boy writing in notebook at desk

When My Stepson's Writing Project Revealed How He Sees My Illness

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The concern and worry about how a child will interpret and understand a chronic illness of a parent figure can be troubling. Take it from me, a stepmom of an 8-year-old kiddo who knew me when I was well and knows me now that I am chronically ill.

There we were, sitting in the parent-teacher conference when the teacher said our child had written a family book. In the book he described his mom, his dad, his stepmom (me) and himself. Since becoming ill I have worried that he would look at me as not as “fun” as before or just someone who “holds us back.” He knows I am sick and he recognizes my illness and when I’m not feeling well. When he really wants me to do something he thinks ahead of time about how he can make it easier for me. In the past he has told me that he wants me to go on a hike with him on our property and that he has already gone up the hill and found the perfect rock where I can rest. He looks next to me now when I’m sitting on the couch to make sure I always have water. He especially steps up if his dad is out of the room.

Yet I still worry sometimes. I never want to embarrass him or be the stepmom “who uses oxygen.” To be honest I think when I use oxygen it worries him a little bit more than anything else. If he notices that I’m using oxygen he makes a point to come give me a hug and tell me he loves me.

I tensed when the teacher started reading from his book. He wrote, “Amy is the stepmom of the family. She is 31 years old. She likes to sleep. She is important because she loves us so much and she makes us food and she makes us donuts.” I was relieved because he also wrote that his mom (who is perfectly healthy) likes to sleep, too. It’s just some weird adult thing. I’m not a mutant. He doesn’t think of me as only being sick. He remembers the other fun things about me, too. He knows I bake and make yummy foods and snacks. Most of all, he knows I make donuts for him and I love him.

Maybe I have to rest a little bit more and drink more water, but he just thinks of it as an “Amy thing.” When I pass out in front of his friends he says, “Oh yeah, she just does that sometimes.” He knows that Aunt J doesn’t play Monopoly and that’s just an Aunt J thing. He doesn’t hold it against her. It’s just another thing to remember about her.

I’m not weird. I’m not an embarrassment. I’m the maker of donuts and everyone knows donuts are a love language.

Follow this journey on Smiles in the Trials.

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Thinkstock photo by dolgachov

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4 Gifts Chronic Illness Has Given Me

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It’s no secret that being sick really sucks. Losing friends, not being able to work and spending all your time at the doctor’s office sucks. But sometimes you have to go through hell to become who you are supposed to be.

Over the past year, I have discovered so many things I never could have learned in a classroom or on a job. Sometimes I feel as if I’ve already lived a whole lifetime and these other 20-somethings running around are just youngins who don’t know nothin’ yet. I’ve discovered that pain and struggling can teach you amazing things if you are willing to learn.

Here are four gifts I have received as a result of my chronic illness:

1. The Gift of Proactivity

Before I became really ill, my social anxiety was so bad that I was terrified of standing up for myself in almost every context. I was so afraid of “rocking the boat” that I became a passive wallflower who avoided confrontation like it was the plague. I wanted people to like me so badly that I was willing to stuff my own wants and needs under a mattress to rot.

But as I became sicker, I was forced to speak up for myself in all kinds of situations because my health depended on it. After a while, I didn’t mind being “that girl” who made a scene negotiating with the waitress about finding a dish that would meet my dietary restrictions. I no longer hesitated to ask friends and relatives if they could unplug their smelly Glade candles while I was over for dinner, because if they weren’t willing to make small adjustments for me then I couldn’t risk being there. (Shout-out to anyone who’s ever removed a Glade plug-in or Scentsy candle for me – you know who you are. Thank you!) It turns out most people are happy to make little adjustments to help a sick person out – who would have known? And now that I have a more courageous heart, I don’t mind asking for help one bit.

2. The Gift of a Clean Slate

When you experience a life-changing illness, everything you know is turned upside down. The pieces of your old life lie scattered across the floor and you have a blank playing board staring back at you…so what do you make of it?

Some people lose everything in a flash; a car accident leaves a professional athlete paralyzed and her whole identity is wiped away in an instant. Others, like me, lose little pieces of themselves over months, until one day we look into a mirror and realize we don’t recognize the face staring back at us. When you lose your independence, your hobbies and your job, who are you now, without any of the labels you took so long to earn? I had so many labels: “student,” “musician,” “rock climbing instructor,” “girlfriend” – and losing them was the best worst thing that ever happened to me.

Losing things sucks, but that loss also makes room for you to love new things. Once I couldn’t eat any of my old favorite foods, I learned to love a new set of foods (which was a huge deal for me, ’cause I’m a picky girl). For instance, now I love ginger and all things in the Asian aisle of the grocery store! But I never would have tried anything new if nothing was taken away from me in the first place. Another new love I discovered was a love for design, for writing and creating things. I found these passions only after I had lost others. Apparently I need to be dragged behind a horse before I’ll go out and try something new, but if that’s what it takes, then so be it!

3. The Gift of Real Relationships

Back when I was a healthy(ish) person, I could get away with relating to friends on just a few levels: drinking, boy-talk and general life drama. I would date people with whom I had very little in common, knowing that the relationship was shallow, but not being bothered to change a thing. I could float along through college, not caring which of my relationships were genuine and which were fake. But being sick turned that way of thinking upside down. My illness, my life restrictions and my lack of energy acted as a sieve that very quickly filtered out all of the friends and acquaintances with whom the relationship was not built on true love and caring.

I learned that when things get difficult and suddenly it is not super-convenient for someone to relate to you, a lot of people fall away. That doesn’t make them bad people, it just makes them not the right people for me. I am guessing most people don’t figure out who really cares about them until they hit a mid-life crisis or develop some life-altering disease later on in life, but I had the benefit of watching my weak connections fall away in my early 20s. Now I know that any friends who have stuck around through the hard times are the ones I really want to spend my “spoons” on.

4. The Gift of Gratitude

Yes, this is such a cliché, but it’s true: you really don’t appreciate things until you lose them. For example, you don’t realize how much you adore and depend on your smartphone until it breaks and you have to go without it for a week. You also don’t think about how amazing your body is until it starts breaking down on you. You aren’t cognizant of your every heartbeat until you have a heart condition and each beat is no longer a guarantee.

I used to take things like my eyesight, my balance and my breathing for granted. But now I am truly thankful for every heartbeat. I used to get bored so easily, and I was always looking for the next thrill in life. But now I see how beautiful life really is, even if I have to watch it all through my bedroom window. Now I cry a tear of happiness when I can step outside and bask in the warm sun for an hour. When you live in a dark cave, every little candle is like a blazing fire and you are that much more grateful for it.

In closing: I didn’t ask for these gifts, but I’m glad I got them anyway. They came wrapped in both joy and sorrow with a big, bright tag that reads: “No returns, refunds or exchanges. And you’re welcome.”

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Courtney Privett Creates 'She Persisted' Disability Illustrations

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Earlier in February, Sen. Mitch McConnell (R-KY) admonished Sen. Elizabeth Warren (D-MA) on the Senate floor for reading the words of Coretta Scott King in opposition to Donald Trump nominating Jeff Sessions attorney general. Commenting later on his dismissal of Warren, McConnell remarked “She was warned. She was given an explanation. Nevertheless, she persisted,” words that, unbeknownst to him, would embolden women across the world.

One woman giving those words new meaning is Courtney Privett, 34, a California-based author and illustrator, who uses “Nevertheless, she persisted,” as the theme for a series of illustrations around chronic illness and disability.

“The original illustration was a personal project I created out of some of my own experiences. I’ve heard a lot of negativity in my life and kept going in spite of it, so the piece was art therapy for me,” Privett told The Mighty. “One of the first versions I did was called “We Persist,” about things said to people with invisible disabilities and chronic illnesses.”

The illustration which features speech bubbles filled with comments such as “You’re so brave,” “You don’t look sick,” “You’re too young to be sick” and “But you look so good,” comes from Privett’s own experiences living with several chronic health issues including narcolepsy, depression, anxiety and chronic kidney stones. “Over the years I’ve been misunderstood, insulted and pushed aside, both intentionally and unintentionally, by people who don’t understand what I’m going through,” Privett explained. “I’ve tried to turn all of that into a positive, though.”

Even the way the comic is designed is inspired by Privett’s experience. “The thought bubble layout came from the way my mental illnesses like to throw invasive thoughts at me,” she said. “Sometimes those negative thoughts are so loud that it’s hard to convince myself that they aren’t true.”

After her first illness-inspired illustration, Perth was asked by the Perth Sisterhood of Support, to make an illustration about endometriosis.

 

 

“I felt it was important that I not speak for other people whose backgrounds and experiences are different from my own, but rather work with them as they speak for themselves,” Privett said of her collaborative pieces. “I’ve always been quiet and shy, so it’s a little overwhelming to find out that my own voice has power.”

So far, Privett said, the response to her illustrations has been positive. “I’ve had a few trolls here and there, but I’ve found they don’t bother me like I feared they would,” she added. “If anything, they prove my points, both that the language we use toward others matters and that we can continue to persist through what is thrown at us.”

Privett is currently working on more posts featuring a variety of different conditions. Her most recent disability-related post featuring a woman in a wheelchair was inspired by a comment from a follower about the comments her child, who uses a wheelchair, receives.

“Often times, we aren’t aware that we’re saying something that is hurtful to someone else, simply because we haven’t personally experienced their situation,” she said. “[O]nce we realize how much our language matters, we can work toward speaking in ways that raise those around us.”

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15 Lies People Believe About Staying Home From Work With Chronic Illness

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When you stay home from work or don’t have a job because of your chronic illness, it’s hardly a vacation. More than likely, your symptoms are flaring to the point where you physically can’t work, and you’re spending the day dealing with pain and fatigue, not having fun. But to outsiders who have only experienced illnesses that get better after a couple days, not working due to a chronic illness may (wrongly) seem confusing or unnecessary (especially to those who claim you “don’t look sick”), leading to hurtful comments that it “must be nice” to stay home.

We asked our Mighty community to share the lies people tend to believe about staying home from work or not working because of a chronic illness, and the truth about what it’s really like. It’s just not true that people with chronic illness are off enjoying a little vacation. Next time your co-worker or friend is out sick or not working, remember that they need support, not judgment.

Here’s what our community told us:

1. “People seem to think it’s a holiday and that I’m lazing about enjoying myself, but in reality I’m tired and in pain and/or feeling sick. All I want is to be able to go back to work and be a productive member of society. Living like this is not anywhere close to a holiday.”

2. “People think I’m cooking or cleaning when it really takes all my strength to get up to go pee or get a glass of water.”

3. “[Co-workers think] waking up any time after 8 is a ‘sleep in’ when in reality it’s never enough sleep. When I say I got up at 10 a..m. or 1 p.m. to shower and they call it a ‘lazy day’ when in reality it’s a regular, difficult and far-from-lazy day. I can actually remember exactly where I was and when it was the last time I woke from sleep feeling like I used to before I got sick (energetic and well rested) because it’s only happened once in the last five years.”

4. “[People think] I cancel appointments or call in to work flippantly, secure in my own sense of entitlement. Instead, I experience crushing guilt and spiraling anxiety when I’m least able physically and emotionally to deal with it.”

5. “We aren’t ‘resting’ when we are in bed. When the body is under attack it is fighting to survive, there is no ‘resting’ involved!”

6.I hear, ‘I’m so glad you got a day to relax. I bet you feel better.’ Nope, I don’t. I just needed the day to continue surviving. Because, I just couldn’t.”

7. “I’ve been asked: ‘Why can you still go on a vacation but you can’t work?’ Or ‘You look just fine on Facebook’… as if because I can’t work, I should never be allowed to enjoy myself, ever!”

8. “You’re over-exaggerating your condition. My last manager seemed to think I could work from home even in a bad flare. I have Crohn’s disease and rheumatoid arthritis. When both flare I can’t even dress myself! I cannot get up and down stairs and end up bed-bound in agony. When they see me in the office I look ‘fine,’ I just have a bit of a limp. Yeah, because at that point I’m having a better day with my health. What they don’t understand is how much effort it takes to get into the office.”

9. “I think a misconception is that a sick day is a day of rest when it’s really a day of struggling endlessly to find any sort of bearable way to relieve symptoms.”

10. “[People think] if you looked fine yesterday and return to the office ‘normal,’ then you weren’t really that sick to begin with. They don’t understand that if they felt like we do on our ‘normal’ days, they’d probably never make it into work.”

11. “I get frustrated when people say they work because they cannot afford not to, but it’s not always a choice of finances over pain/illness. Every time I tried to return to work I was told no.”

12. “Often people seem to equate work absence due to chronic illness with work absence due to acute and temporary illness (even something as simple as a cold). They believe it’s an experience with discrete boundaries and a definitive recovery signaled by the ability to return to work. In reality it is a constant series of negotiations and sacrifices.”

13. “People mostly comment on how I’m not working, or ‘skipping’ things, like I’m picking and choosing and using being sick as an excuse. But they don’t realize how frustrating and sad it is to miss all of those things, as well as the outings or opportunities I miss that they don’t see.”

14. “[People think] it’s fun. It’s really not fun to stay home and be unable to work! I’m not having fun, I’m often in bed in a lot of pain. I’d love to be able to work!”

15. “People think we have less to do. Managing the eight-plus specialists, therapies (physical and psychological) family and home is so much work. Also diets and trying to find answers is a lot of work. Also everyday activities take accommodations and three times as long at times.”

What lies do people believe about not working due to a chronic illness? Share in the comments below.



15 Lies People Believe About Staying Home From Work With Chronic Illness
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How Getting Injured in a Fall Taught Me to Slow Down and Be Mindful

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Providers regularly ask whether I’ve fallen in the last 30 days. Last year a nurse insisted that everyone on the floor was considered a fall risk, handing me bright yellow slipper socks with tread on both sides and wrapping a band of the same color around my wrist. Since then my dismissal of this particular question has become increasingly emphatic. I take pride in my ability to extricate myself from lengths of oxygen tubing more gracefully than the average geriatric patient.

Having procrastinated on blogging, today I can affirm I have not fallen in the last 30 days. It has been 47 days since my last fall, and oxygen tubing is inculpable. I tripped on uneven concrete walking in flip-flops intended to make changing into my indoor rock climbing shoes less of a hassle. I fractured a bone in my right palm and had to wear a splint.

I felt particularly unfocused in the weeks leading up to my fall (probably a contributing factor in retrospect). Performing tasks with one hand instead of two slowed me down and made me more mindful. My morning breakfast routine involves a bowl, a box of Cheerios, a banana, a knife, a spoon and a quart of milk. I had to retrieve each item individually and arrange them on my dining room table for proper combination. While I’ve experienced astounding benefits from getting my body moving early and often, I’m finding it equally important to make time for stillness.

Prednisone makes my hands shake, increases my anxiety and gives me bursts of manic energy. Unwilling to stop moving my feet, even with a camera in hand, I missed opportunities to capture beauty. Hours glued to Adobe Lightroom revealed shots marred by motion blur, compositions one permutation away from success. Photographer Minor White famously urges:

“When you approach something to photograph it, first be still with yourself until the object of your attention affirms your presence. Then don’t leave until you have captured its essence.”

Since I normally swing my camera body around in my right hand, I thought I’d have to stop taking photos entirely while my hand was splinted. Instead, I used my left hand to hold the camera and two right hand fingers for pressing buttons and turning dials. Each shot took time and effort, forcing me to pay attention to what I included in the frame.

During a portrait session, I strive to make my client feel comfortable with me and my camera. A lot of people, myself included, are intimidated by a giant lens pointed straight at them. The moment I know I am being recorded, my face and limbs stop behaving naturally. If I can get my subject to relax and forget about the camera for a moment, I can take a photo that captures genuine emotions. In order for them to be calm in front of my lens, I need to be calm behind it.

The factors that make me impatient in the aftermath of my operation are not all chemical. Long-term goal setting has always been tenuous in my chronically ill state. I’m struggling to convince myself that making the most of my second chance at life does not mean being in the greatest number of places in the shortest amount of time possible. While I don’t want to lose my reverence for the gift of life, I want to find stability and allow for relaxation. I do not have to accomplish everything today – just some of the things. The challenge is living every day like it’s my last without being completely panicked that it actually is my last.

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Thinkstock photo via Paul Sutherland.

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Chronic Illness Vs. Sickness

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A video for anyone who thinks being chronically ill is the same as being sick.

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Real People. Real Stories.

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