The One Statement I Want to Hear From Loved Ones About My Invisible Illness

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RSD, which stands for reflex sympathetic dystrophy, is something I’ve lived with each day for more than 10 years. It’s a chronic pain condition. Basically, my nerves constantly (that means all the time) signal to my brain that I’m experiencing pain in both of my legs, from my toes to my thighs. The cycle never stops. That means I live in pain all day, every day. When I tell people this, I usually get the following questions/reactions:

“So how can you do all those things?”

“Wow, that’s so impressive you’ve accomplished so much even with this condition”

“Does it really hurt all the time?”

“Is it a psychological thing?” or “Is it all in your head?”

“It must not be that bad.”

“Can’t you just take medication?”

“You don’t look/act/seem sick.”

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These statements are so incredibly frustrating to hear. My illness doesn’t define me, but it is a huge and real aspect of my life. Instead, I’d rather hear “I believe you.” Living with an invisible illness means that if you choose to tell people about your condition, you constantly have to convince people you’re struggling. Why is that? Why do I need to prove myself to anyone else?

Chronic, invisible and physical illnesses can be challenging to confront each day. And when you identify with so many other things in addition to your chronic illness, those who judge have a hard time fitting the pieces of your life together. Apparently, if it doesn’t make sense by their logic, it must not be real.

For so many people living with chronic illness, we put up a front. Each day we go out into the world attempting to convince others (and ourselves) that we’re “fine” or “normal.” We have to because we can’t allow our condition to control our lives or confine us. We can achieve and be excellent despite of or in the face of our chronic condition. But what’s challenging is that even when we give off the appearance of being “fine,” we’re struggling. 

The truth is, if I were to be honest about how much pain I felt each day, it would likely make others uncomfortable. When I do tell people, they’re impressed by me. Don’t be impressed by me. Please. This is just who I am. We all have things that challenge us and shape our identities. This is one of mine.

Instead, please accept my story and take this as an opportunity to learn more about the multiple dimensions of me. I live in pain each day, and I’m incredibly good at putting up a front. Sometimes this gets me in trouble because I’ve gotten pretty good at ignoring my physical (and sometimes mental) obstacles in order to live a “normal” life and do everything I expect for myself. Sometimes that makes me work harder and push myself more. I can’t allow my pain to rule me. I have to literally triumph over pain and then some each day. The extra bit is to prove to whomever that I am more than my diagnosis and that my accomplishments are above and beyond simply “in spite of my condition.”

When people find out you have a chronic illness, their disposition towards you changes. Your accomplishments are elevated because we extend sympathies to those who “own their struggle” or because we can’t relate or feel uncomfortable, so we attribute praise. But I’m just me. I’m one ordinary person with this specific challenge. It’s a constant part of my life, but it’s not the only part of my life. 

I’m a “spoonie.” In some ways, I need to be constantly aware of my daily obligations so I don’t burn out. Burnout is real. Running out of spoons is why I often “quit” at 9:30 p.m. these days. But that’s my reality. And all you get to do is accept that and support me. You don’t get to judge and decide for yourself based on my actions how severely I’m suffering or how real my pain is. You don’t get to decide for me if I’m making this up. You get to listen and validate. And gosh, validation feels so good! Validation sounds like “I believe you.” It sounds like “What do you need from me?” It feels like genuine understanding.

Follow this journey on I’m Probably Overthinking This.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and 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 Share Your Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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Macy’s Clerks Make Woman’s Birthday Extra Special With ‘Small’ Gesture

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A young woman’s 29th birthday became all the more special on Thursday thanks to a few sales associates at a Macy’s in Lake Grove, New York.

Lori Burke took her son and daughter, MaryEllen, both of whom have an extremely rare genetic disorder called Warburg Micro syndrome, shopping for MaryEllen’s birthday. An employee named Thea immediately approached the trio after noticing a birthday balloon attached to MaryEllen’s wheelchair. She then escorted them to the Lancome makeup section, where several other sales associates began grabbing merchandise as birthday gifts.

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Image courtesy of Lori Burke

Lori Burke told The Mighty that birthdays have always been a momentous occasion for the family. When her children were infants, she was told to not expect them to live past the age of 2. Now every birthday gets celebrated “in a big way.” Having others join in on the celebration only made the experience even sweeter.

Burke explained why the small moment was actually not-so-small on Facebook:

You see, whenever we are out in public, people normally don’t come towards us, they usually shy away. They usually give us a quick look and look away. We have been shopping many, many times in MaryEllen’s 29 years and no one has ever approached us with such excitement and joy! Thank you to your amazing employees for making this birthday one to never forget. It was a day that MaryEllen was noticed for just being a birthday girl, not a girl in a wheelchair that should be avoided. So, Thea and all the Lancome area girls at Lake Grove Macy’s, keep doing what you do because your joy is contagious! And thank you for making MaryEllen feel so special on her birthday.

“I can’t say enough about the lovely Macy’s associates,” Burke added in an email to The Mighty. “To go above and beyond and approach us, mere strangers, was something I will never forget. It was a small gesture for them, but so much more to us.”

Be sure to visit Burke’s blog, The Heartful Mom, for more stories about her family.

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A Letter to NEA President Lily Eskelsen Garcia

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Lily Eskelsen Garcia,

I am an educator. It was a job selection I did not take lightly. It was a calling I eagerly answered. It was a little bit of goodness once given to me as a child that I needed to give back to the world somehow.

I am a National Education Association (NEA) member, which you are president of. I come from a long and proud background of union coal miners, linemen and electricians.

I am a mother to a child who has special needs.

And once, I was a student as well. In fact, I was one of those students you referenced in your speech at the Campaign for America’s Future Awards Gala when you said that as teachers, “We diversify our curriculum instruction to meet the personal individual needs of all of our students, the blind, the hearing impaired, the physically challenged, the gifted and talented, the chronically tarded and the medically annoying.”

Chronically tarded. Medically annoying.

For years, I silently suffered in a schooling system that was not prepared to meet my diverse needs — my learning disability. Instead, I spent my early school years being punished for struggling in math. I missed out on recesses and art projects and class rewards because my mind couldn’t process the math worksheets and tests placed before me. It didn’t matter how hard I tried, how much I studied, how often I practiced, I failed. Every time. I became the kid who was bad at math, and everyone in my class knew it, too.

I was the “medically annoying” child who feigned illness after illness so I could go home. So I could hide my inadequacies. So none of my peers would see how hard math was for me. I was not trying to be annoying. I did not want to make my teacher’s job more difficult. I was trying to save face. To persevere. To somehow survive.

By the time I reached sixth grade, I was a shy and withdrawn student. I rarely raised my hand. I lacked confidence in my abilities. I loathed school. l felt worthless.

And then, I walked into the sixth grade classroom of Mrs. Hinkle. A room full of inquiry and diversity and creativity. A room full of warmth and positivity and acceptance. A room where I was recognized — for the first time — for my strengths instead of my weaknesses. I was no longer “Ali who was terrible at math.” I was “Ali who read with expression,” “Ali who was kind and trustworthy,” “Ali who won the D.A.R.E. Essay contest.”

I started to raise my hand. I started to believe in myself. I started to thrive.

As educators, we have rough days. There are formal assessments and informal assessments to plan, to give and to grade. There is data to be collected and reflected on. There are staff meetings and department meetings and committee meetings and “I-Think-We-Are-Just-Here-To-Say-We-Had-A-Meeting” meetings. There are lesson plans, grading and evaluations. And there are students to teach and inspire. Students who come from diverse backgrounds, who have diverse needs, who require us to diversify our classrooms.

I know our list of responsibilities is endless at best, but what if we focused on the opportunities we have been given as educators instead of the challenges? What if we replaced “We diversify our curriculum instruction to meet the personal individual needs of all of our students, the blind, the hearing impaired, the physically challenged, the gifted and talented, the chronically tarded and the medically annoying,” with this:

“We have been blessed with one of the most important jobs. Each day, we are given the opportunity to help all students — no matter what their abilities may be — feel successful, feel cared for, feel valued. We help them envision new ideas and search for creative solutions to problems. We help them hear and consider new perspectives and in doing so, challenge their own beliefs. We help them build the confidence needed to take risks, and when they fall, we pick them up, brush them off and build them back up. And when they soar — and they will soar — we are given a first row seat to cheer them on. We have the privilege to make a difference in the lives of our children, and that is the beautiful reality we are gifted with.”

Recently, on the NEA website, you reflected on your speech, writing, “Open mouth. Insert foot. That’s what I did.” Yes, you did. I sincerely hope the next time you are given the platform to speak about the students we are blessed to serve, you open your heart and insert acceptance, love and thankfulness.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with 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.

Lead photo source: YouTube video screenshot

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To the Loved One Who Doesn’t Get Why We Decline His Holiday Invites

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I often hear this phrase from a family member: “The road only goes one way.” What he means is that the visits we have are one way on his part — we never make a special trip to see him and his family. We have missed out on seeing his new home, the Fourth of July, Halloween and now Thanksgiving and Christmas. I think he feels hurt and neglected by my family, and we feel hurt because he doesn’t fully understand our situation.

When you have a child with special needs, the holidays are hard. Many invites are turned down, because honestly, we really don’t want to put ourselves through the misery of a long trip.

Some things I’ve heard are:

“Can’t you drive at night?”

“Doesn’t she have an iPad she can watch?”

“It’s a shame you don’t want to come and see my house, and where I live!”

Yes, we could drive at night. It wouldn’t make a difference; she wouldn’t sleep like a “typical” child.

Yes, she has an iPad. For our sanity, we don’t want to hear the same one minute song from “Imagination Movers” for 12 hours. No, she won’t wear headphones.

Of course we would love to see where you live and celebrate the holidays with you and all the family. I love road trips! Or, I used to. We would love to hang out and watch the kids play with their cousins. Heck, we would love to have adult conversations. A regular conversation not including medical issues, insurance and therapies.

The fact is, my child will not sit in a car for 12 hours; one hour is enough time to make me crave a stiff drink. She also has a very ridged schedule. If she is off by even a little bit, we all experience it. We have decided not to put her through unnecessary meltdowns. She has it hard enough as it is. I have tried explaining this year after year, and I’m frustrated that he just doesn’t get it. I am tempted to reply with her “Ongoing Problem List” from the hospital. To take an extended trip, we have to plan for every possible scenario. What happens if she gets sick? What if medical supplies are needed and something breaks? What happens if we ruin your holiday? Oh, the anxiety rises just thinking about it.

We love you, and it stinks we aren’t able to be together. Please remember during this time of year that we would love to be a part of all of the celebrations. It’s just simply not an option, so yes, now “the road only goes one way.” Hopefully that will change one day. Please have patience with us. Please keep inviting us. But please understand we will probably say no. Don’t take it as an insult. We wish we could be with you.

Instead, I can let you know that our doors are always open, and let me tell you, my house is bursting with excitement and joy! The magic of the holidays will never leave our home. No one is ever turned away at Christmas. Please come and join us anytime! Santa will always be a part of our lives, and we are so lucky to experience that. It’s a special treat we were given along with our precious daughter.

This year, if a friend or family member with a child with special needs turns down a trip to see you, please understand we’re not rejecting you. It’s just our current reality. Hopefully, it won’t always be this way.

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The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or illness during the holiday season. 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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4 Secrets of Having a Sibling With Special Needs

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As someone with one “typical” sibling and one sibling with “special needs,” I’ve grown up with a different sort of normal than some. Defining one of us as “special needs” reminds us more of the differences than the similarities, and in our own ways we all have differing individual needs. However, for the sake of clarity, I’ll use the term “special needs” to refer to my brother.

The experience and knowledge I’ve gained growing up with people with different types of needs has been extremely beneficial to shaping my personality and my life.

Still, I’ve noticed parents and others cannot seem to understand the type of relationship you share with a sibling who has special needs. Maybe it’s because there’s no one guide for siblings when one has special needs. I’d like to share some of my secrets.

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To People With Invisible Illnesses, From a Paramedic Who Didn't Believe You

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I’ve been a paramedic on and off for 10 years now. I’ve seen the good and the bad — probably more bad than good, but I’ve opened my eyes to something different.

I’ve seen people in Facebook groups post about how health care professionals treat people with invisible illnesses poorly because they don’t understand. They’re called fakers, drug seekers or attention seekers. I used to be one of those people. 

When you’re a new EMT or paramedic, all you want to do is fit in. You want to mesh with your partner and get along. You may get matched up with an FTO (field training officer) who’s been on the road one year too long. They’re burned out, and to them, every patient is another call away from their nap or TV show. 

Unfortunately, I became that medic. If someone said he or she had fibromyalgia, for example, I assumed that person was a drug seeker. I thought everyone could walk to the ambulance. If you didn’t have a visible illness, I treated you like crap. “C’mon, you can walk,” I’d say. 

It wasn’t until my own health began to decline and I needed help that I began to understand. I went from doctor to doctor trying to explain what the problem was. They looked at me like a faker. “I don’t know what’s wrong with you, but here’s a depression medication,” I heard. “Try that because it’s in your head.”

I now understand what my patients were going through. I didn’t realize how demeaning it was to be treated like that. I just wanted to fit in with my fellow co-workers. 

I’m sorry to those who I treated poorly. I understand now. I don’t work the road anymore, but I still see it in the hospital. I catch myself every once in a while making comments with my co-workers, but I stop myself.

What we need is a little compassion, and that’s something that isn’t taught in med school. I wish more awareness existed. So please continue to educate the medics out there. We really do love to learn.

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