[MUSIC]
All right, it looks like we're ready.
Jeannie, you want to get started?
Sure. Hi everybody. Thanks for coming to our webinar tonight or whatever time it
may be where you are. We hope we have participation throughout the country and
anywhere around the world. It's open to anyone. We are excited to have
Ashley Williams here who is a licensed clinical social worker and also a
Desmoid tumor patient who is in active treatment, actively
dealing with the disease, and all of the coping skills and
mental health challenges that we have in this journey. I'm
Jeannie Whiting, I'm co founder and executive director of the
Desmoid tumor Research Foundation. We were just
commenting among ourselves that we're so excited about this
series on mental health tools, because we've never done
anything as comprehensive as this before.
And we've had tremendous feedback
about how meaningful it is to the patients.
So we hope that you find something, some new tools,
some new coping skills, some new ideas
that will give you peace and help in your journey
with your Desmoi tumor.
And be aware that this will be recorded
and be made available on our website.
So if you want to listen again, you'll be able to do that.
I'll turn the time now over to our Director of Operations,
Lynn Hernandez, who will introduce our speaker.
Lynn.
- All right, great.
Thanks so much, Jeannie.
So I would like to introduce our presenter this evening.
You probably recognize this name in this space
since this is a series.
So Ashley Williams is a licensed clinical social worker
and trauma counselor from South Florida.
Back in 2015, she was diagnosed with a Desmoid tumor
in her left leg.
Since then, she's become passionate
about helping patients heal from the trauma
of their diagnosis and treatment.
Her focus is on those with Desmoids, cancer,
chronic illness, and other rare diseases.
Having undergone multiple rounds of treatment herself,
Ashley believes in a holistic mind and body approach.
She continues to help individuals from these communities
work through their trauma in her counseling practice.
Welcome, Ashley.
So before we get started,
I have a few instructions for our attendees.
We welcome questions via the Q&A.
You'll see the Q&A icon at the bottom of your screen.
So if you have a question for Ashley, please share it there
and she will try to get to it at the end of her presentation.
Also, you'll see that there's a chat function open
for your use to communicate with the community.
Again, there's a little chat button below.
If you click on that and you would like to share something
with the community, please do.
This is unmonitored the chat.
So please don't post any questions for us in there,
but we would love to have you share with the community.
So now I will hand things over to Ashley.
- Thank you so much, Lynn and Jeannie.
It is so nice to be back.
I love any time that I have the opportunity
to meet with the Des Moines community
and just talk about topics that I know so well.
As Jeannie shared, I am currently waiting for results
on my last round of active treatment.
So I know what it is to be going through this diagnosis
in the process, but have also worked for quite a bit
of time in the realm of trauma and trauma treatment
and mental health.
And so for today, our topic is going to be
on one of my favorite things.
It's gonna be on self-care.
I think that you can see my screen.
So we're just gonna move ahead.
With self-care, this is something that is so,
thank you very much, Lynn.
This is something that's so important for us
to talk about as Desmoid tumor patients
because our experience tends to be for the long haul.
And so how do we really take care of ourselves
throughout courses of treatment,
but also after treatment is over
and whenever we're in a survivorship and recovery phase?
As I've mentioned before,
I'm a licensed clinical social worker
and a certified clinical trauma professional.
All of the information that I'm sharing with you today
is intended to be informational and educational,
but it's important to run it by your medical professionals
and your own mental health professionals
who are with you on this journey
to see if some of the techniques and the strategies
that we talk about are going to work specifically for you.
Because even though I'm a mental health professional,
I am not your mental health professional,
so I don't know all of the details to your case,
but I'm hoping that some of these self-care strategies
will be very beneficial and things that will help
in really just bringing peace, calm, lower anxiety
to the Desmoid process.
So let's get started.
I'm sure many of you have talked about self-care before.
I'm sure many of you have seen images like this before
when talking about self-care,
but I do think it's really important to preface
the topic of self-care with an understanding
of why it's so important.
As a Desmoid patient, self-care can realistically
kind of be pushed to the side because in reality,
our diagnosis, our treatment, our medical needs
can be very time consuming and they can take up a lot
of time and energy in our lives away from work,
away from our family.
And so often we tend to,
like self-care is the first thing that's eliminated
because the thought is I already spend so much time on me.
I already spend so much time on my medical experience,
my medical journey.
And so when I'm not dealing with my Des Moines,
let me go ahead and actually be a participant
in the lives of the people around me.
And yes, that's very important,
but it's also important not to neglect self-care
because we feel like we're already so focused
on ourselves with our diagnosis.
And so today we're gonna talk about some strategies
of how can we focus on ourselves and our self-care
because as these images portray,
it's important for us to be able to take care
of ourselves first before we're able
to really give back to anybody else.
We've all been on a flight before
where we've heard the stewardess or the steward tell us,
you know, if the oxygen masks come down,
make sure you put yours on first
before you put on somebody else's.
Because if you put on somebody else's
and you neglect taking care of yourself,
that has the potential for really negative repercussions.
The image of a teapot is also really significant.
I like this one because if we look at ourselves
as the teapot, we need to make sure that we're full of tea
before we're able to pour it out
and really give to other people.
And so self-care is really about how do I invest in myself?
How do I pour into myself so that I can go out
and continue being an active participant in my life
and an active participant in the relationships in my life?
So I want to dispel a couple of myths about self-care
and talk a little bit about what self-care is
and what self-care isn't.
So according to this definition,
I'm sorry, my images are on this screen,
so I'm looking to the side,
but what self-care is, it says self-care is any activity
that we do deliberately in order to take care
of our mental, emotional, and physical health.
So self-care is action-oriented, self-care is a choice,
self-care is deliberate,
something that we incorporate into our lives intentionally.
There are some myths about what self-care is,
So let me just kind of dispel those right off of the bat.
The first one is that it's a one size fits all type situation.
Anytime we talk about self-care, it is inevitable
that there is going to be something associated
with like a bath or a spa.
And those things can definitely be self-care.
But I think culture has kind of given us this narrow view
of what self-care is and that it's more in line
of like pampering ourselves and taking care
of our physical body more than anything else.
And so while this may be considered self-care
for some people, there are so many different facets
of self-care and we're gonna talk about a few of them today.
Self-care isn't anything that soothes you.
Often we look at it from the perspective
of I just wanna feel better.
And so anything that makes me feel better
is going to be caring for myself.
But if we look at that category of anything that soothes us,
then we could be looking at alcohol,
we could be looking at drugs,
we could be looking at an excessive amount of anything
that in moderation might be okay
or might even be good for us,
but in excess is not good for us.
And so we're not looking for things
that soothe us necessarily.
We're looking for things that calm our nervous system,
but not necessarily things that soothe
the emotions that we're feeling
or trying to numb the emotions that we're feeling.
Self-care is not selfish or indulgent.
I know this is a major struggle for a lot of people
and this can be a major struggle for me too,
but self-care is not selfish.
Of course, we can look at it that way
because we're focusing on ourselves
and we're focusing on the things that we need
and how do I energize myself and fill myself up,
but it's not selfish, it's not indulgent.
it's actually very, very necessary thing
in order to avoid burnout, medical burnout,
desmoid burnout, and really continue
to be an active participant in our lives.
Self-care, I had this impression of like,
it takes a long time.
Like, I have to dedicate a whole day to go into the spa,
or I dedicate an hour to taking a bath.
And during busier seasons,
I might completely neglect self-care
because I just don't have the time to do it.
But in reality, self-care can be standing up
and taking a walk around the office during your workday,
taking a two-minute break, going to the kitchen
and actually eating lunch or eating dinner
at the time that you have allotted for you
during your workday.
They can be very simple, very time efficient,
things that we incorporate into our day
and don't require this big dedication of time
on our calendar.
Self-care is not always relaxing.
And I think we have that idea too,
of it's something that's just going to be
like tranquil and peace and calm.
But in reality, self-care can be engaging in sports.
Self-care can be engaging in friendly
and boundary debate with people.
There are a lot of different facets of self-care.
And so it's not always gonna be something
that's relaxing either.
It's gonna be something that's energizing.
And sometimes the things that energize us
are exhausting too.
And so it's really finding the balance
between those things,
but it's not necessarily just looking for ways to relax.
That's a part of it, but not the complete picture.
And finally, self-care shouldn't be used as a reward.
I have heard so many times I've done this myself,
where I'll tell myself, you know what, I exercise today,
so I deserve that cookie or I deserve that dessert.
And because I did something else,
that means now I can reward myself with self-care.
And it's something that I give back to myself
only when I've accomplished a goal
or I've achieved something.
I wanna take that mindset and that perspective
off the table because self-care is not a reward
for doing something or achieving something.
self-care is a necessity in order to make it
through this journey without feeling burnt out.
And again, with being able to really engage
and invest in our lives in a meaningful way.
So there are many different realms of self-care.
Today we're gonna be talking about some of the most basic.
And so we're gonna be looking a little bit deeper
into what does it mean to care for yourself physically,
emotionally, spiritually, socially, intellectually,
and self-care from a sensory perspective.
There are more topics and more realms that we can add here,
but these are the ones we're gonna focus on
for this evening.
I'm gonna pause here just for a minute
because I'd like everyone who has joined us,
if possible, to grab a piece of paper,
grab a pen, grab a journal,
something to write with, something to jot down.
Because when we talk about self-care,
It's great if we come up with like different topics
and different strategies to talk about,
but self-care requires action.
And so I wanna make sure that everybody who's joining us
leaves tonight with a self-care plan.
An action that is pertinent to you
or things that you would like to try to incorporate
into your self-care routine
and the intentionality of bringing this
into your daily life.
And so again, we're gonna be talking about
these six topics, you can put it across the top of the paper.
And then if there's something or a strategy that we talk about
that you think like, okay, I could try that, or that might
work for me, I want you to jot it down. If you think of
something specific or something that we talk about jogs your
memory, and it's not even necessarily something that we are
explicitly talking about, I want you to write it down so that by
the end of our session and our time today, we can all walk away
with a plan and some action steps for how and in what ways can we really begin to incorporate
this into our life. Okay, so the first one that we're going to talk about is physical self-care.
And I just want to preface that over the last three dealing with Des Moines sessions, we have
talked through a lot of strategies for physical self-care. And so I'm going to touch on some
of them tonight, but a lot of them are described much more in depth in previous sessions. In our
previous sessions, we've talked about dealing with trauma, dealing with trauma triggers,
dealing with grief, anxiety, fear, loneliness, just all of these emotions that can come up.
And in our first session, really the ones to follow, we've talked about how trauma affects
and lives in our bodies. And so whenever we experience something like our Desmoid diagnosis,
or we experience treatment that is scary and that is hard, our body reacts in a way of trying to
protect ourselves. Our body jumps into that fight or flight mode in an effort to protect ourselves.
And we've talked before about how it's very important once our body has kicked into that mode
to do practices or to engage in things that remind us that our body is safe or that we're in a safe
place if we are. And how do we bring our nervous system, the one that's responsible for
relaxing and for digesting and for resting, how do we bring that aspect of our nervous system back
online. And so when we talk about physical self-care, we're really going back to those principles of how
do I override my fight or flight nervous system that's creating anxiety, that's creating
hypervigilance, which means I'm just like very aware of all of the potential threats in my
surroundings. How do I kind of bring that back online so that I can bring rest to my nervous
system. I haven't talked about this word before, but this word
is essentially the definition for a lot of the strategies that
we've talked about in the last couple of sessions. It's called
introsception. And what that is, is it's the ability to sense
what is happening in our body. Whenever we go through
something challenging, whenever we experience a trauma, whenever
we are maybe not trying to feel what's going in and going on in
our bodies because it's painful, or because we're nauseous, or because we're sick, or
because we're affected by our treatments.
Our body's natural reaction to protect us is to kind of disconnect our brain and our
body so that we start to live inside of our heads, but we try to quiet the sensations
and the feelings that are going on in our body.
We live in a culture and a society that really believes in mind over matter.
And so it is imperative for us to master our bodies by mastering our intellect and our
brain function.
And when our bodies are telling us, hey, you need to slow down, you need to rest.
Often we can be praised for pushing our bodies past the point of what it's asking us to do.
if it's asking us to rest, pushing ourselves past that and not allowing our bodies to slow us down,
so to speak. And so when that happens, one of the most important things for us to do in regards to
physical self-care and calming the nervous system is how do I bring my awareness back to what's
going on inside of my body? How do I know what's happening here? That can be a really scary
prospect, but we've talked through a lot of strategies like you can see in the calming
the nervous system section of things like breathing. If I'm focusing on my breath, if I'm
focusing on my in-breath, if I'm feeling kind of the cool air against my nostrils as I'm expanding
my lungs, then this is a sensation that's taking place in my body that I'm bringing my awareness to
actively helping to heal that disconnection that's going on
between my brain and body.
Last time in the anxiety session,
we talked about something called body scans,
which is a form, progressive muscle relaxation
is a form of body scan,
which is essentially, let me take a moment.
Let me take five minutes and really bring my awareness
and my attention to how are my feet feeling right now?
Like what sensations are going on in my feet?
and let me like sit there for a moment
with my awareness on how my feet are feeling.
And then I can bring my awareness up to my legs,
then maybe my hips.
And I'm really taking in what is my body telling me
and what are the sensations in my body at the moment.
Grounding, we've talked about a technique called 54321,
which is whenever I am so out of touch with my body
and I'm operating just in my brain space,
how do I bring myself back to the present moment?
I don't know about you,
but whenever it comes to diagnosis and treatment,
oftentimes I find that my thoughts either take me
to the past of everything that I've been through,
all of the challenges I've had to walk through,
or it can bring me to the future
of really wondering what's gonna happen next.
How is this treatment gonna work?
What are my results gonna be?
And that can be very disregulating for our nervous system.
if we are focused on the future or on the past.
And so the grounding techniques really bring you back
to the present moment.
Earthing is another form of grounding.
And so that's essentially having your body
in touch with nature.
It's like sitting outside with your feet in the grass
or your feet in the sand.
And science actually tells us that whenever your feet
are in touch with a natural surface,
there's an exchange of electrons that actually help
to calm your nervous system.
And so being outside, being in nature, really engaging with the elements of nature is really significant for calming your nervous system.
And laughing and light heartedness is really important as well.
So when we talk about physical self care, some of the practices might seem a little vague, but also there's very tangible practices for how do we do introception?
How do we raise awareness to what's going on inside of our body?
And that's really drawing our attention to my breath, drawing my attention to sensations that I'm feeling, drawing attention to my sensory experience as it interacts with nature or as it interacts with something else.
I want to talk for a minute about sleep hygiene.
It is so important whenever we're talking about physical self-care
because sleep is something that is really difficult.
It can be really difficult, especially if you're on treatment or if you're in pain.
And so there are some strategies, some evidence-based strategies for tips
that help us whenever we are trying to get the seven to nine hours of sleep
and night that were recommended.
So the first is checking your environment.
Sleeping in a colder environment that is completely dark
is what's recommended and suggested.
Using your bed only for sleep is very like active
in the science of sleep hygiene.
And so we tend to use our beds to watch TV
or to just hang out sometimes,
or that's where we read a book
or that's where we do something else.
But if you're struggling to sleep,
the recommendation is only using your bed
for sleeping and the attempt to sleep.
Because then there's a connection in your brain
that's actually made that this is where I sleep.
Avoiding napping because it can mess
with the rhythm of your sleep,
avoiding alcohol, caffeine and nicotine.
These are all things that turn your nervous system on.
And so if your nervous system is turned on,
if your body's developing cortisol and adrenaline,
then those are going to keep you up
and keep you from getting a good night's sleep.
This one was a game changer for me.
And so it's, I'm like excited to share it
'cause I didn't know it before I learned it,
but don't force yourself to go to sleep.
If you are trying to go to sleep
and you find that you're unable to,
the science says give yourself 15 minutes
to try to fall asleep.
If you're not asleep within 15 minutes,
it's best for you to get up and perform a task.
Now it's recommended that we keep a list
of very small tasks, I mean, on a pad by your bed
or somewhere where you can access it.
Something like unloading the dishwasher,
something like folding laundry,
something that's time limited
that you can dedicate 15, 20 minutes to,
to complete the task and then go back to bed and try again.
But if we're having difficulty sleeping,
Staying in our beds gives our brain the signal that,
okay, this isn't necessarily equated with sleep.
And so if I get up for periods of time
and I try to finish a task,
then I come back and try to sleep.
That's actually an evidence-based practice
for helping to get to sleep whenever you're struggling to.
Avoiding blue light like your phone or your computer
or your TV an hour before bed and following a sleep schedule.
And so going to bed and planning to go to bed
at the same time every night.
Sleep is very important,
especially for those who are on active treatment.
And I know you might be thinking,
some of you might like sleep a lot
and some of you might not sleep very much,
but especially being on active treatment,
sleep is the time whenever our body
switches into that rest and digest mode.
And so that's the time when our body's really given
an opportunity and a chance to recover
from everything that it's endured during the day.
The last ones I'll go through quickly
because we've heard them before,
we're all involved in the medical space.
And so hydration is very important
for physical self-care, nutrition.
And I wanna kind of separate hydration and nutrition
a little bit from like maintaining your weight
or maintaining your appearance.
I think whenever we talk about things
like hydration and nutrition,
It's normally in the realm of dieting
or being a certain weight for health reasons,
but I'm looking at it more from,
I'm not taking care of my body
because my body is how I appear to the world.
I'm taking care of my body because it's my home.
And how do I create an environment for my body
that my nervous system can feel safe
and my nervous system can feel calm?
And so eating a well-balanced diet
is going to be different for everybody.
For me specifically, I know food sensitivities
play really heavily into what does that look like?
And so certain foods might activate your nervous system
where they don't activate mine or vice versa.
And so being aware of these things can be really powerful
in deactivating your nervous system.
Intuitive eating is a form of interoception.
So that word of like, how do I get in touch
with what's going on inside of my body?
Intuitive eating is how do I develop awareness
towards hunger cues?
Like how do I know when I'm hungry
or how do I know when I'm full?
And so if interoception feels like a little bit
of a vague concept, intuitive eating can be
a really powerful way to kind of jump into it
because we're trying to listen to our body
to give us cues for when we're hungry or when we're full.
And so if we do that, that's a great way to start learning
how to respond and react and listen to our body's cues.
Now I know it's not that easy for everyone.
Some of you who are on active treatment,
eating might be like impossible or feel impossible.
And so rather than intuitive eating,
if I'm doing that and I'm on treatment
and I have no appetite, then how am I supposed to do that?
Well, that's where I really encourage you to touch base
with your healthcare professional
because there are different strategies
for ensuring that you're getting enough food
because that's also obviously really important
in your physical health.
Keeping routines, so keeping your medical routines
and keeping a plan throughout the day
is really valuable for physical self-care.
And then finally, movement.
We learn and the research is telling us
that the entire purpose of our brain is to produce movement
and that movement is really the only way
that we interact with the world.
And so again, when we talk about movement,
we tend to think about it in terms of exercise
and exercise only,
but I'm not talking about exercise necessarily.
Can exercise be a form of movement? 100%.
But when I talk about movement,
I'm also talking about things like,
I'm gonna dance around the kitchen while I'm cooking dinner,
or I'm going to do stretches in my room
'cause that's what feels good to my body.
I'm gonna stand up during my work day
and I'm gonna take a walk around the office every hour
and I'm gonna take laps just to get my body moving.
It can be very small things.
I remember when I was on treatment, when I was on chemo,
there were days that I felt so sick
and my like objective was I'm gonna get up out of this bed,
gonna go downstairs, I'm gonna get myself a cup of water
and that's gonna be like my big outing for the day.
And so even something like that,
it doesn't have to be a commitment
like running a mile every day.
it could be something very, very small.
The next area we're gonna talk about
is emotional self-care.
And the first thing that comes to mind is self-compassion.
With our diagnosis, I think being kind to ourselves
can sometimes be really challenging
because for many, I know I've spoken to many people
who share the sentiment of like, my body has betrayed me.
And so how do I be kind to myself
and how do I be kind to my body?
We tend to beat ourselves up and be really self-critical
whenever we don't have the energy we think that we should
or we aren't able to engage in the same things
that we used to.
I currently have a disability,
so my desmoid is in my leg
and I am unable to walk very easily.
It's pretty challenging.
And so I'm about to,
or I just came back from a trip where I was flying by myself
and they had to walk through the airport.
And man, I caught myself being so critical,
like this used to be so easy for you before, Ashley,
you could do this so easily.
Now this has become so hard, this is so taxing for you.
And really having to make that active choice
to shift our mindset to be compassionate towards ourselves.
Self-compassion is characterized by three different things.
And the first one is self-kindness.
Self-kindness can be kind of hard.
And so I always encourage people to talk to yourself
the way that she would talk to one of your closest friends.
The way that we talk to ourselves,
we would probably never talk to one of our close friends
that way.
And so trying to reframe our perspective a little bit
and view ourselves as a close friend
and talk to ourselves that way.
The second thing is called shared humanity.
And that's essentially like, we're all human.
We all make mistakes.
We all have good days.
We all have bad days and that goes for me,
that goes for you.
And so giving myself the permission
to be a part of humanity and to share that with all of you
and to not beat myself up for those days
that are a little bit more challenging
or I make mistakes or have a failure of some sort,
really understanding that that's part of being human.
And the third thing is mindfulness.
And mindfulness is essentially how do I observe my thoughts
in a way that's not judgmental?
How do I just allow the feelings and the thoughts
that come up to be present,
but not judge them or criticize myself for having them?
The second thing is self permission.
Now, self permission is also a big deal
because whenever it comes to emotions,
many of us have learned in our family or in our culture
that certain emotions are not okay.
And that if you feel a certain way,
you should probably quiet that emotion
and make sure that nobody else sees it
because we don't wanna be a burden.
We don't want anybody to see like our cards.
We don't want anybody to see us sad.
And so we learned to kind of quiet those things
and we learned that certain emotions are uncomfortable
and we label them as being bad.
And so we try to make sure that there's no space
for those emotions to exist within us.
And so self-permission is really,
I'm gonna give myself permission
to feel the emotions that are coming up
because you know what, having a desmoid is hard.
And so I'm gonna allow myself to just sit
with the grief of it, sit with the sadness,
sit with the anxiety or sit with any of the other emotions
that come up and I'm gonna give them space to exist
without trying to quiet them or push them aside.
The third thing is self curiosity.
And I love this quote.
It says, "Once you start approaching your body
with curiosity rather than fear, everything shifts."
And I put this in the emotional self-care section
because I'm really talking about it
from the perspective of emotions.
Whenever we experience emotion and I'll be,
I'm a prime offender.
There are many times,
especially when it comes to my medical journey,
when I beat myself up because I tell myself,
you should be stronger, you should be able to handle that.
This shouldn't affect you.
This has happened before.
Why are you crying?
Like you know what's happening right now.
And so rather than beating myself up
for having those emotions come up,
let me take a stance of curiosity.
Let me look at the emotions and ask myself,
why are these here?
Let me notice the course that it decides to run
and let me again allow space for it
versus trying to criticize it out of me
or trying to kind of shut it out of me.
Self trust is also very important
and can be very hard for us.
because self trust goes hand in hand with that thought of like, how can I trust my body if my body's betrayed me and so this can be a really challenging thing to like it, it makes sense it's like a short term but it's a really challenging thing to embody.
But it's important for us to know that research tells us that psychological distress was most
likely to be found in those who blamed themselves in some way.
And so the opposite of trusting ourselves is essentially blaming ourselves, blaming
ourselves for our situation, blaming ourselves for our diagnosis.
So how do I trust and get to a place where I can trust myself, trust the decisions that
I'm making, trust the direction that I'm going?
The final two things, positivity,
I'm gonna go into a little bit more later,
but positivity is a really, really powerful tool
for emotional self-care.
But positivity is one of those words
that people kind of cringe at nowadays
because there is the reality of toxic positivity
that comes up.
And the difference between positivity and toxic positivity,
toxic positivity is whenever you are not allowed
to experience the negative or the challenging
or the difficult emotions that go along with this journey.
We all have probably been told things before like,
well, at least you have the good kind of tumor
or at least you're not on real chemo
or at least like it's not malignant.
Like we've all heard these different things before
where it's essentially a response to our pain that says,
you know what, you're not allowed to feel
the hard stuff, just be positive,
be grateful for all the things that you do have
and all of the good things that this does bring.
Positivity is a really powerful tool.
So I don't want positivity to get lost
in all of the talk about toxic positivity these days,
but positivity and really trying to have a positive outlook
on our situation, on our lives, gratitude,
these are all really, really powerful things.
As long as we know that it's just as important
to experience and feel the difficult things.
The final thing with emotional is this idea of paradox.
We live in a society that tells us
we need to pick one emotion over the other.
We need to either be happy or sad.
But the reality is in most situations in life,
we experience more than one emotion at the same time.
And so really giving ourselves the permission again,
to not necessarily choose between all of the variety
of emotions that we're feeling, but allowing just kind of the
breadth of what we're feeling to exist. Okay, so spiritual
self care is going to look different for everybody. And some
of these things may tie into if you practice a certain faith,
some of these things will also tie into if you don't practice a
certain faith. And so the first thing is about cultivating hope.
And hope is, it's the key to self care. I mean, it's the key
to resilience, it's the key to recovery.
And hope sometimes can be a really difficult thing to find.
And so cultivating and finding hope is a necessity
and cultivating hope is a choice.
And so it's something that is active
and that we have to actively do.
Now, when we're talking about cultivating hope,
there's three different actions that need to take place.
The first one is do we have the ability
to set a goal for ourselves, an objective,
something we want to work towards,
and figuring out how we work towards that goal
with the ability to be flexible.
And so the research calls it a pathway.
That pathway is how do I get towards my goal?
And the third thing is agency,
which is essentially I believe in myself enough
to be able to move towards that goal.
So can I see something for myself in the future?
How do I move forward towards it?
Or how can I figure out how to move towards it
and the belief in myself that I can do that?
The second thing is gratitude.
Gratitude is really significant too,
but I have to say gratitude can sometimes take a place
that's shame-based where we tell ourselves,
don't feel your negative emotions
or don't feel the hard things
because look at all of the things that you do have.
Gratitude doesn't work if it's rooted in shame
in shaming ourselves.
And so when we're talking about gratitude,
we need to look at it from the perspective of grateful
for who we have, grateful for the circumstances in our life,
but not as a way to criticize ourselves
for having challenges or for struggling.
Mindfulness meditation, again, is what we talked about
in the last slide of like, how do we observe our lives
and our thoughts and our feelings
from the place of non-judgment.
For those who do have spiritual or religious practices,
mindfulness meditation might look like
spending time in meditating on a certain scripture.
For others, it might look like focusing and meditating
and bringing your attention to your breath,
like we talked about before.
And the final one here is forgiveness.
We could talk about forgiveness all night,
And so I'm just touching on it briefly,
but forgiveness is not only forgiveness for others,
but forgiveness towards yourself
or forgiveness towards your body
for the things that have taken place.
And again, forgiveness is a choice.
All of these things in here are action-based.
They're all choices that we can make.
With taking care of ourselves socially,
I think these are some of the most important pieces
to keep in mind.
When we're looking for a support system,
especially if we've experienced something traumatic
or something challenging, the research
tells us that the most important factors are a support
system that promotes quietude, where you can have quiet,
a sense of safety.
I feel safe among these people to be myself,
to express myself, to talk about the reality of my situation,
and a feeling of being protected that these people would step in and protect me if needed.
Again, we just talked a little bit about toxic positivity. And I've got to say with all of the
clients that I meet with, toxic positivity comes up regularly because we live in a society that
does not know how to handle grief and does not know how to handle pain. We live in a positivity
society and so anything that is hard or sad or challenging we immediately try to run away from.
And so many people receive comments like,
"At least it's not the bad kind, right? At least it's not that hard. At least you didn't lose your
hair." All of these kinds of comments that really minimize our experience and can be really hurtful
because they're telling us to just be positive or just be grateful. The toxic positivity piece
is really rooted in our culture. It's rooted in a culture that really promotes that you should be
happy all the time and that's kind of a, it's a myth, like that's just not reality. And so it's
really important whenever we're connecting with people and whenever we're developing a support
system to understand that toxic positivity exists, but that people generally don't mean
it negatively and generally aren't trying to minimize and dismiss our situations.
For us to have grace, and I know that's hard sometimes, it's been hard in some of my situations
too, but to have grace in regards to this need to always be positive and to maybe take
a stance of educating people on what it's like to experience challenges or what it's
like to have a Desmoid tumor.
Because sometimes those people who engage in toxic positivity or make toxicly positive
comments can be very supportive.
They just don't know what to say.
So it's really us assuming the best or mending relationships with people who have communicated
to us in a way that is toxic positivity.
In our world, it's very important for us to connect with other people, both other Desmoid
patients but also people outside of the Desmoid community.
It's important for us not to root our whole identity and our diagnosis and to have those
friendships and relationships outside of the Desmoid community.
But man, I got to be honest with you, having people inside of the Desmoid community is
a game changer.
I had an MRI today and I've sent text messages to like four or five of my Desmoid friends
because they get it.
They know what today looks like for me.
And so receiving encouragement from them today has been very different than receiving encouragement
from people who haven't been through it before.
Finally boundaries is very important.
And again, we could talk about this all night long.
I'm just going to give a short little story.
A couple of months ago, I was starting to spend some time
with a new friend and she is very kind, very interested,
very invested, asks a lot of questions,
wants to know what my experience is like.
She invited me out to an event
and as soon as we get to that event, she says,
"Ashley, hang on a second, I'll be right back."
About 15 minutes later, she comes back with event security
and they say that they've changed our seating arrangements
because they just learned that I have cancer.
And so this new friend went and told the event staff
that I had cancer and asked for closer seats
and more accommodations.
Well, at first I felt very frustrated by this
because I don't like people to use my situation
in order to benefit or to gain from it.
And I was about ready to say, you know what?
I'm not gonna spend time with this person anymore.
they just don't get it.
But instead, I decided, let me set a boundary
because if I'm clear about what I'm OK with,
that's actually kind.
If I'm unclear, that's unkind.
And so if I just don't say anything and I disengage,
that's unkind.
And so let me at least try to set a boundary.
This friend was very apologetic, completely understood,
and has become one of my biggest supporters
during this round of treatment and has
been very invested and very engaged.
And so setting boundaries really has the potential
of preserving our social relationships
versus when we think about boundaries,
we tend to think about like constructing walls
to keep people out.
But in reality, we're really trying
to preserve our relationships.
These next two slides I'm gonna go through really quickly
because for the sake of time,
I wanna make sure we have time for questions.
But in regards to intellectual self-care,
these four things are very important.
And the way that they show up in your life
is gonna be different for every single person.
So how can we put ourselves in situations
where we can learn something?
How can we put ourselves in situations
where we can solve problems, where we can be challenged?
Now, this can happen in different areas of our life.
This can happen at home.
This can happen at work.
This can happen by putting together a puzzle
or playing a board game.
But how do we incorporate learning,
solving problems and being challenged into our lives?
The final thing on here is monitoring our self-talk.
We've talked about the self-criticism before.
And so from an intellectual point of view,
it's important for us to investigate our thoughts,
to be aware of our thoughts that come up
so that we can monitor the negative self-talk
and flip it and reframe it to be more compassionate,
more kind to ourselves
and really engage in that shared humanity.
The final thing about self-care is sensory self-care.
This one I think is very, very important.
And so how do I take care of all of my different senses?
My sense of taste, what does that mean?
What do I enjoy?
What food do I enjoy?
What beverages do I enjoy?
And how can I incorporate that into my life
in a way where I'm being intentional about enjoying them
rather than indulging in them?
My sense of smell might be things like aromatherapy.
I like having essential oils going on throughout my house.
My hearing, that might be what music do I like?
Do I like having music on whenever I'm home,
whenever I'm driving, let me create a playlist
or do something that gets me exposed to music
because music really helps calm my nervous system
or improve my mood.
Tactile, things that I like to touch
or things that I like to see.
And whenever I see things,
that might be like my environment,
what's aesthetically pleasing to me,
what do I like to look at?
What colors do I like?
Having those types of things in my environment.
Finally, all of these things in regards to self-care,
they're all a commitment.
And so I've said it throughout tonight,
self-care is a choice, self-care is action.
And so incorporating a lot of these things into your life,
it's a decision that you're making
to intentionally incorporate them into your life,
but the key is incorporating them without shame.
Because often we're so used to putting things
on our task list of like, I've got to do this today
and this today and this today.
And self-care becomes just another task.
And if I don't do it,
then I'm going to beat myself up for not doing it.
and then it becomes just another way of shaming myself.
And so we have to be really careful to commit to self-care
but not using shame as our motivator
for making sure that we intentionally
incorporate it into our lives.
So I hope that you all have something
that looks a little bit like this.
It might look a little bit different,
but in your self-care plan,
there's a couple of different things
that you've been able to identify
and been able to record in order to begin to actively work
on incorporating some of these different self-care strategies
into your life.
Now, these resources, I'm just gonna leave this up
for a second because a lot of these books were used
to create this training specifically.
I recommend all of them.
I wish I only had a couple that were like the best,
but I recommend all of them,
especially whenever it comes to having different strategies
to take care of yourself.
This book, "The Wisdom of Your Body"
might be my top recommendation
because it actually gives a lot of tools
and a lot of strategies for how do I get back in touch
with my body whenever that disconnection has happened
because of trauma, because of pain, because of discomfort,
because of emotions, I don't wanna feel all of those things.
So I ran through the last two really fast,
but I really want to open it up for questions.
And so Lynn shared that in the little Q and A box,
you can ask some questions and over in a couple of minutes,
hopefully I'll be able to answer some of them for you guys.
- That's great.
Thank you so much, Ashley.
This was wonderful.
I feel like every time you do another webinar,
it becomes my new favorite.
I just, I feel like anybody could relate to this
and I thought it was great that it's pointed
towards the Desmoid tumor patient community.
So we do have a couple questions,
but I'm actually gonna kick mine off first.
So someone once told me that watching TV is not rest,
is not self-care.
And I like, it kind of makes sense to me,
but I really don't get it.
And I was wondering if you could pull that apart
a little bit.
- Yeah, I'm glad that you asked that
because self-care is really all about intention
and the intention behind it.
And so is watching TV self-care?
It could be, but if we're looking at it
in regards to moderation versus something that's excessive,
we, in regards to self-care,
it would be looking at watching TV in moderation.
Now there are gonna be certain things like the blue light
is going to increase your cortisol levels.
And so if you're watching TV right before bed
and it impacts your sleep,
maybe it's not the best self-care exercise.
If you're watching TV to kind of numb yourself
and escape from the emotions
and the things that you're experiencing in your life,
maybe that's not considered self-care.
But if you're like really into a TV series right now
and you're like just waiting for the next one
and you have to know what happens
and this TV show brings you joy
and you're able to watch it for the enjoyment of the content
versus watching it to escape from your outside life,
then that would be considered self-care.
Because this is something that's actually energizing me.
It's actually filling me up.
It might even be giving me content
to go and talk to my closest friends and engage socially
in a way where we all can talk about the TV series.
And so intention is really the most important thing.
We can't say for anything blanket,
this is a self-care practice,
because yeah, our intentions differ.
And so if our intention is to escape
from what's going on inside of our bodies,
to escape from the outside world,
then it would not be self-care.
Does that clarify?
- It does, it does make sense.
It definitely clears things up for me, thank you.
So I know you said we were gonna talk
about six areas of self-care.
Do you have any others that you could name?
Yeah, so there's a lot of others,
and you can add this to your self-care list
and your self-care plan.
We talked about some of the most common
or ones that we all experience in our life,
but we might be looking at medical self-care,
especially in our community.
And so what does medical self-care look like?
That might look like taking your medication
or going to your doctor's offices
or getting your scans on time
or actually following your treatment plan.
And so medical self-care is gonna be one
that's very important for our community.
So I would encourage that being added to the list.
There's professional self-care.
How do we take care of ourselves at our job?
Our work relationships are different than our friendships,
but some of them might overlap
and the way that we interact might be the same.
And so there might need to be certain boundaries
set at work with other people,
but also with ourselves and how we engage in work
and how much we push ourselves.
There's financial self-care.
How do we take care of our finances?
How do we spend our money?
Environmental, what does our environment look like?
Recreational, how are we spending our time?
What are the fun things that we're engaging in?
Self-care in regards to our tasks and our responsibilities
that we have to fulfill every day.
And so there's a lot of different realms of self-care
and we can look at them all individually.
There are some things that are gonna cross over,
but I would say those are some of the additional ones.
Medical is really important for our community.
- Okay, great.
And lastly, how do you forgive your body?
- Yeah, that's a loaded question, it's a big one.
And in reality for those in our community with Desmoids,
those that I've spoken to with cancer,
chronic illness, rare disease,
that piece of feeling betrayed by our body is a big one.
And so how do we not even necessarily forgive ourselves,
but forgive our body for the things
that we have experienced or that feeling of betrayal?
Again, we could talk about it all night,
but I think one of the most important pieces
when it comes to forgiveness is developing empathy.
And when we talk about forgiveness
and extending forgiveness towards somebody else,
one of the key components is developing empathy
for the person who has hurt us.
And so if that person is our body,
how do we develop empathy for our body
in the way that it's actually trying to protect us
or maybe even trying to heal us
from the things that we're experiencing, you know?
And so the education that we're doing
is very, very important whenever we're talking
about this concept of forgiving our body.
Because over the last couple of sessions,
we've learned things like, you know what?
Your body actually maybe isn't fighting against you.
Maybe all of these things you're experiencing
and the reactions and the triggers and the anxiety
and some of these uncomfortable things
are actually our body's way of trying to protect us
and trying to alert us to threats
and trying to make sure that we're safe
and we're well taken care of.
And so if I can develop this sense of empathy
towards my body and all of the things that it's trying to do
and how hard it is working to actually take care of me
and protect me and make sure my survival,
then I can have a different perspective
on how I relate to my body.
And rather than seeing it as betraying me,
is there something else that is coming into play
that's affecting both of us because I am my body,
I'm not separate from it.
And so big, big question,
we could talk about it for a very long time,
but I would say that the first thing is
how do I really get to understand the fact
that my body is working to protect me
in developing empathy for all of the things
that it's trying to do versus looking at it
from the perspective of how it's fighting against me.
Yeah.
I really love that. Thank you. So I think that's all the questions that we have for now. Do you have anything else that you want to add before we close.
I don't. I just know I'm very thankful for the opportunity to do these and to speak to the Des Moines community. And with this one in particular, I think it's just such a pertinent topic to all of us because self care is really a proactive decision.
And as we continue on this journey, and again,
just how important it is to give ourselves
the permission to practice self-care,
knowing that it's not selfish,
knowing that it's not indulgent,
knowing that it's not only for our benefit,
but it's for our benefit so that we can go out
and continue to actively engage in the world
and in our relationships.
And so hopefully some of this information was different
what you've heard typically with self-care. If you do like the spa, great, continue to do that,
but hopefully there are some additional strategies to help in being proactive about caring for
ourselves. Okay, well said. Well said. Thank you so much Ashley for addressing the topic of self-care
today. I'm sure that like you mentioned, I'm sure that everyone can relate. So we also thank the
the Desmoid Tumor Patient and Care Partner communities
for joining us.
Please note that we will be sharing a recording
of this webinar after it's edited
in probably roughly like two weeks.
All dealing with Desmoid's content can be found
at dtrf.org/dealingwithdesmoids, that's all one word,
dealing with Desmoids.
go to dtrf.org to subscribe to our mailing list
so that you'll receive the notification
of when the recording is available.
Also stay tuned, we will be hosting another dealing
with Desmoids webinar coming up in September,
actually this is gonna be a special one.
And also make sure to join us for DTRFs together we will
virtual weekend from September 23rd to the 25th
and you can learn more at our website, dtrf.org.
I think that's it.
Ashley, thank you so much again.
We hope that everyone has a wonderful night or morning
wherever you are.
Thank you.
(gentle music)
[Music]