this to put a curse on your life, but you will face health issues
and hardships in your life.
It's inevitable.
That's just the deal in life.
(03:29):
You get the gift of the good and the hardship of the bad.
But my hope for you is that you don't have to go through the physical pain and grief early
in life.
And though I am able to see the wisdom and silver lining through my own struggles, I
would trade it all in a heartbeat to get me more of time that I felt like I wasted in
(03:50):
this pain, to get more of time living instead of feeling like I'm barely surviving.
So whether or not you're going through or living with pain or illness, this episode
will shed some light on what it's like to live with chronic pain and some tips on how
to cope.
When I learned about the spoon theory, shout out to my awesome therapist for introducing
(04:14):
it to me.
My whole outlook on my situation changed.
I felt seen knowing others experienced this pain too.
And my relationships grew because I had this new tool to help explain what I was going
through and it allowed for a deeper understanding and empathy, which is so priceless when you're
(04:35):
fighting on your own.
And just to clarify for those of you who might not understand, I wasn't physically alone.
I had immense support, which I'm so grateful for.
But there is inherent loneliness in pain and suffering because you alone have to feel everything.
Put the effort in, seek help and personal understanding.
(04:57):
No one else can do it for you.
You have to face your own battles.
This is the kind of loneliness I'm referring to.
But back to the spoon theory.
The spoon theory was coined by Christine Miserandino, a woman with lupus, which is a chronic autoimmune
disease, one that makes your immune system attack your own healthy organs and tissues.
(05:20):
It's a very brutal disease.
And she, Christine, shared an article in 2003 about her spoon theory.
The spoon theory is a metaphor.
Spoons are your currency of energy for the day.
It's spoons because Christine was sitting at her kitchen table with her college roommate
at the time when she came up with this metaphor.
(05:41):
So a normal, quote, healthy person has unlimited spoons.
But people with chronic pain or illness wake up with a few spoons, let's say 10 to 15.
Some days you'll have more than others, but it takes one spoon to get dressed, two spoons
to wash your face and brush your teeth, three spoons to go to a doctor's appointment, etc.
(06:05):
We all have finite time to choose and prioritize our spoons to fit our needs and wants.
But spoonies, those who identify with chronic illness or pain, must dole out their spoons
wisely.
Spoons have to be saved for needs before wants.
Spoons don't roll over to the next day and your calculations can be off.
(06:27):
And what should have taken only two spoons might have needed four, or there could have
been an emergency and you needed 10.
And there have been days that I've woken up with 10, 20, 30 spoons.
Other days it's been three, two, and even one spoon.
You can't forge more spoons.
(06:48):
And sadly when you run out there can be horrible effects like a whole body flare up, panic
attack or limitations that then affect the next few days.
And Christine described to her roommate that the difference between being sick and being
healthy is having to consciously think about things when the rest of the world doesn't
(07:09):
have to.
And it sucks to have to say no to things, to have limitations and feel a lack of freedom.
But Christine also shared her wisdom that she sees this as a blessing because she's
been forced to think about everything she chooses to do.
You're not going to waste your spoons because that's not an option anymore.
(07:32):
The spoon theory helps relay your energy levels in a more tangible and I think less offensive
way.
You can say, I have enough spoons for coffee but not for dinner with you.
Or to yourself you can say, okay I'm not willing to spend my spoons on brunch with this like
pseudo friend but I would rather spend them on something that brings me more joy.
(07:58):
Spoonies don't have the freedom to choose how many spoons they get to spend or what to
spend them on.
And this helps in relationships so the person on the receiving end of those spoons can understand
that it's not that a spoonie doesn't want to spend time with them, it's just that they
don't have the energy or resources to.
(08:19):
It's nothing personal.
In fact, the spoonie is the one in pain and the spoon theory helps share that message
without feeling like one person is a victim in the situation.
Be grateful if you've never had to count your spoons and if you have some extra maybe try
to share your energy and spoons with someone who's running low.
(08:42):
And now some spoonies might disagree with me but I think it's totally okay for quote
normal average healthy able bodied people to use this metaphor in conversation too because
shared terminology or phrases help you stay on the same page in understanding and helps
you not drift into hurtful misunderstanding.
(09:05):
And misery loves company and after I heard about spoonies I felt like I was in a club
with people who understood what it was like to have little to give a lot to go through
and a heart to live a life of joy no matter what with no judgment and with all the empathy.
In fact, I met a spoonie on a plane before I heard someone call people with chronic pain
(09:29):
and illness spoonies and I ended up dropping her off at another spoonies house and she
told her friend look she's a spoonie like us and I felt so I just felt myself like glowing
of just feeling understood in a part of just a great community.
Like I said misery loves company but I love my spoonies.
(09:52):
And just to mention this too the difference between sympathy and empathy is sympathy is
having concern for someone else's suffering while empathy is actively sharing in their
emotional experience and to add on compassion means to suffer together.
Patti and Latin means to bear to suffer so compassion means you're bearing it together.
(10:18):
So if you personally haven't experienced a similar situation or feeling as a spoonie
or as someone else you can still have sympathy and compassion for someone going through pain.
So now that you get the spoon theory and let's say you've shared it with your close ones
or sent them this podcast to save you some time now what now you create a roadmap shout
(10:43):
out again to my therapist for this advice roadmaps are the steps and instructions you
know ahead of time so that if you're facing a detour or if there's a crash up ahead you
know what will help you stay on the right path you need to understand your own map or instruction
manual what have you because you are then going to share it with your close friends
(11:05):
and family whomever your support system is so that when you're at the beginning of a
spiral or on a brink of a panic attack or a flare up you don't have to use the effort
to explain how they can help in the moment it saves you time and energy and emotional
exhaustion it gives your support system the opportunity and ability to take care of you
(11:29):
and it affirms the positive truth that you can ask for help and be seen in the darkness
and not lose your relationships it's so vulnerable asking for what you want is so nerve wracking
asking for what you need is a whole scarier level of vulnerability those with a fear of
(11:52):
abandonment or trust issues this is fantastic practice to step into security in your situation
because you know what you need and you know the things you will sacrifice in order to
get that but as scary as it is it is better for you to ask and clarify and then be let
(12:14):
down than to live and distrust and distance yourself from your closest people and the
roadmap instruction manual again whatever you want to call it is for all relationships
not just for people with chronic pain or illness the roadmap really works when you introduce
it in a neutral setting because if you try to explain it during the heat of the moment
(12:37):
it's kind of defeating the purpose because you're trying to be proactive to prevent
things from getting worse or from spiraling or flaring up for example let's say it's
common for you to isolate yourself when you're in a depressive mood or even if you're let's
say on your period a roadmap step and be having a specific emoji that signals to your friend
(12:59):
that hey I'm starting to feel down but don't really want to reach out or engage in anything
but I think I need some help and I've just been like in my bed for three days straight
and instead of typing this all out when you're low on energy you can just send a black heart
or a broccoli emoji and your friend will instantly understand and then it's kind of on them to
(13:20):
then reach out to you interact with you or see if they can help.
Another instance is in romantic relationships let's say you're out with your date and they
run into an ex and they talk just for a little bit and say goodbye but you're feeling a little
insecure either from trust or past relationships, physical insecurity or the vibe is just off
(13:43):
and awkward.
If you've explained before how you might need some random words of affirmation or a PDA
touch point out of your feelings not the situation it's less personal and more hey can you meet
this need for me in the moment because if they've already agreed and understood to giving
some affirmation before it takes the brunt work out of explaining complicated or vulnerable
(14:08):
emotions in the situation.
I'm a big fan of code words for this reason you can say snickerdoodle or pineapple and
that can mean a whole emotional backstory and instruction manual without having to re-explain
or get into the nitty gritty of why you're feeling a certain way and usually takes any
(14:30):
guesswork passive aggression or questions out of the situation plus how great is it
when people just get you without you having to explain everything this is kind of connecting
that to the pain and the hurt of misunderstanding of just taking the little extra time needed
(14:52):
to just send an emoji or say a code word.
And for a third example I mentioned this in episode five of how to feel bad and have
a good time but let's say you have a dynamic disability which means that some days look
different than others and you could be needing a cane or wheelchair and then other days you
(15:12):
can be like frolicking in a field.
For those of you who don't know that that exists this is the PSA that can exist for
people and it's very hard to explain sometimes so things like this make it a lot easier.
So let's say you have a dynamic disability or have been in extra pain or dealing with
sickness recently and you have to leave a party or event early instead of stressing out
(15:36):
that you're going to offend the host or having to explain the situation to your friends you've
put it in the manual the roadmap and can leave early or come up with an exit plan ahead of
time depending on your illness or pain sometimes you can estimate how many spoons you have
or how much energy you can expend but sometimes you underestimate how much something will
(15:58):
take from you or things happen that you could never have prepared for and this is why a
roadmap a game plan is so so helpful.
When I started implementing these in my own relationships I noticed how less anxious I
was.
There's a correlation between pain and anxiety and depression scientifically but I think
(16:20):
it's so common for people to not want to share their pain with so many people because not
only is it personal and emotionally taxing but you don't always want to bring people
into the hurt.
I know I felt like this because I was in literal darkness so pained from light that I had my
blackout curtains closed lights were off everywhere I can still to this day tell you how many
(16:46):
lights there are in every room of my house because I could see like the light coming
from the bottom of my mouse on my computer so I had all these lights off screens were
out there dimmest there was no sun coming into the house and that gets depressing so
fast and as hard as it was to ask my people to sit in the darkness with me it was so symbolic
(17:11):
of what it truly was to bear that suffering with someone because you're inviting them
into the pain with you and when you're going through pain illness or grief it feels so
heavy so sad there's this like tangible weight and aura like almost like a fog that you feel
(17:37):
and you're in it so often understanding the like kind of like evil darkness of it all
that you don't want anyone else to feel how you're feeling it feels so kind of powerful
that it feels contagious in a way but I want you to remind yourself that suffering shared
(17:59):
is suffering cut in half while shared joy is joy doubled and if the people you invite
in can't handle parts of your suffering if they can't bear it with you if they can't
be around you they're adding to your suffering if you invite them in and they're making
it harder on you and you'll learn real fast who is wasting your spoons and who you'd
(18:23):
gladly give them up for that's what Christine was saying before too is that there's a beauty
in the forced decision and it's so easy to see what is good for you what gives you joy
what fills up your cup rather than what kind of drains your life away and so there's no
feeling of like wasting your spoon with someone you love and that's something to also remind
(18:48):
your friends and family is that you're choosing to spend time with them it's not just like
I have extra time to spare you don't have that and so it's this intentional time together
and that's special asking people to like read your roadmap or even take time to understand
you it will take vulnerability and it takes understanding yourself but it will greatly
(19:13):
help in the moment so that you don't spiral self-destruct or have to go through more pain
than what's necessary so get those emojis get those roadmaps take a few minutes maybe
after you listen to this episode and just come up with a few things that you know you
need in the heat of the moment whether that's space affirmation snacks whether that's like
(19:40):
a back rub or even just like a playlist that you have on hand that you can send your friends
so that when you're having a bad day they can send you a song from that playlist and
you'll kind of be like oh yeah that does make me feel better okay on to the next I'm trying
to keep this episode a little short so the second piece of advice I have for spoonies
(20:00):
is summarized as this with urgency find a capable understanding doctor or doctors I'm
a little ashamed at how long it took me to see a pain specialist because I thought I
knew what the problem was and was trying to go the route that I thought best and obviously
hindsight is 2020 but I could have saved myself a lot of time and trouble if I had started
(20:22):
seeking help through medical professionals because finding people who can find answers
for you is one of the quickest ways to decrease your suffering call your insurance and ask
for a case manager or nurse case manager apply for disability if you can buy for programs
that will save you time and money if possible put in the work for things that will actually
(20:45):
pay off in the long run medical services cost money trust me I'm very aware of that but
your life is worth it is worth the fight and headache for healthcare additionally medication
is not inherently evil yes there's corruption yes horrible side effects yes pricey and unsustainable
(21:07):
medication can just be a bandaid for an underlying issue but my take is that before you throw
in the towel before you realize you're wasting away in pain medication can provide respite
even a for a moment and in that piece or decreased pain you can then borrow time and energy to
(21:29):
understand and attack the underlying issue medication can hopefully give you the space
you need to then find clarity to then get some answers and hopefully that can lead to
healing and to joy in your life I know the US healthcare system is pretty corrupt but
there are amazing physicians out there and there's medication that will help and not
(21:54):
hurt you finding them is hard sometimes but it is worth it get on it get on it I don't
know where I don't know what that's coming from but get on it okay and for my able-bodied
healthy people taking this step off a spoonies plate can be life-giving as dramatic as that
(22:14):
sounds think about someone having only 10 spoons to spend in a day and calling insurance
takes a third of them away you could be giving so many spoons to your friend just by offering
to call their doctor's office to see if your friend can get an earlier appointment talk
about a niche love language right there it's things like this that you don't normally think
(22:35):
about when you're just living a normal healthy life but I really encourage you that if you
are healthy and have some extra spoons to spare to reach out to the people in your life that
are running low on spoons or that you think might be running low on spoons and ask them
how you can help we're reaching the end here but so far we've talked about spoon theory
(22:57):
and how to explain what life is like living with chronic pain or illness explain how roadmaps
can prevent you from spiraling lessen the pain and safeguard your relationships and
as much headache that it can be seek good health care and don't shy away from trying
medication just because it isn't natural or that there is potential side effects obviously
(23:20):
take advice from medical professionals but medication can buy you a safe space and physicians
can find the answers you need or at least get you going in the right direction the last
portion I am sharing is encouragement for my spoonies and if you aren't a spoonie this
is really good advice well not me saying this is really good advice it is my own advice
(23:43):
but even if you're not a spoonie I think you should listen anyway because I think it's
good advice no matter where you are in your life have grace for yourself some days you're
going to want a different body a different life but don't let hate of the situation turn
into hate for yourself giving yourself grace means accepting the sucky parts as sucky and
(24:10):
if you make a mistake making the next best move right after giving yourself grace looks
like giving credit to yourself for all that you're going through and affirming your good
fight giving yourself grace also looks like telling yourself it's okay to rest your purpose
is not in your productivity you are not what you do I'll say that again your purpose is
(24:37):
not in your productivity you are surviving and preserving your heart fighting can look
like filling up your water and going back to the couch taking care of yourself can look
like staying in bed all day not wasting time to shower be confident in your purpose not
your productivity lastly hope something I was in desperate need of hope was definitely
(25:06):
one of those things in life that I didn't really understand until it was slipping away
I think you can be in despair and not give up and I think that because I lived like that
for a while I needed someone to say it will get better it will end it will change your life will
(25:27):
not look like this forever also you are so much more than just what you're going through just
you're suffering and there's anxiety because when you're dealing with chronic pain or illness
it feels permanent whereas if you get your period you know that the cramps bleeding
pain will last a week and so when your period starts again you're not freaking out that it'll
(25:51):
last forever you're not mentally taxed trying to imagine every day without limiting debilitating
pain but with chronic pain or illness pain and problems shrink your thoughts and dreams and
hopes of a desired future it's like putting blinders on because you have to focus on today
(26:13):
and surviving this flare up or surviving this migraine hope can seem fleeting but let me tell
you how it still brings me to tears when I think about my friends Elizabeth was the first one
and like I can see the moment so clear but when I think about my friends telling me that they were
(26:36):
holding hope for me that I didn't have to try to have hope I didn't have to pray or kindle my
faith because they were holding the hope in my stead so let me tell you today that if you're in
despair if you've lost hope or are losing it I'm holding it right here for you and when you need it
(26:58):
you know that I've got an endless amount waiting for you it's right here so just focus on tending
to your needs today giving grace to yourself and spend your spoons with intention fully
comprehending how great it is to have spoons to spend and to have great things to spend them on
(27:18):
so here's to your spoons to your health to giving yourself grace and here's to getting better bye
okay okay for real serious love you bye
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