Angela's daughter smiling before surgery

When I Have to Answer Hurtful Questions About My Daughter's Rare Disease

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Some ask me on occasion, why does you daughter walk that way? Is her disease contagious? What are “they” going to do about her condition? Some people will stare in public and whisper to one another and point. Some have bullied my child and some have been her greatest supporters. Many will see my daughter with a smile on her face but don’t see what goes on behind closed doors. They don’t see the emotional side. The side that cries at night and says she is tired of being in pain. The side that wishes she wouldn’t walk different and have to have multiple surgeries. The side that cries before getting put to sleep before being operated on. Only being able to do physical activities “as tolerated.” Wishing she can participate in cheerleading or gymnastics without having to worry about breaking her legs. Having more scars compared to the scars I’ve had in my whole lifetime growing up as a child. The side that asks, “Mommy why me?”

No, Blount’s disease is not contagious. No, we don’t know what will happen in the future when she becomes an adult. Blount’s disease is a rare bone disease that does not have enough research or a foundation supporting this condition. This is a disease that affects under 200,000 kids in the United States. It can lead to deformity, arthritis, or osteoporosis in the future. This is a disease that needs more awareness.

There is no disease so rare that it does not deserve attention. Without research there is no hope. Some people may get tired of my constant advocacy posts and unfollow my site. But that’s OK. I’m not raising awareness so people can feel sorry for us. I’m raising awareness because I have a daughter who is tired of being operated on and I’m a parent who is tired of not getting answers. We shouldn’t have to fight this journey alone. And I never know who may need my raging courage for setting the world on fire with my truth. So I will continue to raise awareness for my daughter and others who are battling Blount’s. I will continue to advocate until there is a change. These children are not their illness. Their illness doesn’t define them. Their strength and courage does.

I believe the worst thing about a disability is that people see it before they see you. It is up to us to make our children’s voices heard for Blount’s. I have slept in a hospital chair, skipped meals and cried from fear and joy. I have become an expert on my child’s condition. I am a strong advocate and I have had to make life changing decisions. I am the parent of a medically complex warrior. And I will continue to raise awareness for my child because Blount’s disease matters just as much as my child does.

Follow this journey on Anneliese vs Blounts Disease

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

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Woman With Invisible Illnesses's Disability Claim Was Denied Because of Photos She Posted Online

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What does being disabled look like when your chronic condition is an invisible illness?

According to a Tumblr post from Kayla Barry, a New York City-based comedian, if you want your disability to be taken seriously, then you shouldn’t look awake, smiling or alert.

Barry, known on Tumblr as Fibro-larious, shared a series of photos on Wednesday after her request for long-term disability was denied. Barry lives with chronic fatigue syndrome (CFS) and fibromyalgia – conditions that can cause widespread chronic pain and extreme exhaustion.

The post begins with a snapshot of the document she received denying her disability claim. The form asks, “Are the claimant’s self-reported symptoms and complaints consistent with the medical documentation and other information in the claim file regarding the claimant’s activity?”

The answer, pointing to her Twitter profile, states:

The material viewed show photographs and some activities that were posted between 9/8/14 and 7/30/15. There is nothing in the posts that identify actually when the photos were taken. However, the person depicted in most of these posts appears to be a young woman who is engaged in life activities, awake, smiling and alert. They do not appear to depict an individual who looks chronically ill.

Disability Denial

“The physician who was hired to make the decision on my LTD benefit appeal denied me based on “facts” like this one,” Barry writes in her post. Below the form, Barry shares photos of herself “engaged in life activities.”

Kayla Barry

“The few photos that “appear to be a young woman who is engaged in life activities” and “awake, smiling and alert” are FAKE,” she writes. “People always use social media to show the BEST moments from their lives, even if they aren’t the whole truth.”

“They’re called invisible illnesses for a reason,” she says. “People with chronic illnesses can look completely normal. They are hidden in plain sight.”

Barry then points out what she doesn’t share, the toll her invisible illnesses take after she gets to be “happy for a day.”

“I don’t share the three days I have to sleep to recover from one stand-up comedy set. I don’t share the intense pain my body is in after walking around in Central Park for a day.”

Barry updated her Tumblr later in the day to say she is working with a social worker on her disability claim, and has an appointment with a lawyer to discuss her claim.

You can read her full post below:

http://fibro-larious.tumblr.com/post/145948678177/the-physician-who-was-hired-to-make-the-decision

The physician who was hired to make the decision on my LTD benefit appeal denied me based on “facts” like this one. The twitter account he referred to as evidence that I’m lying about my illness is hardly active. Also, the majority of the posts are:

• Photos of pets
• Photos from Timehop (aka from years ago)
• Photos of things around my house

The few photos that “appear to be a young woman who is engaged in life activities” and “awake, smiling and alert” are FAKE. People always use social media to show the BEST moments from their lives, even if they aren’t the whole truth. I’ve had some great experiences in New York, so of course I am going to brag about them! What I don’t share on social media are the consequences of being happy for a day. I don’t share the three days I have to sleep to recover from one stand-up comedy set. I don’t share the intense pain my body is in after walking around in Central Park for a day.

They’re called invisible illnesses for a reason. People with chronic illnesses can look completely normal. They are hidden in plain sight.

The Mighty reached out to Kayla Barry for comment and has yet to hear back. 

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To My Future Partner: What You Need to Know About My Life With ME/CFS

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To my future partner,

You don’t know me yet, but when we meet my illness is unlikely to be apparent to you at first. You’ll meet a happy, relaxed person who loves to connect with other people. There might be little clues if you know how to look for them. You might find it strange that I don’t spend long in social situations. If we were to meet at a party I’ll almost certainly be the first to leave.

It will be difficult for me to tell you about the fact that I have myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I want you to see me in the positive light that I see myself and I fear that you will pity me or even judge me as somehow being “less whole” and less worthy of your attention. But I will have to tell you, because although I have created a dream life for myself and am extremely skilled at looking after myself, this requires a lot of daily care and attention. Without respecting the limits to my energy, without my rests, pacing and quiet times, without my yoga, tai chi and meditation or without my careful attention to what I eat, I would not be able to do all that I now do. I would not be able to feel as good as I now do. I know I can’t afford to push my boundaries or be as spontaneous as I would love to be. And if you’re going to spend any length of time with me, I’m going to need you to accept and consider my need to carefully plan my day and manage my energy.

I’ve been looking after myself extremely well for years. I don’t need a caretaker, but I do need a partner who cares enough to consider my needs. Getting the best out of my life takes a lot of time and work and if you want to share that life, you’ll have to be prepared for me to spend a lot of time doing that work. But I also have a great deal of love to give, and I can’t wait for the opportunity to spend my disposable time and energy loving you!

I want you to recognize my amazing achievements: I’ve overcome the challenges that I have faced. I’ve learned to make a great life for myself despite chronic illness. I’ve learned how to be happy and how to spread that happiness to others. From time to time I will suffer. When I do, I may need a little empathic understanding, but I won’t want you to suffer on my behalf. I will want you to have confidence that I can get through this, and to trust as I do that I will soon come out on the other side. This is important — I want someone to care about me, but many people make the mistake of believing my suffering is awful or intolerable and don’t respect the skills and abilities I have developed to help minimize, manage and tolerate my suffering.

Although I am a warrior and I want you to respect that, more than anything I want you to see the “me” that has nothing to do with the illness. I guess I am most like myself when I spend time with friends and family who have known me since I was well, but you will not have enjoyed that privilege and I fear that will make it harder for you to see me. I’d love to not have to tell you for a while; I’d love to somehow be able to get to know you without the shadow of this illness hanging over us. But I also believe in honesty and I will need to set my boundaries. So when I tell you, please don’t let my illness become a blindfold. Please choose to see the whole and beautiful person that is me.

In loving anticipation,

Julie

Follow this journey of living with chronic illness at ME/CFS Self-Help Guru.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

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My 31-Year Journey to a Babesiosis Diagnosis

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I always say to others with a chronic illness that getting diagnosed is half the battle. But what if that battle takes 31 years? What does it take to motivate yourself to seek out a diagnosis for most of your life, and is it worth it? I believe the answer to that is yes!

I grew up in a suburb of Chicago, and when I was 16, I worked as a camp counselor across the street from the Sand Ridge Nature Center. It was a forest preserve we would take our campers to a few times a week, and we spent the rest of the time at our day camp site.

At the end of that summer, I was entering my senior year of high school. And that September is when I started noticing a slowly growing number of symptoms and deficits that no one else around me seemed to be experiencing.

I could barely get up in the morning or stay awake in my 1 p.m. class. I had random stabbing pain in my shoulders, and I could barely walk home after school. I would fall asleep as soon as I got home. I couldn’t work and go to school. I got lost driving to places I had known all my life.

In college, I could barely stay awake during my first and last classes. Every time I went to the library to read, I would read the same paragraph over and over and have to fight to stay awake. Each afternoon, I would take a nap before dinner.

After graduating and moving to Chicago to first work in journalism, then advertising, and finally broadcasting, these symptoms were gaining strength and making it nearly impossible to work and support myself, but I had to keep going to pay my rent.

I was in my 20s when I finally started seeing a variety of doctors for my symptoms. Every test was negative, which was disappointing because you want to know what is wrong with you. The problem was, I had so many random symptoms by then — including weakness, fatigue, aching pain all over, headaches — that nobody could apply them to one condition.

I kept looking for answers. In my 30s, all my tests came back negative. In my 40s, I was married and living in Connecticut. I saw every kind of doctor in Connecticut and New York I could think of, and all my tests came back negative. I had been diagnosed with fibromyalgia in my late 30s and that was fine for a few years, but it didn’t explain why I felt like I was dying and why I would sometimes sleep for a month. 

A rheumatologist at NYU Medical Center in Manhattan said you may have something they haven’t discovered yet — and may not in my lifetime. He sent me across the street to the Hospital for Orthopedic and Joint Diseases for physical and occupational therapy, even though I had no diagnosis.

One evening in the spring of 2007, I was standing in the upstairs office of my townhouse and thinking to myself — what was I doing right before I got sick in the fall of 1976? What was I doing that summer? And it came to me. I was a camp counselor that July and August. I wanted to make sure I had that right, so I turned around and went to an expandable file where I had kept one W-2 from every job I’d ever had. And there it was at the bottom of the paper-clipped stack. The first job I’d ever had was as a day camp counselor in South Holland, Illinois in the summer of 1976, just one month before I got sick.

There was one type of doctor I had not been to yet, so I made an appointment to see an infectious disease doctor less than one mile from my house. By this time I was having all my symptoms, plus migraines at least five out of every seven days. In other words, I spent days on end in bed, weak and in excruciating pain. 

At my appointment, I told the doctor my symptoms and that I had been a camp counselor before I got sick. Then I looked her straight in the eye and said the thing that made all my previous doctors so uncomfortable — I said, “There is something wrong with my brain.”

The doctor got together with my neurologist down the street I had been seeing for pain management, and together they ran about 20 tests. And for the very first time in 31 years, one of those 20 tests came back positive. I was positive for Babesia microti, which is spread by deer ticks. Did the doctor treat me? Yes. Did I get better? Yes! Am I cured? Nope. I have chronic babesiosis (Babesia), which has symptoms similar to malaria.

Like I said, getting diagnosed is half the battle. It changed my life. I responded to treatment. The point is that I never gave up searching for a diagnosis, because regardless of what everyone else said — I knew there was something terribly wrong with me. And I was right.

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

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The Surprise Gift Multiple Sclerosis Gave Me

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As the result of an uninspired performance in high school, I had very few exemplary academic achievements. In my sophomore year, I did take a standardized accounting test and scored among the highest in our school district. It was as much a surprise to my teacher as it was to me!

Performing so well on that test was a pivotal moment in my life because it prompted me to study accounting at college. My undergraduate degree led me to my first job where, after meeting my wife, the next chapter of my life began.

However, not long ago, a memory of my senior year of high school popped into my head. It was a surprising moment from government class.

It was for an writing assignments titled, “What does government mean to you?” I can’t say I remember what I wrote, although I do recall having a great time completing it. But it was the reaction of my teacher that shocked me.

He asked to speak with me as class was ending. I still remember the snickers from my classmates who thought I had gotten into trouble (I figured I was, too!)

Instead, my teacher told me he thought my paper was one of the best things he’s read in a really long time and that I should be in his Advanced Placement (AP) class – all just based on what I had written.

Although I was surprised and grateful, I was also just 16 years old, so it mostly went in one ear and out the other. And nothing more came of that moment.

Last summer, a good high school friend of mine asked if he could share my writing about living with multiple sclerosis with his students. He was inspired by my work and wanted to incorporate some of my stories into his lesson plans on how to write with meaning and passion. Flattered, I agreed. A few days later, we spoke in more detail about his class, and during the conversation, he referenced our high school days and told me he was always in awe of my writing.

My friend, who teaches children every day (including a job at the Kahn Academy) and has also spent time on stage as a comedian, is an extremely talented communicator himself. So I was stunned to learn my writing motivated him to become a better writer.

We all have our dream jobs and not many of us get to actually live them. The examples are numerous: An aspiring musician who works an office job because he has a young family and bills to pay or the lawyer who’d rather own a bakery but doesn’t want to risk trading a stable job for a failed business.

Working in an office or arguing before a judge isn’t who they are, but for whatever reason, it’s the road they’ve found themselves on. Choices made when they are barely 18 — the college they study at or what field they major in — sends them in a direction that’s opposite of their passion.  But if a genie came along tomorrow and granted them the opportunity to change paths, they would instantly take it.

Everyone understands these types of scenarios, and perhaps a few of you are currently living one.

But what if I told you there might be something out there for you — a passion or talent — and you don’t even know what it is yet?

I would have never become a writer if I wasn’t diagnosed with multiple sclerosis. Even typing that, I have to take a moment to let those words sink in.

This other part of me — that a prior teacher had alluded to or a friend had admired me for — would still be hidden away and lost in the perpetual motion of everyday without MS.

Living with MS isn’t easy for me — there isn’t a day that goes by where I don’t encounter blurred vision, shooting pains, tingling sensations, numbness or fatigue. How can something so devastating to my health and personal life also be the inspiration behind what I’ve now become?

And so I wonder — is my situation unique? Or are many of us living our daily lives unaware that we are only scratching the surface of our potential, an undeveloped talent or unknown passion?

I don’t have the answer to these questions but I think it’s worth it to take a few moments to pause and reflect on it. While you’re taking a moment to smell the proverbial roses, close your eyes and remember who you were while dreaming about who you can become.

Let your internal compass lead the way.

Follow this journey on A Life Less Traveled.

Imagine someone Googling how to help you cope with your (or a loved one’s) diagnosis. Write the article you’d want them to find. If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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A Letter to Myself at the Beginning of My Journey With Crohn's

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Imagine cleaning your room one day to find a mysterious letter from your future self. Would you dare open it? Would you take your own advice? I’ve always wished “future me” would send me a quick note to encourage me in the right direction, warn me of heartbreak or confirm I made the right decision.

If you were given the chance to chat with the old you, would you? Would you warn them about that bad breakup? Admit their favorite jeans are a hideous excuse for pants?

In 2013, I would have given my right arm for a mysterious note from a future self. I had no idea my life would take an unexpected turn when I became seriously ill before being diagnosed with Crohn’s disease. I’ve heard nearly a million pieces of advice and suggestions from other chronic illness warriors, but I always wondered what I would tell me. Well, this week I sat down and figured out just what I would tell the 2013 version of me.

Hi Becki,

It’s 2016 me — well, you. Crazy, I know! Right now, you’re buckled in, and the biggest, scariest roller coaster of your life is about to take off. You’re going to scream, cry and laugh more than you can even believe. But don’t worry, I’m here to give you pointers on how to get through this ride in one piece — well, with most of your pieces.

As this year began, you started to experience some less-than-glamorous issues. The bathroom isn’t the most fun place to hang out, I know. It’s hard to explain why you’re constantly going. And the poor, poor person that has to use it after you? Bless their soul.

“It’s so embarrassing!” you say. Well, get used to it, Buttercup: this is the easy part. Now I know you think it’s just a little stress. It’s not! Go to the doctor ASAP! They’ve seen and heard worse. Be honest and ask for help. When you finally do get help, do some research on the tests they are going to run. I promise, they sound scarier than they actually are. Never, and I repeat, never eat your favorite food before a colonoscopy prep and, no matter how drugged up you are afterward, you still hate In-N-Out Burger.

And get used to people looking at your butt. Not like “Dang, those jeans look good”… more of “When did that hemorrhoid appear?” You’re going to get really used to your rear end being the piece of you everyone wants to see/scope/talk about. You’ll become shameless real quick and poop jokes suddenly become the funniest thing in the world.The author, Becki Parker.

You’ll meet more members of the medical profession than you’ll be able to remember. They all have different methods, but their goal should be the same: to help you heal and function to the best of your ability. You’ll meet nurses that love you and some that you wish took a different career path. If you feel like you’re being mistreated or your needs are not being met, leave. Now. Do your own research and interview a new doctor. Learn new adjectives for how your guts hurt. This will help doctors and nurses greatly. If something looks or feels off, tell someone. Go to the ER. Who cares if they saw you last week? It’s perfectly okay to go back and ask for help. Roughing it out does nothing but harm. The nurses will learn your name and your life story, and they’ll become some of your closest confidants. They’ll be able to help the doctors track how your disease is progressing. Even the doctors will become your close friends and visit you during your many hospital stays. Remember to be kind to these brave souls that not only work crazy hours, but put up with many cranky and sick people, all with a smile on their faces.

Get used to the taste of broth. And stop being a snob about Jell-O. Just suck it up and drink the damn food. Liquid diets are here to stay — deal with it. You won’t like many of the tests, foods, needles or being cooped up, but that’s life now.

You’ll see people you thought were your friends disappear. You’ll try and try to keep those relationships alive, but sometimes you have to learn when you stop CPR and call it. You’re 21 and you’ve little to nothing in common with them anymore. And that’s just fine. And if you have to cancel plans, that’s OK too. Don’t push yourself; if you do, you’ll pay the price later.

It’s normal to outgrow people. It’s normal for them to not understand or learn with you. Adapt to your situation and respectfully move on. Learn to adapt to your ever-changing scenario quickly. It’s no use fighting change. You’re never going to be “normal” or like the old you again.

And that’s the bright side of this whole journey. You’re changing, you’re “abnormal.” The majority of people will never know what you’ve learned. They’ll never have the strength and courage you have. You’re growing into this strong, intelligent fighter. Every day you strap on your boxing gloves and step into the ring with an opponent that never tires or weakens. That kind of endurance is admired far and wide. Your new independence allows you to be strong enough to do things on your own and take control of your life. You’re going to laugh more than you ever have. You’re going to appreciate things more than you ever have.

Some days you’ll wear the pain and fear like the rarest of gems. But some days, you’ll wear them like a “Warning: Toxic” sign. Either way, that’s a-OK. You’re allowed to have rough days, and you’re going to have rough days. There are going to be days that you don’t think you’ll make it through. There will be days you don’t want to make it through. But you will. And you will be a better you for it. Your friends will be truer, your love deeper, and your compassion stronger. These are things people would kill for. Be proud of them.

Like I said, this is going to be the craziest ride of your life. But we’ll make it through. You’ve got this, kid. Don’t ever doubt that.

Sincerely,

The 2016 badass Crohn’s warrior Becki

The Mighty is asking the following: Write a letter to yourself on the day of the diagnosis. Check out our Submit a Story page for more about our submission guidelines.

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