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Why I Only Let People See the 'Real Fake Me' Who Doesn't Look Sick

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I’m the girl who has it all – that’s me!

I’m the girl over there who always blow-dries her hair and has time to do her makeup. I’m the girl who always plays with her kids in the park. I’m the one who is always doing exciting things. I’m the girl who’s been partying with her friends all weekend. I’m the girl who’s always at the beach. I’m the girl who works, runs the house and keeps it all together! I’m the girl who has the immaculate house. I’m the girl that has so much time to herself. I’m the girl who has beautiful holidays.

I am that girl, I really am, but I’m also someone else. I know you look on, watch and judge; the crucial thing is, when it comes to me, you’re missing a huge part of the story. All you see is what I allow you to see. I try to be my best for my family and my friends, but mainly for me.

I know my daily limits, and I work to a strict timeline. I photograph the best bits, I record the funny things, I tell my friends about the outtakes. That doesn’t mean I’m not in pain, it doesn’t mean I’m not feeling dreadful, it doesn’t mean “it’s” not real.

I’m creating and living in my own movie, “The Best of Me,” starring “The Real Fake Me.” That’s all I want you to see: the girl who’s holding it all together, the one who makes everything look breezy. I keep going with the things that keep me going and when I really, truly need to stop, I stop! I close the curtains, I turn off the cameras, I stop uploading to Instagram and Facebook. I ignore Twitter, I stop my emails from bleeping. I switch one life off while the other takes hold. This is the best and only way to keep being me! When a bad day hits, no one wants to see her. No one wants to be reminded of the state she gets into when “it” takes over. I want to be Me – I want you all to see me, not her. She isn’t me. So no, you don’t see her, you never see her. I’ve only introduced you to the real, fake me.

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Real fake me pic I’m the girl over there who always does her hair and makeup no matter what a struggle it can be.

I’m the girl who always plays with her kids in the park for five minutes, no more, because I need that energy for getting us all home and feeding everyone.

I’m the one who is always doing exciting things but I sure as hell pay for it.

I’m the girl who’s been partying with her friends all weekend after I’d cancelled, last minute, the previous eight attempts to get out because I’d maxed out!

I’m the girl who’s always at the beach as long as the next day is booked in as a rest day.

I’m the girl who works, runs the house and keeps it all together in between naps, doctor appointments, hospital trips and more rest.

I’m the girl who has the immaculate house in photographs.

I’m the girl who has so much time to herself and spends it sleeping so I can get back to life.

I’m the girl who has beautiful holidays where I spend lots of time missing out, in pain and resting in hotel rooms.

So here I am, the Real Fake Me. Hello!

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To Pat Toomey, From a Chronically Ill Teen: I Am Not a 'Burned Down House'

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I am a teenager living with five rare illnesses. I am a teenager who experiences unimaginable pain every day. I am a teenager who requires health care. Those are three facts that I know all too well. These three facts are the reason that as soon as word of the possibility of the Affordable Care Act being repealed reached me, I began to worry. I worried about my future as I rely heavily on my insurance. The truth is that yes, I do need my health insurance, and yes I am an unpredictable patient, but I am far from a “burned down house,” which is what Senator Pat Toomey compared people with pre-existing conditions to during a discussion about health insurance at a Senate confirmation hearing.

I am a girl who pushes past the unbelievable pain every day in order to move forward with my life. I go to school, I do my homework, I write articles, and most importantly I have a bright future. At the moment my illnesses are at a point where I can still do these daily activities along with some fun tasks like going to dances. Do I sound like a broken house to you? I’m the first to admit that I’m a teenager who struggles every day plagued by illness, but I also don’t let these conditions define me. Every day I find the strength to push through the pain and dizziness and get dressed, go to school, and further my education.

The minute my health care is taken away, I lose this ability. Medication prices skyrocket, doctors become insanely priced, and emergency departments are out of the question. Without these services, I will fall apart. If you want to see a burned down house then sure, take away my health insurance, but currently I am not only surviving, but I am thriving. If you want to see someone who is a working member of the community, a writer, a productive citizen, then everyone needs to take a step back from this situation. Take a step back and put yourself in my shoes. Realize that I do struggle to keep on my “I’m OK” face every day, but there are moments that I am truly OK. Outside of the nights spent screaming in pain, there are days spent writing, laughing, hanging out with friends. The minute I lose my medications that keep me functional and my doctors who treat me though this all melts away. My world as I know it will be gone in one fell swoop.

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It comes down to senators like you, though. You are the people who dictate whether or not I have a quality of life. You decide whether I become that burned down house. Know that at the moment I am not a burned down house. I may be a house in constant need of repair, but I am still standing; I will stay standing. You can try to knock me down as many times as you can with your backwards politics and uneducated statements about my illnesses, but you cannot knock me down. I urge you to take a moment and imagine a day in my shoes. Imagine being 15 years old with every joint of your body dislocating, chronic migraines, chronic fatigue, unbearable pain, and constant blackouts. Now imagine pushing through this to go to school every day to have fun and continue your education. Does this sound like a burned down house? I don’t think so, and I believe if you reevaluated your statement you might come to the same conclusion.

I ask you, Pat Toomey, to do three things for Americans living with pre-exisiting conditions. I urge you to reevaluate and apologize for your statement. I urge you to consider your words and how they may affect others in the future. Finally, I urge you to vote to keep the preexisting illness clause that keeps me alive. I am not a burned down house. Vote to save my life.

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

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Photo by Gage Skidmore

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The 'Six Feet Under' Line I Remember When I Hear Opinions About My Health

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Six Feet Under” is a series that I find myself returning to time and time again. At different points in my life, it’s revealed something new to me that I didn’t see before, or at least appreciate. I’m drawn to it for its candor and unapologetic bravery with which it takes the things in life’s peripheral vision and makes us look directly at it. The more we see it, the greater our understanding of it grows, and we become less afraid. You could say the show has influenced me to look more closely at the way my life is being constructed and influenced.

So what does this have to do with chronic illness? There is a scene in the penultimate episode, “Static,” in which a grief-stricken Claire drives to the site where her brother Nate is buried and has an imagined conversation with his memory. As the pain pours out of her, he cuts in: “Stop listening to the static.” He explains that everything – life, death etc. – has static spread through it, like the noise when the TV isn’t picking up a signal. It’s noise and nothing else, he says; if you listen to it too much, it’ll do you in. The static is the commotion of everything else in the world except yourself.

A person experiencing chronic illness knows this static can be tremendously harmful. It seeks to deny our reality and by listening to it, we deny it ourselves. It seems like everyone has an opinion on what’s happening to us – everyone wants an opinion, like sharing it will change its course. It prevents us from being vulnerable, from sharing our essential truths. Furthermore, when we listen only to the static, we’re trying to fulfill the world, but is it reciprocated? Is our existence validated? Who’s listening to us?

When we’re suffering, we seek understanding and empathy. It’s a natural thing we do as members of a society in which we want to feel counted. Chronic illness is a part of a person who matters just as much as anyone else. But we battle against a concept of wellness and recovery with a focus on elimination and conditions/cures that are already well-understood. Chronic illness is complex; it has no established, uniform processes. So the conversations – well, commotion – around that is framed by the expectation of a process and recovery outcome, and when none can be found, blame is assigned. The people experiencing chronic illness are sometimes invited to participate but rarely valued. Its effects can be broken down into things we’ve all had to hear: “You’re still sick?” “Are you sure it’s real?” “Don’t you want to get better?” “The pain can’t be that bad.” “It must be nice sleeping all you want and not having to work.” “Blah blah Big Pharma blah…” “You could do that yesterday so you must be faking.” “You’ve got a sickness mindset.” “Just think positive thoughts.”

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Think about what we feel when we’re trying to listen to something on the radio or watch a TV show and the signal keeps dropping out. It drives us up the wall in no time. Important fragments of the message are getting chewed up by the noise and we’re missing vital pieces that tell the whole story. We start swatting at the device, fiddling with knobs, swearing at it like we’re eight drinks in at the bar and we want to pick a fight. But what’s the intrusive sound in all the blips and hisses? Nothing. It’s chaos. It existence is based on interference.

You see where I’m going with this? That’s not to say that some things aren’t worth listening to in the world of someone with a chronic illness, and I’m not advocating shutting everything out full-stop. But if we recognize that something is interfering, that’s something that isn’t going to be helpful to us and is just getting in the way of what matters to us.

I believe the kindest thing we can do for ourselves is to stop listening to the static. Although chronic illness has a way of robbing us of so many choices, we still possess the power to decide certain things are worth listening to or whether they’re just noise. This can only help our well-being, because as the chaos begins to settle down, we can hear a voice clearer and clearer that we recognize as belonging to ourselves. The voice tells us what we want for our existence before anyone else chiming in one what we can/can’t/should/shouldn’t have. Tune in to yourself first and foremost. The rest is static.

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Photos courtesy of Facebook: Six Feet Under and YouTube.

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The Legacy I'll Leave as a Mom With Hidden Chronic Illness

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As I walked my 3-year-old to school this morning, the two of us chatting excitedly, I suspect I looked like any other mom on the school run. Covered by a rain slicker, cardigan, and turtleneck sweater, on the outside I look like your average under-slept parent. But under the woolly winter clothing, another kind of mom is wrapped inside.

I shy away from passing the time talking with other parents because I fear that after a while, I will inevitably mention feeling tired or being ill. If I somehow manage a conversation that does not include a remorseful disclosure about my health, I fear that I may make a new friend who will become frustrated when I cannot commit to play dates or trips out. If I do make it for a coffee or chilly visit to the park, eventually the activities wear me down and I know at some point I will have to explain.

There was a time when a younger version of me vowed not to have children. I didn’t want to pass my uncertain health legacy onto someone else. My mother had passed hers to me unwittingly at 23 years old. She went on to lead a life engulfed in anxiety, depression, chronic illness, and finally, isolation. I look back now with empathy on a woman who struggled in ways I could not have understood as a child. Those memories are illuminated by my own experience as a chronically ill parent. I know now she did the best she could, as I do.

What I hide under layers of winter clothing and in the warm and unconditionally loving arms of my little boy is a coil of conditions and symptoms. While they seek to tighten their hold on me each day, I struggle against them. They whisper dark possibilities: mycolonic jerks at the grocery store, sudden pain on a walk out, or embarrassing brain fog creating awkward pauses and forgotten names or details.

Despite their warnings, the voice of my strength beckons to me and reminds me that I am not their prisoner. My mother’s struggle and my own has given me perspective and made me more brave that I could have imagined. It has taught me that perseverance aids survival and I have so much to survive for.

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Little boy looking up at the sky in wonder.

I walk home with my little boy, the sun on our backs in the afternoon, and I feel optimism wash over me. I know that despite my chronic struggles to maintain mobility and health, I am providing my son with a framework for building his own inner strength and developing empathy through my experience. My mother didn’t have the tools when I was young to openly share her own struggles and help me understand her and them. I feel strangely blessed by my circumstances and how they help me to plant the seeds of empathy and compassion with my son.

My gift to my son will be to teach him that what we may see on the outside isn’t the entire person. We are more complex than our appearance. My wish for him is to suspend judgement, extend compassion, and spread understanding. He has a great teacher, if I do say so.

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Photos by Duncan Cowley

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If Your Illness Is Overwhelming You Today

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I’m having “one of those days” today.

I generally hate that phrase to be honest. Its connotations are always so negative and dismissive. Besides, “one of those days” is generally most days with a chronic illness.

But today my illness is overwhelming me. It’s getting all up in my grill like that drunken potential suitor at a bar who just will not take “No, I don’t want a cosmopolitan, I’m not Carrie Bradshaw” for an answer.

My disease feels like it’s everywhere today: it’s in my thoughts, my anxieties, my joints, my gut.

I am trying to hold down a full time job with this, but today it’s proving to be an almighty challenge. OK, so let me be clear; every day is a challenge. Every. Day. But a challenge I can usually quite adequately overcome. But some days, like today, it’s just too hard. I’m close to tears writing this because it brings home how utterly exhausting chronic illness is. I want to give up and I know I can’t. What to do? Just wave a white flag and hope someone magically heals me? Believe me, if that worked I’d be purging every haberdashery of white fabric stat.

I can’t stop thinking about it. Being “ill,” that is. When that is the default, where is the space for everything else? Where do I squeeze in my work, my family, the man I love?

I’m not looking for sympathy here. Absolutely not. There is generally not anything we want less than sympathy. I’m trying, clumsily, to explain that illness comes in peaks and troughs. It’s a roller coaster we can’t get off, and sometimes that realization is terrifying. Like today, for me.

I know I am ill, I know I have to do X, Y and Z to stay “well,” I know I have to go to the hospital and see my doctors, I know all the things I should and shouldn’t do to keep myself alive – but sometimes I want to throw my hands in the air and have an almighty tantrum because I don’t want this life.

Much like a selfish lover, this (internal) tantrum usually leaves as quickly as it comes, but the feeling it leaves can linger long afterwards.

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Today I am exhausted and overwhelmed and struggling to get a handle on what to do next. But I am here, writing this, and venting is making me feel calmer. I am breathing slower, in, out, in, out. I am putting one foot in front of the other because I have to. I know this will pass and living with this will get easier because it has done before. I have achieved more than I ever thought I would despite this disease and will again – and for anyone who needs it today, so will you.

It may not feel like it now, but the rollercoaster has to stop at some point. Fasten your seatbelt and close your eyes over the bumps. It gets fun again, I promise.

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Sen. Pat Toomey Compares Those With Pre-Existing Conditions to Burned Houses

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A 24-second-long CSPAN clip of Sen. Pat Toomey (R-PA) is making its way around social media after the Republican Senator compared people with pre-existing conditions to burned down houses.

The clip, which is part of the Senate confirmation hearing for Rep. Tom Price (R-GA), Donald Trump’s pick for Secretary of the Department of Health and Human Services, shows Toomey questioning Price about the Affordable Care Act (ACA) and insuring people with pre-existing conditions.

Toomey asks:

Now one way to force it [coverage] is to force insurance companies to provide health insurance coverage to someone as soon as they show up, regardless of what condition they have, which is kind of like asking the property/casualty company to rebuild the house after it’s burned down.

The soundbite is preceded by Toomey explaining how 43 percent of Pennsylvanians have one choice of insurer under the ACA and then asking how to reform that system and keep coverage for pre-existing conditions. Toomey noted that forcing insurance companies to “show up” is one way of ensuring coverage for people with pre-existing conditions and asked Price if he believes there are more effective ways achieve this without a mandate.

In a request for comment from PennLive, Toomey’s spokesperson defended the Senator’s metaphor, stating:

Senator Toomey was making an analogy about how insurance markets work, and why Obamacare is in the midst of a ‘death spiral,’ where prices for insurance continue to rise, and healthier, wealthier and younger Americans are finding it more appealing to go without insurance.

Regardless of Toomey’s explanation, his constituents and those living with pre-existing condition have take to social media to explain why you can’t reduce people with disabilities and illnesses to burned down houses.

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