Beyond Brave

“You’re so brave.”  

How many times have you been told that you are “brave?” When that happens, how does it make you feel? Are you flattered or frustrated? 

I have been pondering this for a while, and when I recently posted this question online, I was thankful for the many people who took the time to respond.  This blog will be a collection of those responses, as well as my personal opinion on how being labeled “brave” can stir different emotions for those of us living with chronic illness.  

The Oxford dictionary defines ‘brave’ as: “Ready to face and endure danger or pain, with no fear.”

According to this definition, bravery or being brave is a choice one makes. 

Interesting, I’m not sure about you, but I don’t remember making or even having a choice in the matter.  I don’t recall signing a waiver of consent as a 11-year-old child to have my life be flipped upside down, to be pulled out of school, hospitalized numerous times, and separated from family and friends, as I was given every harsh medication available to try and stop the avalanche of intense lupus symptoms.  In fact, as a pSLE (pediatric lupus) patient, I had little to no control or choice in which doctors I would see, treatments I preferred, etc.  I was not, as the definition suggests, “ready to face and endure danger or pain” I was a child being told what I needed to do to stay alive.  

Was I “without fear?” No.  I was scared. Did I have a say in any of it? Not really.  As Jean from our Facebook page says, “You do what you have to do.” Martha Chastney Smith, a chronic illness advocate also stated it perfectly, “Oh my god the brave thing is so annoying! Like, I literally have no choice in the matter. When people act like you’re doing something courageous just by living, I want to ask them, ‘What else do they expect me to do?’”

It’s as if somehow this illness (that you didn’t cause), these circumstances (that you didn’t ask for), and this curveball that you have been thrown (that you didn’t see coming), instantly converts the way the world sees you after diagnosis/symptom onset. 

Something that you didn’t consent to disrupt your life, has now thrust upon you a new label, that you didn't cause, didn't ask for, and didn't see coming... "brave."

Unfortunately, most individuals are parachuted down from the turbulent skies of confusion and exhaustion after a lupus diagnosis and sent straight onto the battlefield of bravery.  It is there that often well-intended support people are hyping the patient up with fight songs, echoing mantras that include: “You’re so strong!  You are courageous!  You are a warrior and a survivor!  You are brave!”  As our MTL friend @WIllowBree perfectly retorted in our survey, “I’m not brave for taking my medication, I am not brave for sticking to it, I am not brave for waking up each morning. I am a human being who simply struggles due to health conditions, just like anyone else.  It’s not bravery, it is survival.” 

Another blogger reiterates her sentiments, “In some situations, there is no bravery involved.  No one chooses to go through these things…these things happen with little personal control involved more often than not.  I am not brave for going through something I didn’t get a choice about.  But I am strong for being able to come out the other side. I am compassionate towards those who have been through these terrible things. I am powerful for being able to talk about these things and help others with what they are dealing with, while coping myself.  But one thing I am not is brave.  Not for this anyway.” 

Haddie Gladwell hits the nail on the head in her comments, when she says “It feels like the term ‘brave’ is used by people who feel uncomfortable talking about an illness and just don’t know what else to say. They want to respond positively – and so their first instinct is to acknowledge you fighting through something. That’s understandable, but it can come across as patronizing.” 

Teresa Jansen, a licensed therapist, unpacked this more for us.  As she stated, “It is easy to attribute “bravery” or heroism to someone when we struggle to manage our own empathy or accountability.  In other words, I see someone struggling with a chronic condition and say “you’re so brave” to alleviate my own discomfort.  If that person is “brave” or a saint or hero, then I don’t need to sit with the discomfort of doing my own work or empathizing too deeply.” She closes with this, “Most folks didn’t choose to be “brave” and saying that indicates a person trying to grasp at some moral high ground or at best a degree of control.”

Yes, and amen.

Circling back to the definition, let's spend a moment on the latter part: “Ready to face and endure danger or pain, with no fear.” 

No fear. 

Hmmmm…..I call rubbish. We are not part-superheroes, we are full-humans, and our bodies are made with ALL the emotions necessary to navigate survival in this life, INCLUDING the emotion of fear.  Fear is a core emotion, in fact, it is one of the 6 basic emotions (in addition to happiness, sadness, disgust, surprise, and anger) that psychologist Paul Eckman identified back in the 1970’s that were universally experienced by all human cultures.  It is a powerful emotion that plays an important role in survival.  It is the emotional reaction to an immediate threat that produces your fight or flight response, without it, we would not have survived as a species.  

'No fear' does not keep you safe.  You cannot be “brave” if you are killed by the bear.  Fear helps you stay alive.  

So, let’s settle this once and for all. You and I are not “less brave” when we are afraid, depressed, anxiety-stricken, and angry.   Moreover, we are not “braver” when we deny our feelings. Bravery isn’t who we are, it is what we do, when we accept that we are all humans, doing human things, to the best of our ability, without comparison, labeling, shaming or fanfare…for just being human.

“I don’t want to be brave.  I just want to be human. I am drained, swollen, and stiff. I am not sure I have it in me to be strong too. I know it is well-meaning, but the more that people insist I am brave, the more they cast me as a superhuman who is not in need of support and tender care.  …I am a fighter but what if I don’t have to be?” -Amy Kenny

Parts of Me WIN and Parts of Me LOSE?

The “warrior/brave/battle" language is very common when living through and (for some) overcoming illness or trauma. To this day, the weight of that word “brave” still sits heavily on my chest, because even all these years (33 years to be exact), it comes with it a hefty sword, a hefty breastplate, and a hefty responsibility.  Unfortunately, this ‘militaristic imagery’ is so steeped in our every-day jargon that many people do not even know what they are saying WHEN they say it.  I try to show grace when it is said to me, presumably from a nice place (PS, notice I said nice and not kind- that's a different story and a blog for a different time). 

However, have you ever stopped to think that when you call yourself (or someone else calls you) a “warrior” you are likening yourself to a soldier going off to battle?  Though this time, the enemy you are fighting is your own body. Which, decided to betray you, like Benedict Arnold (rude).  Yes, ‘fighting the fight’ in some ways, means fighting against yourself.   I could write an entire manifesto on this, but this is a brief blog that has already become long-winded, so I will refrain from going into the inner-child/IFS/many-parts rabbit hole.  

To keep it simple, I will say this.  It can mean for some, that there are parts of you that are uncomfortable to talk about and therefore are displeasing and need to be dismissed, denied, or even demolished.  Hypothetically speaking, if I am a brave warrior/ survivor/fighter, then I need to come out on top, correct? If I (the best part of me) am a winner, then my lupus (the “worst” part of me) is the loser.  Moreover, when people see me showing up, giving my best, trying to be a part of “the land of the living” and label me brave, does that mean I am not brave on the days that I cannot leave my bed?

Jenny from trippingthroughtreacle.com states it this way, “‘Some days I feel rubbish. I am a grump and sometimes cry… Does this mean that I’m not brave at times like these? That I am a coward?  On the contrary, I think they are my bravest times.  They are the times that I am brave enough to admit that I can’t always handle…that I can feel frustrated and sad.  And you know what? I find that from these times often comes a renewed sense of purpose to keep going and to have strength.  Strength to show my kids – and myself – that I am going to be ok, that I am going to keep doing everything I need to be as well as I can be…  Sometimes, being brave isn’t about being overtly brave – it is in the silent way that we keep going, day to day, not always putting on a ‘brave face’, but knowing that we are doing the best we can.” - Jenny

There we go.  Now we are talking.  It is not about denying parts of yourself, but embracing all the messy, complicated highs and lows of being human and doing the work.  Sitting in the still, small moments that say, “I am alive, and I am doing the best I can in this minute,” As Kate Bolwer says beautifully, “In your fear. In your shaky hope. Brave looks like that too sometimes.  You who live still. Brave and scared at the same time.”

The Brave Label: Is It Identification or Separation? 

“Brave. Strong. Courageous. Fighter. Survivor.  All words used to describe me that afternoon.  The identity envelopes me the more that people insist it is true. Like the red allergy bracelet around my wrist screaming “codeine” to the distracted doctors. They might as well give me a bracelet that brands me “brave”!  -Amy Kenny

I wanted to make clear that there is nothing intrinsically wrong with the word “brave” or being called “brave” for that matter.  I mean, I tell my child he is brave often.  Like when he tries something challenging…from finishing strong in Taekwondo after a long day of belt testing or going on an adrenaline-inducing ride at an amusement park with his slight fear of heights.  Most importantly, when he goes against the status quo, dares to be different, and lets his own individuality shine, while standing up for others to be seen and shine as well.  

I agree with this blogger's words when they state, “Bravery is not some mystical external force that graces us with the confidence and courage we need to triumph over our fears. Bravery is a choice we make and an action we take.” However, as Sarah S, from ‘The Mighty’ states, “The problem with telling people they are brave is that it propagates the myth that the world is divided into the strong and the weak, the brave and the cowardly. I tend to think that equating sick or disabled with brave is a subtle way of quarantining ill people. If “they” are not like “us” healthy types, then there’s no way it can happen to us too.” 

Oh, the labels!  They come on quickly when navigating the peaks and valleys of a chronic illness, don’t they?  What is fascinating is how quickly you can become brave when it helps others to feel more comfortable processing your illness. 

“The hardest part isn’t the pain, it’s the people. …Some days, I would still like to go out into the world without my fireproof armor…I would like to live in a world where my bravery is not the price of admission.  I would like to be a full human and not just a metaphor.” - Amy Kenny, My Body is Not A Prayer Request

Going Beyond Brave

This is how being called the word “brave” has made me feel. However, with time and a lot of self-reflection, I have learned to honor all dimensions of who I am and lean towards acceptance and care for ALL my parts of my multiple self, including my lupus. I have learned to work WITH my body, not against it, I have learned how to partner with my parts, have an attune attachment, and loving compassion to connect with and not conquer my illness.  I have also learned that I am not responsible for, nor can I manage, people’s reaction, feeling, or words directed to me about my illness.   

To all reading this, I hope you can take a moment today to remind yourself that you are enough. Lay down your sword. Take off the superhero cape.  Let yourself be human.

Thank you to all who responded and shared their feelings with me as I assembled this blog.  You. are. My. people.   I wanted to close with this quote from Sarah, S, from The Mighty…

“For there but for the grace of a friend — a friend that dared to go beyond brave with me — go I.” 

Written By:

Kelli (Casas) Roseta

**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness.   All intellectual property and content on this site and in this blog is owned by morethanlupus.com.  This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2024.

Sources:

Going Beyond 'You're So Brave' When We Talk About Chronic Illness (themighty.com)

'Bravery' in Chronic Illness - (trippingthroughtreacle.com)

11 Ways to Love Yourself and Your Illness Even When You Don't Feel Like It (themighty.com)

Being Brave Actually Kind Of Sucks | Sarah Rhea Werner (sarahwerner.com)

My Body is Not A Prayer Request, Amy Kenny, BrazosPress CopyRight 2022.

amazon.com/Body-Not-Prayer-Request-Disability/dp/1587435454

September 2024