The Icefall Doctors
I selected “Earth’s Natural Wonders by BBC” amongst a list of Netflix series, and began munching on my dinner alone. The first chapter shone a light on the Icefall Doctors, whose job is to secure the safest route up Mount Everest for other climbers. Call me ignorant for not knowing about them earlier; I was only aware of the sherpa porters. But I was appalled by how these men’s lives are literally used to pave the way, before the ‘heroes’ and ‘conquerors’ even get on the trail. (P.s. ‘conquer’ is such a poor word choice for climbing, but I digress).
How many lives were sacrificed along the way just so people could meet their personal goals, and go on to become famous or celebrated worldwide? Sure, it’s an admirable achievement, but is it ever worth another man’s life? This made me think about the many times I’ve pressed on in order to preserve that fragile thing called ego, and its cost. The intention behind such actions isn’t anything to be proud of, and does have an impact on those around us as well.
Facebook Status: “Hi, I’m in Hospital…Again”
I tend to only update my personal Facebook status when I get admitted to the hospital, and did so again recently. If you knew me a few years ago, you’d know that I was the sort of person who rarely posted about my private life online because, who cares?
Yet now I share about my life with chronic illness at liberty, because I’ve come to realise that there are many good reasons to do so as well. I may begin with the thought, “what if people find it annoying, or think I’m being weak, or stupid?”, and feel embarrassed before I even do anything.
Then my thoughts would wander off to those who are going through similar situations, yet are unable to speak up for whatever reason. This gives me that push I need to post; I am simultaneously voicing out the suppressed concerns or struggles of many others out there, whether I know them personally or not. One of them may be that old lady who was screaming and begging to die in my ward. Another would be that teenage girl who emailed me for support, as not even her mother could understand her pain. So I put my useless pride aside, and post that goddamn status flaunting my vulnerability in all its gross glory. I try not to go overboard though, as too much of anything is never good and gets stale, thus losing its impact.
I am Not Indispensable
Just the other day I had to deal with a bitter poster on Twitter. While I’d usually block such people, I hesitate when it’s another person who lives with chronic pain. I think to myself, “I should tolerate and accommodate them more than the average person because they’re in pain, right?”. Or, “What if I’m blocking them from an important resource on my feed?”.
Read: How to deal with hurtful comments online
And then I realise that it’s my ego at play again, but on a sneakier level. I am only one of many who are sharing information and raising awareness on chronic illnesses. And guess what, there are tons of good resources available. In fact, they’re where I get my information from to begin with! Hospitals, research papers, and other bloggers – I am not indispensable.
The Need to Protect My Peace
The most important realisation was, however, the need to protect my own energy as well. Sick people are still human, and we all have different perspectives. While I try to be as open-minded as I can, I will not agree with every single person, and that’s okay. The world would be a very dull place if we all thought and behaved in the same manner.
When such people infringe on my peace and drain me of my already limited energy supply, then I need to cut them off, no matter who they are. This is necessary if I want to be able to continue doing what I do without burning out, and to retain a measure of joy from it. It’s more important to focus my energy on those who find my content useful, who nourish me in return, and who show mutual respect, kindness, understanding of differences, and support. Isn’t that what community is all about, after all?
At the end of the day, I’m just not that important. Wait, I need to rephrase that. I am important, but my ego is not that big a deal, and often trips me up. If we want to be of real use, then we need to put our petty prides aside, and celebrate both our individual and collective humanity instead.
Don’t be Ashamed to Chat About Chronic Illness Casually
Finally, the best thing you can do to raise awareness on an everyday basis both on and offline, is to chat with others as if chronic illnesses are normal (because they are for us!). Instead of fretting about how others will perceive me or take advantage of my weaknesses, I worry instead about how little is understood about chronic illnesses, and the stigma it holds within society.
In that sense, any ridicule directed my way doesn’t really matter anymore, because I took the brunt of that shame or embarrassment for millions of others. Those who listen and want to learn more, or who didn’t even realise such problems existed, will now be wiser and become our allies instead.
With humility, all judgment, negativity and worries recede into the background, so that I can become more useful. You can choose to view it another way, but I like looking at myself as a ‘tool’. Use me. Sharpen me. Harden me. Let me be the arrow that pierces into the heart of humanity. Humility releases me from the grips of fear to give me strength and focus. Humility toughens my protective shell, so that I can stand in the frontlines, and dare to make a positive difference in this world.
Read More: You Don’t Have to be Strong, You Just Have to be a Little Stronger Than Before
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For More Insight:
- 17 Things to Consider If You’re Debating Whether to Post About Your Illness on Facebook (themighty.com): http://bit.ly/2sZyNlz
- A New Idea of Self-Care (runningonbalance.com): http://bit.ly/2W0Eaih
That ego – while it can be useful, it can more often be detrimental! Thank you for your timely reminder on balance and self-care! It’s important not to ‘take one for the team’ especially when the team neither expects that of you nor understands that that’s what you’re doing!
I feel fortunate not to have dealt with nastiness from folks on my social media yet(just some lovely compliments, the occasional crickets and sometimes spam), but you’re absolutely right. We aren’t the only resources available, not even close – and if somebody isn’t appreciating what you’re offering you don’t need to take any abuse from them. We’re trying to find and grow our tribes – and if somebody isn’t in a place to appreciate that, it’s their loss, not ours.
This is a great post Sheryl. I tend to keep m conditions and my ‘other’ life (when of course they cannot by separated) distinct, such that I rarely discuss them with friends other than a few trusted ones. But as you say, it’s making it ‘normal’ that is most important and will stop (hopefully) all the stigma.
This idea that showing our humanity is important is the crux I believe of human connection. Brene Brown’s theory of the impact and importance of vulnerability. Through being vulnerable, we actually show our courage and strength, allowing others to show their humanity.
Yes exactly, Katie! It allows us to be human, and encourages others to embrace their humanity, too. As advocates trying to raise awareness about chronic illness and pain, our egos are not big helps and get in the way I think. Humility can be a useful tool in this case 😀
The way I see it, if others can post endless photos and posts of their children, vacations, their awesome spa day, and other activities, nobody should be criticizing us for sharing our life of chronic pain; after all, that IS our life, just as children and vacations are the lives of others. It’s our life, our outlet, and while it can be difficult to advocate for ourselves, we shouldn’t be afraid to post what’s going on in our lives, good or bad 🙂
Agreed! It’s your life, your feed, your curation 🙂
Great, thought-provoking post, Sheryl. I’ve also been shy about speaking out about my illness. Being on social media has helped me to open up much more, but I still often get nervous before I publish my tweets/posts! Usually it’s the ones I feel most nervous about that I get the most response too! That probably tells me something ?! I’m still working up to being more open in sharing my stuff with family and friends – your post has made me think! Time to shove that ego out of the way perhaps!! Sorry you had to deal with some negative comments. I’ve had to block a few people too. As upsetting as it is at the time, it’s just not worth ruining my inner peace! Thank you for your work. I always look forward to your posts, and they always make me think. I like that! xx
Hi Emma, thanks for reading and sharing your thoughts! Yes it can be nerve-wrecking, after all, it’s subjecting ourselves to the comments of the billions of internet users out there ;P I’m actually surprised you’ve had to block a few people too, seeing that your accounts are so full of gratitude – nothing to turn people off by! Thank you for your kind comments, your support, likewise, is deeply appreciated. Sending lots of spoons and love xxx
Great post Sheryl! I NEVER write about my illness (MS) on my private Facebook page, I keep it all to my blog page on Facebook. I just worry that I am going to bore people I guess, who may not be interested in my illness and the impact that it has on me. BUT, in a way I am not helping them to understand about MS and the affect it can have. They only see those times that I can manage to get out and about and not my real life. I guess that is the same for everyone on Facebook, but you really made me think, thank you. xx
Thank you for reading and sharing your thoughts, Jenny! Yes I think many of us are shy/embarrassed and worry about over-sharing. I do think there still needs to be some kind of balance (I mean, *any* topic gets boring if overdone!), but I also think I can personally speak up a bit more. I have gotten to a point where I’m comfortable advocating for myself and just casually chatting about being chronically ill with strangers wherever! xx