Hey there! If you stopped to read this, wow, you're awesome! And since you're that awesome, maybe you'd be willing to check out this super sweet, not-so-top-secret campaign to take Films For Action to the next level of awesome in our quest to change the world. All the details here. Cheers!
What Chronic Illness Looks Like Behind Closed Doors
By Amani Omejer / huffingtonpost.co.uk
Feb 16, 2017

 

Living with chronic illness is lonely as fuck. I spend so much time on my own — more time than I ever expected to spend on my own, or have ever wanted to. There is so, so, much of my life that people don’t see. I share parts of it — through social media, my writing and cartoons, and in person with friends — but there is a tonne of stuff that I don’t share, but yearn to everyday. 

I don’t share all of what’s happening partly because of shame and embarrassment and a sense of deep, deep, failure and self-blame that my life looks the way it does and I feel the way I feel, and a fear of what people will think or a fear of saying things exactly as they are (it makes it more real, right?) but also because I don’t even know where to start...

When someone says, “how are you?” — like genuinely asks me, not just the polite, in-passing, “how are you?” (which is actually often easier! But also brings a whole lot less connection and care in the end) — it’s so hard to know how to respond! Even if I share part of my physical/emotional experience, I rarely feel like I’ve touched the tip of the iceberg of what’s happening inside my body. 

I might say, “I’m in a lot of pain”, or “I’m feeling really rough”, but that barely touches the sides of how I’m really feeling in that moment. It doesn’t describe — or do justice to — the fireworks going off in ten different areas of my body, the deeply painful debilitating pain in my pelvis, the stomach-buckling pain in my abdomen, the sparks shooting down my legs, the daily migraine that never fully disappears, the nausea and flu-like malaise, the swirling anxiety and deep fear that things will always be like this, the worry that I’m not going to be able to stand up straight long enough for us to finish the conversation, the painful despair I feel about my life and my chronic illness, and the guilt and sadness that despite loving seeing my friend, all I’m yearning to be doing is lying down, in a dark room, with no stimulation...

It’s heartbreaking. There’s no other word that describes it better — the grief for the loss of my health, and my adoption of all these limitations, is indescribable. I don’t let myself fully feel it, or actually feel it much at all, because it feels too big — the sadness feels too big. I find myself feeling grief in random moments, such as when my friends tell me what they were up to over the weekend (and I spent the weekend/week in bed, and haven’t done any of what they did in a weekend in the last year...). Or when I see old photos of myself at the beach, surfing. Or when I have to say no, or hit “decline” on an invite, again, to an evening or day of something fun and nourishing that’s happening. Or when I find myself telling stories of past adventures (and there have been so many!), and I remember that my “adventure” or achievement at the moment is going to the fucking shop...

It’s in these moments I feel deep despair but also a desperate frustration at the unfairness of it all — the unfairness of being chronically ill. I would give anything to do just some of what I hear or watch my friends doing. I hate how jealous and resentful I end up feeling towards my friends and what they’re doing... It saddens me so much that I end up feeling guilty! 

I want to tell people how I’m not able to do hardly any of what they do every day. I want them to know what it’s really like to be chronically ill. I want to make sure they appreciate every moment of being well, because it’s such a fucking special gift - one you don’t realise the magnitude of until it gets taken away. I want to say, “imagine you could never do [insert most of the things they love] again...?” Or, “imagine if getting up, getting dressed, and cooking enough food for the day, was all you could do everyday, and even doing those things was a seriously painful and demoralising struggle?” 

I want to talk to them about it. I want to open up dialogue about this, but I feel scared. Scared of really saying how it is, of describing every little bit of my experience, and of feeling the deep grief that comes with this stating-the-truth. Scared of being heard, of being held. Scared of being “intense”. Scared of dampening the moment. Scared of reminding people that sometimes life is just unfair and shit. Scared of losing friends if I really show them me... I get lost in these cycles of self-talk and limiting self-beliefs. I forget the brilliance of my friends and I forget the lovability of me. 

I wish chronic illness was easier to explain. I wish that the internal suffering and physical restrictions that me and millions of others experience were easier for people to understand and empathise with (without having to actually experience it). There are so many bits of “life with chronic illness” that nobody sees, that after a while, build up and up and up so much that I feel like I cannot breathe under the (metaphorical) suffocation this experience of illness causes me. 

These are the bits I yearn for people to see — the bits that stop me being and feeling free, the bits that cause me to forget me.

0.0 ·
0
Featured Films
Living the Change: Inspiring Stories for a Sustainable Future (2018)
85 min Living the Change explores solutions to the global crises we face today – solutions any one of us can be part of – through the inspiring stories of people pioneering change in their own lives and in their communities in order to live in a sustainable and regenerative...
Generation Revolution (2017)
72 min Introducing the powerful stories of London’s new generation of black and brown activists, Generation Revolution explores the successes and unexpected challenges these inspiring young people face. Motivated by the desire for a more equal future, they embark on the rewarding...
Plutocracy: Political Repression In The U.S.A. (2015-2018)
440 min Plutocracy is the first documentary to comprehensively examine early American history through the lens of class. A multi-part series by filmmaker Scott Noble, Part I focuses on the the ways in which the American people have historically been divided on the basis of race...
Inhabit: A Permaculture Perspective (2015)
92 min Humanity is more than ever threatened by its own actions; we hear a lot about the need to minimize footprints and to reduce our impact. But what if our footprints were beneficial? What if we could meet human needs while increasing the health and well-being of our...
Within Reach (2013)
87 min Within Reach explores one couple's pedal-powered search for a place to call home. Mandy and Ryan gave up their jobs, cars, and traditional houses to 'bike-pack' 6500 miles around the USA seeking sustainable community. Rather than looking in a traditional neighborhood, they...
Fall and Winter (2013)
102 min This stunning film takes you on a hypnotic journey, reaching to the past to understand the origins of the catastrophic environmental transitions we now face. Over two years, director Matt Anderson traveled 16,000 miles to document firsthand our modern industrial world and the...
Trending Today


Love Films For Action? Become a Patron.

The goal is to go 100% ad-free by next year and become 100% member supported. Would you be willing to make a monthly pledge? A few dollars per month times the power of a few thousand awesome people will get us to where we need to be. Click here to join.

If you'd prefer to make a one-time donation, you can do that here. Many thanks!

Join us on Facebook
What Chronic Illness Looks Like Behind Closed Doors