When a Group of Teenagers Wrote Poetry About Coping With Chronic Illness

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Recently, I was talking with a friend about how to balance my self-care and advocacy efforts. There are so many important causes we’re all invested in. Sometimes we forget to take care of ourselves, or when we finally do give ourselves attention, we don’t have the skills or knowledge about how best to cope with challenging situations or tough days. At the root of our conversation was the theme of community. We agreed that having a community was essential. If your community is associated with your advocacy that’s great, but if it’s something totally unrelated then you can use those important connections to recharge and continue the great work you strive to do. We all need supports in order to keep moving forward.

In Providence, Rhode Island, a group of teens living with a chronic physical illness are embracing this sentiment wholeheartedly. As members of the The Adolescent Leadership Council (TALC), they are taking time out of their busy lives to come together from their various schools and activities to share their experiences, challenges and victories associated with being a leader, a teenager, and living with a chronic physical condition. Together with mentors and clinicians, they’re building skills and conversations about advocacy, independence and assertiveness.

TALC mentors like myself often remark about the specialness of this group. We agree that our experiences growing up with a chronic physical illness would have been much different if we had resources like the ones at TALC.

As mentors we’ve shared a number of conversations about the qualities and actions of important role models in our lives. Often, we circle back to recollecting meaningful conversations, moments, or experiences when someone “got it” or asked the “right question.” What’s happening at TALC is one just example of how we can create
communities of people who live with challenges most teens/people won’t even encounter, and learn and grow together.

Recently, our teens created acrostic poems to identify strategies they could use to cope in stressful situations. Their insights are incredibly compelling. The teens gave me permission to share their words with The Mighty community and illuminate their voices beyond the space of our group. Maybe some of these strategies will be helpful to other people!

Poems by TALC teens about how to cope in stressful situations:

teenage boy showing poster of acrostic poem
A member of TALC shows off his poem.

S.H.A.R.E.

Selective about information

Have an understanding

Advocate

Respect

Evaluate emotion

T.E.A.C.H.

Take a step back

Explain the situation

Ask if they understand

Correct if they are wrong

Have confidence in what you say

C.A.L.M.

two teenagers standing and talking about a poem written on a poster
Two TALC members discuss their poems.

Control what you can

Advocate for yourself

Listen to yourself

Mindfulness and music

C.H.A.N.G.E.

Can do it, cope with it!

Hope for the best

Accept the situation

Nothing is forever

Go with the flow

Evolve into a stronger person

It’s our hope that many more people can benefit from the work of these impressive teens. Their compassion and commitment to being leaders and advocates for themselves and others is truly something to be proud of. I know that I am motivated each day by their persistence and positivity. Like The Mighty, this community is special and celebrates difference and difficulty in a unique and intentional way. Through challenges, and as a community, we’re finding strength and building leaders. We hope you can, too!

group of teenagers lines up and showing off posters inside room with tall windows
Members of TALC working on their poems.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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15 Things I Do to Keep Smiling on Bad Days With Chronic Illness

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Why is it worth your time to seek out joy? Why bother finding smile-makers, as I call them?

There are numerous health benefits from smiling and laughing such as reducing stress and anxiety, releasing endorphins, relaxing muscles and decreasing pain.

These are just a few as there are lists and lists of supposed health benefits from laughing and smiling, most of which I can buy into.

I believe you get to choose. You don’t have to choose joy. You can be pissed. You can scream. You can have a pity party. You can start ignoring people and cut off contact. You can get fall-down drunk. You can focus on all the things you “used to be able to do” and “all the things you wish you could do.” One thing I know for sure is that those options do nothing for me. I can wish everything was “back to normal” as much as I want, but it won’t change anything. All it does is get me spending energy on the uncontrollable and cements the fact that I have no ability to direct my life to be how I want it to be. Congratulations, I’ve found another way to feel defeated and lose.

I believe we have to deliberately hunt smiles down sometimes because let’s be honest, it’s really easy to see and feel the bad most days, but remember, we are choosing to look for happiness and laughs.

I want to make it clear that I didn’t exactly skip out of the doctor’s office after getting my diagnosis. No, I basically went through the cycles of grief. I tried pouting. Everything annoyed me and bothered me. Anything encouraging that anyone said just seemed cheap and silly. I got angry easily. I tried to pretend I didn’t have anything wrong with me some days. One thing I know for sure is that I can’t fake consciousness when I’m busy being unconscious. I didn’t find any of those tactics to be quite as beneficial as trying out joy.

Here are some of my personal best tips I use to keep smiling:

Keep my mind busy. I have done logic puzzles every day since I’ve been out of the hospital as a way to distract myself, but still keep my brain engaged.

Find a new book or TV series that I enjoy.

Try new activities and challenge myself. I got out of the hospital about six months ago. Since then I’ve learned how to play cribbage, I refinished and distressed a wooden chair (obviously this happened over several sessions and with supervision), I took up acrylic painting, and I have started wood burning. If you don’t know where to start, just go to Pinterest and type in “crafts” or “DIY.” You’re sure to find something new and exciting to try.

Start silly traditions. My husband and I DVR “Jeopardy” and we get coffee and watch. It’s silly, sure, but it’s something fun to look forward to and we can compete with each other. Of course it’s not really much of a competition because he knows about every war in history and speaking of history, he apparently paid attention in history classes. The only categories I usually don’t have competition for are anatomy and pop culture. We each have a “set answer” for categories we know we’ll never get. For instance, for everything French, he says Charles de Gaulle. For me, for anything pope-related I always say Pope John Paul II. It works out occasionally.

Get a dog. I know this may not be an option for everyone, but my dogs have made me smile countless times during our all-day snuggle sessions.

Make someone else smile. Send a sweet text. Mail a happy card to a friend. Taking the focus off yourself is extremely beneficial.

Find a worthy cause to support in some way. If you don’t have money to donate, help publicize and spread awareness, or spend time in prayer for the cause. We all have something to give no matter our condition or status.

Get a devotional or journal. A journal is a safe place where you can be honest with yourself about your feelings and frustrations. You don’t have to pretend they don’t exist, just try to spend more time thinking about the good.

Make a list of the blessings in my life. Sometimes we get sidetracked dealing with nausea, dizziness, fainting, tremors and pain and we forget to notice that we have indoor plumbing. Or that we can afford the “good coffee creamer.”

Stay social. I know it’s hard. Force yourself to plan one or two events each week where you interact with other people. Whether it’s having a friend over to watch “The Bachelor” or getting together for coffee or a meal, it’s worth your time.

Set reasonable goals with exciting rewards. Showers can be hard. Doing hair and makeup can take incredible effort. I make it something simple, like I can have half a cupcake with my coffee if I get it done. Or, reward yourself with a latte after physical therapy on hard days. Anything to look forward to and help motivate.

Find a sport to love. If you don’t already, I think you’re missing out! I suggest hockey and college football. If you have a team to follow you have something to cheer for and keep up with. It’s a good distraction.

Watch a stand-up comedian.

Realize my health has changed. Don’t hold yourself to the same expectations you did before. Your house isn’t going to be as clean and your meal planning and prepping now depends on day-to-day symptoms.

Be honest with myself and others. If I’m not feeling up to going somewhere, I’m honest and don’t try to force it.

woman lying on bed wearing hospital gown
Amy in the hospital.

Follow this journey on POTS: Finding Smiles in the Trials.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

*Sign up for our Chronic Illness Newsletter*

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Why I Won't Let the 'Grey Days' With a Chronic Illness Win

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I’ve had a grey week — one of those weeks where the cold seeps through skin, bone and muscle to drain every ounce of energy. It’s been a strange week, filled with back-to-back hospital appointments, disappointments and loneliness.

I’ve spent most of my days in waiting rooms or in discussions with medical professionals interspersed with brief interludes of feeling miserable before putting on a fake smile to greet consultants, technicians, nursery staff, and my daughter. I’ve also had serious issues with work and had to drop everything and run to meetings to defend my position, trying to convince a room of superiors that “Of course, I’m healthy enough to be there every single day,” without being healthy enough to even sit through the meeting.

This is a familiar dance. Every day that passes I feel as though I lose more to this disease. I’ve had a grey week. I’ve spent hours silently looking at my daughter and wondered why I try to fight. Why I take meds, go to appointments, have tests when losing this battle isn’t up for debate; it is the only endgame. And it often feels that way, like there is little point in trying if all there is to be gained is momentary sparkles of a life I can almost touch, but never have. I’m also tired. Tired of fighting for everything, day in and day out. Tired of hiding problems. Tired of seeing what those problems do to people I love and who love me. So I sat and considered my options, whilst sinking into a dark place. I thought of stopping all treatments, all appointments, all tests. I even, momentarily, thought of leaving the house to unburden my family.

And then I remembered this is a familiar dance. I’ve been here before, come out the other side, and lived to tell the tale. This disease may have been gaining ground, but I’ve won every single battle that matters so far, and have survived and recovered from encephalitis, strokes, anaphylaxes, infections, endless blood clots, tons of experimental meds and thousands of procedures. And I have become wiser for it.

Regardless of the level of difficulty each day brings and whether the difficulties are at times insurmountable, I “get” to have new days, too. I turned 30 this year, which is a milestone no one thought I’d live long enough to see. I have a daughter who survived an unlikely pregnancy and delivery and is the happiest little girl I know. I have a job, a home, friends, a family. And I’ll be damned if I don’t put one foot in front of another and fight for more days for as long as I have the privilege and ability to fight.

So it has been difficult. It will continue to be difficult. But I’m gearing up for battle — bacteria, auto-antibodies and errant b-cells beware!

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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5 Things My Chronic Illness Taught Me About True Friendship

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For a lot of people, almost as soon as they’re diagnosed with a chronic or disabling illness, the majority of their “friends” disappear. Which, in turn, makes it seem even more overwhelming because really, social support is huge.

I’ve been chronically ill for seven years now and it’s taught me a lot. This is what it has taught me about friendship.

1. The ones that left were never there.

Two “best friends” completely bailed on me and several other “friends” did the same. For a long time I didn’t have many friends at all. Now I have one best friend and I’m confident she will never abandon me like that. Because the ones that left weren’t there for me — they were my “friend” for them. They were “friends” because it was of benefit to them in some way. But they didn’t truly care about me and when I was hurting, they were never there for me. Knowing the difference helps me know now who my true friends are.

2. They don’t have to completely understand. 

A lot of friendships are started by shared interests and experiences. But life with a chronic illness isn’t something to which any stranger on the street can relate. I don’t know of a single friend of mine that fully understands the day-to-day chaos I live. But I do have friends. I do have friendships. I have true friends and true friendships and I have friends that care about me because of who I am as a person, completely regardless of how I’m feeling.

3. The ones that stay are the ones you’re stuck with.

My best friend knows almost everything there is to know about my condition and my life that anyone could possibly know without living it themselves. She doesn’t care that I have a bad day sometimes and I’m not up for socializing. She knows it’s not personal. The ones that know almost everything hang around even if they do know everything, so when you find one that you can truly trust, hang on to them. Because they’re some of the best people life has to offer.

text messages on iPhone about being strong
Text messages from Christa’s best friend.

4. There’s no such thing as a “normal” friendship. 

I have friends I can talk to for hours on end, but we couldn’t get through a simple card game (because we’d get distracted and talk). I have friends I can just sit with and we don’t have to be doing anything at all because we know we’re there for each other as we sit and think. I have friends I could play cards with all day, but a 15-minute conversation seems to drag out forever with the intense awkwardness. I have friends I can’t sit still with. I have friends I dance with. I have friends I laugh with. I have friends I cry with. I have friends I pray with. They’re all true friends. Because true friendship doesn’t fit in a box.

5. It’s OK to not be OK. 

You don’t need to constantly act OK with your true friends because they see right through it anyway and they still love you regardless. They will be with you every step of the way.

So, if you’re someone who is chronically ill and you’re reading this because you don’t know how to have friendship, no matter what, don’t give up on true friends. Because I promise they’re out there.

If you’re that person who is a friend to someone that is chronically ill, thank you. Just keep doing what you’re doing, because the fact that you’re still around means you’re doing pretty well.

two teenage girl friends smiling
Christa (left) and her friend.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

*Sign up for our Chronic Illness Newsletter*

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How I Really Look as a Chronically Ill Mom Before You See 'Fake Me'

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Can we be real for about two minutes? That’s it. Just two. Then we can all go back to our perfect lives.

This is what I look like when I wake up.

woman with messy hair after just waking up
Jena just after she woke up.

See that hair? It deserves its own zip code! With the chest port, I haven’t mastered the art of keeping it dry while washing my hair, so my saintly husband gets stuck scrubbing that mane a couple times a week.

And I think men attack hair differently than women. Because that’s what they do, they literally attack it. Whereas we love it, wash it, condition it, comb it, put crap on top of crap on it to make it look civilized, men just attack the bejesus out of it. I think that’s their goal. To get the dirt out of the hair. Period.

So this is how I wake up after a good scrubbing. Gosh, I’m loved.

It takes me a while to talk myself into getting out of bed. Yes, it requires a mental pep talk. Jena, you have things to do. No, nothing matters. Get your butt up! But it will hurt if I move. You have to try. Why? Because you have kids who need a mom. Ugh! You’re right.

The struggle is real, folks. Every. Single. Day.

I get up. I pee. I weigh myself. I sigh. I lay out my IV antibiotic.

I make breakfast, which looks like this.

plate divided into three sections of fruit, eggs and toast
Jena’s breakfast of fruit, toast and eggs.

Please note this is not the breakfast of syrupy pancakes I’d prefer.

Now that I have enough in my body to prevent nausea, I take these.

clear box filed with pill bottles
Jena’s medicine.

Then I hook myself up to this, which lasts about 30 minutes.

woman with chest port holding bottle of medication
Jena and her medication.

At this point, it’s close to noon. My daughter Izzi has Kindergym at 1:30 p.m. today, and I need to move faster.

I throw on a bunch of this.

makeup supplies piled on flowered surface
Jena’s makeup.

I use my straightener.

Is there a more magical device?

I take pain medicine. I dress in layers.

And eventually, I leave my house looking like this.

woman wearing makeup after getting ready in the morning
Jena after getting ready to go out.

This is the fake me. The hair-colored, contact-wearing, chest port packing, breast reconstructed, dentally-modified me. Heck, even my smile is fake. I’m not happy. I’m just really, really tired, and I want to curl back up in my bed.

But I go. And guess what! All afternoon, this fake me is peppered with the loveliest compliments. You look great! Wow, are you feeling better? 

And from a momma of three energetic little boys, one under 1, “Jena, I just have to say you look beautiful.”

Whoa, pretty momma. Let’s be real for a minute. So I show her the picture from that morning with my real hair and my real wrinkles and my real dark circles.

Social media makes mothering look easy. We see photos of beautifully manicured moms going to yoga or fixing yet another organic meal off of Pinterest, and we doubt ourselves. We worry that we are not doing this whole parenting thing right. 

We aren’t strict enough, creative enough, happy enough, energetic enough, organized enough, pretty enough, good enough.

But here’s the truth, pretty momma. If we can get our kids to eat one vegetable a day, avoid the ER, and bathe with soap, we should mark the day as a success! Oh, and praise be to God if we actually get through the whole homework hour without losing our sh*t.

Seriously. Was math that hard when I was in fifth grade?

The point is it took me five hours to look presentable. Five hours! So, pretty momma who looks exhausted and overwhelmed, it’s OK. If we’re honest, most of the time, we are all exhausted and overwhelmed. We just want our kids to grow up to be good, happy people. And much of this whole parenting thing is a crapshoot, anyway.

So to make the load a little lighter, we would like a naptime for ourselves and snack time that includes alcohol and chocolate, without calories, of course.

And friends who are real with us, who tell us this is hard, but it’s also OK.

On this day I got my kid to Kindergym, and I ooohhed and aaahhed as she bounced and tumbled and danced. I felt like crap, but she didn’t know that.  And as we left, she automatically held my hand, jumping her way to the vehicle the way 5-year-olds do, and announced, “You’re the best momma!”

And that was all that mattered at that moment.

Be real. Be you. Be Mom.

And it will all be OK in the end.

Follow this journey on A Broken Crayon.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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When I See Competition and Jealousy in the Online Chronic Illness Community

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Jealousy is one of those ugly emotions we don’t like to think we are capable of feeling. But everyone feels jealous occasionally — jealous of someone’s great hair, jealous of their car, their lifestyle, their 2.5 beautiful kids. It’s natural, and as long as we don’t treat others badly due to our jealous tendencies, I think it’s harmless.

I think the problems start when we act upon our jealousies and say or do things to hurt other people, especially our friends and family. In this day and age, it’s become so easy to act upon our feelings, even anonymously, due to social media.

Social media seems to be the number-one way the chronically ill interact with each other. Understandable, considering the chronically ill are sometimes too sick to have much of a social life and may spend more time with their doctors than with friends.

My daughter, 21, is among them. She has been battling multiple illnesses that greatly reduced her social life for many years. Her family became her only social circle until she discovered the online chronic illness community.

There are so many different ways to connect with people online and the chronic illness community is no different. You can join groups, start groups, post photos, message, chat, tag, etc. And any one of these can introduce you to hundreds of people who are battling an illness just like you or your loved one. So many people who have their own sad story, their own heart-wrenching account, their own battles won and lost, their own wish to be accepted and belong.

Here begins the first stages of friendship, and sometimes, unfortunately, competition and jealousy. Don’t get me wrong — most of the people my daughter and I have met are wonderful, tender-hearted, loyal, uplifting people who have become our dearest friends. But for some (and this was very hard for me to believe in the beginning of our illness journey) I think there is a need to not just be sick but be more sick than their friends. And if they can’t be more sick, then they might accuse others of faking their illness or using their illness to get sympathy. This is where I feel jealousy can start to take over and they may fall into the trap of becoming envious of those they interact with.

woman smiling with her daughter wearing a red hat and face mask
Leslie and her daughter.

If someone’s friends have more friends than them, more “likes” on their post or photo, or maybe more sympathetic comments about their illness, I think this can lead to some insecurity about how sick they are, how many medications they take or how many ER trips they made last month. I’ve seen this followed by arguments, accusations and friends being forced to take sides. It’s a lose-lose situation. No one ever looks good trying to tear someone else down.

My daughter and I have been extremely lucky. We have both met and befriended some of the most amazing people in the chronic illness community. Yes, we’ve had our encounters with some who wished to bring us down. But that’s the beauty of social media — you can easily choose to leave a group, unfollow a page, or even turn the other cheek and respond in a way that’s positive.

I’ve always told my daughter, “Every person’s pain and suffering is relative. Who are we to decide whose illness is worse or whose pain is greater?” Jealousy won’t answer those questions for us. It just works to divide a community that should focus on holding each other up. Because in the end, no one understands us more than those who are leading a similar life with chronic illness.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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