Dear Chronic Illness,

We’ve not known each other long, dear, but you’ve insinuated yourself into every aspect of my life. In fact, there is not a part of my life that you’ve not touched, and I thought it was time I finally told you how I really feel about you.

My primary diagnoses are rheumatoid arthritis and narcolepsy, with secondary interstitial cystitis and irritable bowel syndrome. Our running joke is: One more diagnosis, and I’ll have my own alphabet soup (RA, IC, IBS)! I also experience depression, PTSD and anxiety, which have worsened since I started “getting sick.”

I resented you when you first showed up, chronic illness. And honestly? There are still times where I resent your presence and everything it means. I hate all the things you’ve stolen from me, but more importantly, all the happiness I’ve let you take. I despise the impact you’ve had on me, my relationships and my body.



Your arrival has changed my life in many positive ways, and for that, I must thank you. You’ve strengthened my relationship with my fiance, even while you’ve made life harder. Without your pushing your way into my life, I wouldn’t have found how strong I truly can be. I wouldn’t have met some of the most precious people I’ve ever known. I wouldn’t have followed my dreams.

I do hate how your presence means a revolving schedule of doctor appointments, medications, and sleepless nights. I don’t like our days spent curled up on the couch together or the times you keep me from my favorite activities.

But I have to admit I like how life has slowed down for me since you’ve been here. I am grateful for your forcing me to stop and smell the roses. Without you, I’d probably still be rushing about; now I know how to appreciate the quieter pace. When you came along and showed me how short and hard life can be, you taught me to treat every day as a gift, and I’ve tried very hard to do that.

Overall, I suppose I’m grateful for all you’ve taught me, though I wouldn’t say no if you wanted to take your leave. You’ve made me stronger and more compassionate, even while your pain feels as though it’s tearing me apart. The conundrum that is our relationship is both a blessing and a curse. And I suppose that’s the way it must be.

In closing, I must thank you for changing my life. For all the good, and yes, the bad as well. I suppose you’re now very much a part of me, and I don’t quite know what I’d do without you.

Keep on living, I guess.

A version of this post originally appeared on Becomin Neurotic.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or illness. 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 “Share Your Story” page for more about our submission guidelines.

Lead photo source: Thinkstock Images


“Let’s hope it’s broken.” This strange response to my swollen hand left my mom and me confused. Granted, we were sitting in the doctor’s office of a well-respected hand surgeon. Could it be he was excited about the opportunity of doing surgery? But then why did he look so concerned? He really wanted my hand to be broken.

After a round of x-rays and a short wait, the doctor came back and recommended we see a rheumatologist. It was only a matter of time until we understood why he looked so anxious. Juvenile rheumatoid arthritis (JRA, also known as juvenile idiopathic arthritis) is something I wouldn’t wish on my enemy, and yet it has helped make me a stronger, deeper person than I would have been without it.

JRA is a form of rheumatoid arthritis (RA). The difference is that JRA occurs in babies, children and young adults, hence the name. The disease distorts your body’s thinking so that your immune system mistakenly identifies its own healthy cells and tissues as foreign and attacks those healthy cells and tissues that are often around the joints. Sometimes people outgrow JRA in their late teens, but that was not my case. I have now had it for over three decades. During that time, I’ve learned the value of adapting, encouraging, loving, risking, deep breathing and character.

I have gone through many surgeries (joint replacements and removals), changes of medications, joint drainings and the ever-appreciated cortisone and Kenalog (aka “feel good”) shots. This all sounds a bit daunting, but luckily I was raised by parents who always reminded me that “I am not an arthritic person. Rather, I am a person who happens to have arthritis.” This philosophy is a game-changer.

People are good at bemoaning a chronic illness, and I have done my fair share. I just try to do it privately. I have come to realize that being chronically ill is, in a sense, a blessing. This is a thinking that takes more effort on certain days, but its truth is always just a mind shift away and that is empowering with a disease that is so unpredictable.

I made it through elementary school without JRA, so I do realize what I am missing in a “normal” body, and I long for one every day. But that is not an option, so I move forward. Although choice #1 is no longer available, I have come to appreciate my reality. Living with RA (I no longer qualify for the “J” part, I’m told, as I am not a juvenile any longer — at least not age-wise), I have found strength in myself and my loved ones that buoys me.

When I was young and newly diagnosed, my nurse would tell me to imagine the place I most liked to be when I was about to have a joint draining to help prevent me from hyperventilating. I often still use that tool today when I have a flare or a particularly painful day. The amazing thing is now when I face such obstacles, I imagine being right where I am at this moment, surrounded by my husband who loves me, my dad who cheers for me, siblings who support me, friends who encourage me and the memory of my mom who walked alongside me from the start and imparted her lasting bravery within me.

Although I still may walk a bit too nervously into the future, I can now see some of the blessings JRA has afforded me. I just may need to open my eyes a little wider sometimes to catch that view.

Sharon Laine the mighty

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? 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 “Share Your Story” page for more about our submission guidelines.

For Mark Seymour, photography is more than just a profession or passion. It helped him cope with his father’s last few years of life.

When his dad, Ronnie Seymour, was diagnosed with Alzheimer’s disease five years ago, what had begun as Mark Seymour photographing his parents’ daily lives turned into a way to face and document his father’s experience with dementia. The result was a four-year photo series, “Remember Me,” (below), as well as a short film, “A Portrait of Ronnie.”

“[It was]… a difficult and painful project but something I felt compelled to do, bringing meaning not just to us as a family but so I could take something positive from this situation and use it to help raise the awareness of… what dementia does to a person and their family,” Seymour wrote on his Kickstarter campaign page.

Ronnie and his wife Winnie in February 2014
Ronnie playing the harmonica in May 2014
Ronnie a month before he passed away

Ronnie Seymour passed away in March 2015, but his legacy now lives on through his son’s black and white photographs. The photos (full series below) show Seymour’s disease’s progression, from his diagnosis to moving into a local care home, to his death this year.

“Taking the pictures was relatively easy,” Mark Seymour told The Mighty in an email. “The tears came at the editing stage, when confronted by [the photos] on my screen.”

Seymour’s photographs will be displayed at an exhibition in London this September that will coincide with World Alzheimer’s Month. Afterwards, he hopes to take his exhibition to local and regional areas. He told The Mighty he wants to give people “an awareness of what Alzheimer’s is really like and what stages the patient goes through.”

To see the story in pictures watch the video below:


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A friend recently asked me, “Lisa, how do you want people to approach the fact that you look different? What exactly would you like people to do or say when they meet you and are interested in learning about your disease (scleroderma)?” I’ve gotta say, it’s a stumper! Humans are curious creatures. It’s natural and healthy to wonder why people vary from the norm either in appearance or behavior.

I will attempt to answer this tricky question, but before I do, I must first give you a sampling of how I do not want people to approach the topic with me.

1. Blurting out, “What’s wrong with you?” or spontaneously asking, “Why are you sooooo skinny?”

Don’t go up to strangers and ask them personal questions about their appearance. It’s weird when some random patron at the grocery store stares at my splotchy, mangled hands as we examine the produce and says, “What’s wrong with your hands?” This person is not invested in my well-being. Their inquiry is blunt and off-putting. My fantasy response is, “I’m allergic to weird strangers who ask me intrusive questions.”

2. Exclaiming, “Congratulations! Do you know if you’re having a boy or a girl?” 

I have super skinny arms and legs but a disproportionally large mid-section. Possible contributing factors are: the aftermath of eight major abdominal surgeries, distention caused by scleroderma, my ostomy bag inflating, or my affinity for donuts and total lack of willpower.

3. Asking, “Are you a witch?”

4. Pretending to not notice I look different when meeting me, but determined not to pursue a friendship with me because I’m weird-looking.

It’s much easier to make a list of what not-to-do than to advise on the best way to handle this delicate situation. Through deep consideration, I devised the following guidelines:

1. Get to know me first.

If you meet someone in a social situation and get to know them as a person, then I think it is perfectly normal to ask them a few questions about his/her altered appearance. I recommend framing your conversation in the context of genuinely wanting to get to know them better.

2. Ease the blow.

It’s best to compliment someone first by saying, “You have gorgeous eyes, but what’s wrong with the rest of your face?” You’ve gotta soften the blow a little.

3. If I give you a clue, take it.

I try to give people overt clues about my disease. This saves us both a lot of awkward dancing. I have a magnet on my car that says “Cure Scleroderma.” When I go swimming, I always wear a Scleroderma Walk tee-shirt over my bathing suit. The silver lining in not being able to wear a cute bikini is that my tee shirts allow me to raise awareness for scleroderma, conceal my purple and red spots, allow people who meet me to immediately know what I have and go home and Google it if they so desire.

4. Emulate this third-grader.

I can think of no better way to describe how to approach me about my appearance than an interaction I had with a third-grader just this past fall. I had been working with this boy in a small group for several weeks. While dismissing the group, we had the following brief interaction:

Third-grader: Mrs. H, you’re beautiful! I mean really really beautiful! Honestly, you’re so beautiful, but I’ve been wondering, why are your wrists sooooo skinny?

Me: That’s a great question and I must tell you I am so impressed with the way you asked it! I know I look different, right? So here’s the deal: I have a problem with my skin that makes it much tighter than most people’s. That’s why my wrists look so skinny. My skin doesn’t stretch as much as it should. Does that make sense?

Third-grader: Yes. Does it hurt?

Me: Sometimes, but I’m really used to it so it doesn’t bother me so much.

Third-grader:  Oh. Like I said, you are really really beautiful, Mrs. H.

Mind blown! This third-grader just masterfully steered his way through a complicated question most adults are uncomfortable asking. He followed my prescribed guidelines to perfection:

-He waited several weeks and got to know me before asking me a personal question.

-He expressed interest in my well-being.

I must admit that I still don’t openly discuss my altered appearance with my kiddos. When a child asks, I answer with honesty, but I don’t bring it up. If I were truly fearless, I would ask my district if they would allow me to lead an assembly on “Embracing Our Differences.” I would boldly get up in front of the 600 students in my school and share my experiences in an age-appropriate presentation. I truly believe this would help our kids navigate these difficult issues that many of them face. Most cruel behavior stems from misunderstanding the differences that exist between us.

I would like all you readers out there to weigh in on this. I especially would love to hear from fellow teachers, former students and parents. Please take a moment to make a comment below.

There are few times in life that I can honestly say I nearly lost all faith. Faith in everything — time, logic, even God. Having no faith is like having no air in your lungs, no blood in your body, no place to go, no reason for anything, simply existing without purpose. That is what it was like for me the moment a doctor told me in all reality, unless some sort of catastrophic accident or miracle occurred, we would outlive our daughter.

As the air began to refill the room a bit, I glanced over at our then-5-year-old daughter.  She was sleeping on the examination table. We had driven nearly a half-day’s drive to get to see her specialist, and despite sleeping in the hotel for a full night’s rest, she was still simply exhausted.  She had ostomy collection bags hanging from different connections in her stomach collecting the drainage her stomach and intestines could no longer process. She had IV supplements pumping into her permanently tunneled central line to give her the nutrition her digestive tract could no longer maintain.

She was frail, her stomach was protruded, she was pale, and despite the life-threatening sepsis she had just made it through; the chronic liver inflammation she was battling; the bone marrow suppression; the seizures; and difficult-to-treat infections ravishing her body and making her weak, it was truly the first time I saw her as ill as the doctor had just described her. I wanted to be sick.

“How can you be sure?”

“When you have been doing this as long as I have, you just know. No one’s body is meant to carry on like this for the long haul,” she said as empathetically as she possibly could.

I choked a little, my mouth without any saliva at all. “How long?”

“It’s hard to say. If she continues down the path she is on now, as rapidly as she is, maybe one to two years at best.” She looked at me for a moment longer, glanced again at my sweet sleeping girl, and then looked away.

No, no, I thought to myself, There must be some mistake. It just cannot be my little girl we are talking about. The entire conversation felt surreal. Our doctors at home constantly tried to sugarcoat everything. They were always giving us the old “just give her some time” speech. I was so jumbled up; I didn’t know what to believe. Then it struck me. It hit me so hard I nearly crumbled out of my seat — how quickly she had gone from a nearly asymptomatic little girl to a child who needed support for nearly every organ in the short matter of only two years.  How could this be happening?

I left that day not with a plan to treat or fix my child, but with a paper full of suggestions and accommodations on how to best make her comfortable. The shift in care left me feeling defeated. She slept the whole way back to the hotel while I cried.

The world isn’t supposed to work that way; you aren’t supposed to outlive your children. You give birth, you raise them, you have grandkids, you help raise them, you get old, your kids help care for you, and sadly one day they bury you and mourn for you, but that is the way this world is supposed to work.  You aren’t supposed to bury your babies.

It has been three years since that fateful appointment, and it took time, but I have regained my faith in time, logic and even God, not just because my daughter has lived, but because I need my faith to keep me sailing through this life we’re leading. I have watched too many friends of mine, whose children also have mitochondrial disease, bury their babies outside the proper order of time. I have fought with the unfairness and illogical nature that comes with that tragedy. It gouges out your heart and makes your soul bleed in a way I can never fully explain.

I can’t help at times to wonder when my little girl will no longer have the strength to fight, but I do my damndest not to think that way, not to live that way, because the only way to keep the life in her years is to allow her to live them, and that is what we intend to do. Every morning when we wake, we give her life again, to the fullest, until the end.

A version of this post originally appeared on Learning to Let Go; A Different Dream for Us.

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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While it’s lovely to see so many diseases gaining awareness in the movies and television lately, there’s a downside to all this attention for the people who actually have serious illnesses.

Fans of these movies and TV shows appear to be glamorizing this lifestyle, yearning for an existence they truly know nothing about. You’ll see this unfortunate longing on social media sites such as Instagram, where users will steal photos of real patients and claim them as their own for attention, for likes or to gain followers. I’ve even come across individuals who will “dress up” with fake medical devices to look like their favorite characters at the premiere of popular movies.

You can see why this media depiction can lead to tremendous misconceptions for the general public regarding illnesses and cause concern for those of us who actually deal with diseases day in and day out. More than once I’ve had someone ask me if my medical devices were real. This question always shocks me. Why would anyone fake an illness? Why would anyone tote a heavy oxygen tank without actually needing one? Why would anyone want this life we are forced to endure?

All of this truly hit home for me on a particular sunny day in June when I decided to head to the local water front. As I walked on the crowded pier with my oxygen tank, feeding tube equipment and short brown hair, a young woman pointed and yelled in my direction, “Look! It’s Hazel Grace!” She was referring to Hazel Grace Lancaster, a fictional character from the popular book/movie “The Fault in Our Stars” who has a serious illness requiring supplemental oxygen. (Hazel is loosely based on an actual patient named Esther Earl, a personal friend of the author John Green, according to Hollywood Life.) While this young woman didn’t mean any ill intent, it still stung quite awfully.

I’m not an actress, and I’m not a character in a movie; I’m an actual serious illness patient just trying to live her life. My medical issues don’t halt when a director yells cut, and I certainly don’t return home a healthy individual free of medical devices when the work day is through. I must suffer each day as my body slowly deteriorates from a disease I never asked for.

Please be respectful when you see someone suffering an illness in public, especially if they have obvious medical apparatuses. We don’t tote these heavy accessories for attention but to sustain our lives. We want nothing more than to fade into the background and enjoy the sunny day with our families just like everyone else on that pier.

Chanel White the mighty

Read more about Chanel White’s journey on A Day in the Life of a Tube Fed Wife.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. 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 “Share Your Story” page for more about our submission guidelines.

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