What Helps Me to Stay Strong (Through My Family’s Chronic Illness Journey)

What Helps Me to Stay Strong (Through My Family's Chronic Illness Journey)

I’ve always found it difficult to share my feelings with other people. I would keep it all to myself. This, however, changed when we received the latest diagnosis for both my daughters. 

Let me start by giving you some background information about me and my family: It’s just me and my girls, and we live in Holland. We are also known as the bendy bunch, all three of us have Ehlers Danlos syndrome. And as a bonus, we all have some similar and some different additional illnesses (which we like to refer to as extra toppings). Mine are adenomyosis, dilated aorta, retinal vein occlusions, high blood pressure, and I no longer have my own teeth. Both my daughters have POTS, ME and as we know now since June this year Craniocervical Instability (CCI), Atlantoaxial instability (AAI), hindbrain herniation, and the youngest is close to brainstem compression. When they were giving out chronical illnesses, we were obviously front in line… And I’m pretty sure I forgot to write some of them down. 

The shock of these new diagnoses

The latest diagnoses were a shock. We’ve been dealing with chronic illnesses for quite a while now, but this one really gave me a scare. Not one, but both my girls have a life-threatening and life-limiting disease. And as I usually do when I get stressed, I started planning and thinking about what could be done to fix this. I turned to the insurance company, but the treatment, an operation done in another country, wasn’t covered. This didn’t come as a big surprise, because we had to go to another country for the diagnosis which, as you can probably guess, was also not covered.

The stress of receiving new, life threatening diagnoses

As I continued to process this, my thoughts went in all different directions as my emotions went into a spin. You wouldn’t have known that, though. On the outside I was calm and rational, and I tried to stay that way. I had to be strong for my daughters. They needed to know that everything would be okay, or at least, as normal as possible. When we received the news about these diagnoses, the adrenaline took over and I went into first, second and third gear. I’m still feeling it after two months because if I let go of this adrenaline, I’m afraid I’ll break down. And that’s not an option. 

Creating a Foundation and Establishing a Social Media Presence

In the last two moths following the diagnoses I started a foundation called Help Jane & Rosa battle CCI/AAI. We had to go to a notary office to make it official. As a result of the Dutch tax laws, I found that a foundation is the best way to go. Otherwise, all donations would be considered an income. Friends of mine built the website, and I deliver all of the text and images. We have also created a Facebook page, an Instagram account, a Twitter account and a YouTube channel. Unfortunately, most of the videos on our YouTube channel are in Dutch, however we try to make some English versions too.

How blogging has helped me cope with my family's chronic illness journey

Filming these videos was really awkward for me. In the beginning of this article I mentioned that I’m not a great sharer, but as you can see, I’ve stepped outside all of those boundaries I once had. Writing about what’s going on in our lives is one thing, however filming videos was a huge step for me. If you want a grin you should check it out. Even with me speaking in Dutch you can see how exposed and awkward I feel. Luckily my daughters, especially Jane, are taking care of the video aspect. This meant I could start writing a blog for our website. All this work establishing a social media presence is to raise more awareness and to fight for an operation for both of my girls.

The Support of Friends, Family, and Aquiantances

I always knew I had great friends and family (not all of my family has been supportive, but who has a perfect family?) but what really surprised me is how supportive even my colleagues have been. Not only have they supported me by making a donation, they have also done so much more. One started designing T-shirts, one started developing calendars, and Jane’s old school of is thinking about a project for raising funds. They offer help in any way they can. I know not everyone is so lucky, and for me, receiving all this support was a true eye opener.

I realised that not only was I bad at sharing, I was also reluctant to ask for help. I surprised a lot of people by reaching out for help, and as the time goes by, it gets easier to do so. I still blush when I do, especially when I do it face to face. But I’m managing it and it makes me proud that I do. Today during a coffee break at work, I asked the owner of the coffee bar if he could share our fundraising page and make a donation. And again, the warmth of people was overwhelming.

The support of my friends, family, and acquaintances is very important

On the workdays I’ve been drinking my morning coffee there for over the last five years, my daughters’ illnesses have come up in some conversation. He was very concerned for their health and immediately started thinking about things he could do to help. This shows that even acquaintances are sometimes more than just people you meet now and then. The bond you have with them is sometimes stronger than you think.

All Of This Helps Me To Stay Strong

Blogging and writing about how I feel what’s going on, and where we stand is really helping me cope. Sometimes it puts things into perspective or helps me to channel my emotions in a constructive way. Today I felt sad while I was going to work. I was quiet during a meeting because my thoughts were all over the place and I felt like I could burst into tears at any moment. So, I started writing this article, thinking about all that has happened in the past two months and all that I’ve achieved. And for a chronically ill mum, with chronically ill daughters, I feel like that’s a lot.

So, I’ll keep you posted about how all of these illnesses have an effect on us and our lives, about how the fundraising is going and what difficulties comes with raising funds, and how all of this mixes with work and day to day life. Sometimes it’ll be sad, sometimes it’ll be fun and sometimes it’s just how it is. Because every day is different and life don’t always turns out as planned. And that’s okay, as long as we have each other we’ll get wherever we want to go, eventually. The love in our family will always get us through the rough spots and that’s how I stay strong. 

Monique Blaauw is a mother of two daughters (20 and 19). Founder, chair(wo)man and treasurer of the Help Jane & Rosa battle CCI/AAI foundation. She has been a single mother for 18 and a half years. Works fulltime, as well as being the caregiver for both her chronically ill daughters and older mother and is chronically ill herself. 

Working In A Gym Helped Me Changed My Perspective Amanda’s Spoonie Story

I have been a chronic illness warrior since I was 4 years old and now I’m almost 30. It’s been a long road. First, I was diagnosed with Juvenile Rheumatoid Arthritis, which then was complicated by Lyme Disease contracted in my early teens but not diagnosed until a decade later. Finally, in the last 3 years I have been diagnosed with Postural Orthostatic Tachycardia Syndrome and Ehlers Danlos Syndrome. Crossing my fingers that’s everything diagnosed!

Watching The Other Kids

Growing up I fought back a lot of bitterness and resentment as I watched the other kids, teens, and twenty-somethings living their lives. I wanted to play sports, go out dancing and drinking, get a job I loved, or at the very least not need crutches and pills to get through my day.

Growing up I fought back a lot of bitterness and resentment as I watched the other kids, teens, and twenty-somethings living their lives.

I spent decades shuffling from doctor to doctor and doing what they said, thinking of my body as a malevolent adversary more with each passing year. 

Changing My Perspective

Three years ago I got a job at a gym during a period of remission. As I learned about fitness and got deep into the strength athlete world I began to shift how I thought of my sick person lifestyle. Surrounded by people who did their PT, stuck to their diets, and took their supplements with religious intensity, I no longer felt alone. Here was a mindset I understood and, although my results didn’t look like an athlete’s, the similarity in lifestyle began to change my perspective.

There was a mindset I understood and, although my results didn't look like an athlete's, the similarity in lifestyle began to change my perspective.

Today, in recovery from one of the worst flares of my life, I balance my time between napping and gym-going. I lift weights and use a cane. I take creatine and also NSAIDs. My diet is dictated by painful digestion and I also count my macros. For the first time in my life I see my body as, at worst, a project I’m working on and, at best, my teammate in life.

The Athlete’s Approach

The athlete’s approach to chronic illness hasn’t solved all my problems. When I’m in pain for days on end I still sink into a stupor of depression. I still hate the choices I make to miss important events with my friends or give up a job I love because of my health. I may never be able to have children or pursue a high-powered successful career. But this new mindset has given me a rope to hold onto in the dark days.

On Instagram I follow a mix of powerlifters and spoonies. I find I have connections to both groups. I write meal plans and teach yoga for athletes and coach spoonies on managing their energy levels in flares and during recovery periods. I get to learn new ways to activate my quads before a squat from a powerlifter and then scroll a bit more for a new way to use turmeric to reduce inflammation from a spoonie. It’s a beautiful meeting of the worlds of sport and sickness and I’m learning to find the balance.

It Is Possible!!

I’m signed up for my first powerlifting meet this fall. I know my numbers are going to be awful and I wont be even slightly competitive in the sport. But I’m doing it. I’m getting up there and doing the thing while still being sick, which is more than my pre-athlete mindset would have even known to dream.

I spent years trying to get better so that I could do things. Now I’m trying out doing things and getting better all at once. Doing things and being chronically ill simultaneously. It’s hard. It’s a daily battle and I slip and I fail and I cry a lot. But it is possible. And I’m doing it. And you can too. 

What I Wish the Public Knew About My Chronic Illness

What I Wish the Public Knew About My Chronic Illness

I once spent eight months out of the year in the hospital. As the months passed and my emaciated frame sunk further into the gurney, I was denied the basic luxuries like a homecooked meal (if I could eat) or sleeping alongside the purring of my precious kitten. I struggled to make the best of it. It was during my eight-month hospital admission that I created the blog Hospital Princess, along with its affiliated YouTube channel and Instagram. What started as a way to update friends and family about my situation morphed into an outlet for me to spread awareness.

My Diagnosis

What prompted such a long hospital admission? You may ask. I’m currently 22, however my 17th birthday was celebrated with flushed cheeks, itching skin, and my heart pounding like a subwoofer in my chest. While I had been sick prior to that, I was suddenly unable to go anywhere or do anything without rebounding allergic reactions. My world as I knew it was irrevocably altered upon receiving the diagnosis of Mast Cell Activation Syndrome.

Mast cells are allergy cells within the immune system. The role of a mast cell is to protect the body against pathogens. My mast cells take the task of eliminating pathogens a little too seriously. I began experiencing life-threatening reactions triggered by all foods and food proteins in the air, perfumes, cologne, lotions, detergents, hormonal fluctuations, strong emotions, hot or cold temperatures…you name it. My family could not even cook in the house without putting me in danger. They had to convert the garage into a kitchen in order to prepare and eat their meals.

What I Wish the Public Knew About My Mast Cell Activation Treatment

The traditional treatments for Mast Cell Activation Syndrome failed. As a result, I was hospitalized in order to begin the last resort option known as the continuous diphenhydramine infusion. Diphenhydramine is simply the fancy term for Benadryl, and I had (and still have) it infusing into my central line every second of every day in order to control the severity of my reactions. Since I had been reacting to my feeding tube formula and IV nutrition, the Benadryl pump allowed me to tolerate some nutrition at the very least.

We assume that my case of Mast Cell Activation Syndrome is secondary to the genetic connective tissue disorder Ehlers Danlos Syndrome (EDS). EDS has also caused a myriad of other maladies: Dysautonomia/POTS, Chronic Intestinal Pseudo-Obstruction, Gastroparesis, and more. My doctors and I continue to search for answers because if we can pinpoint the root cause or contributing factors and treat them, perhaps my mast cells will improve.

The Reality of My Stay in Hospital

Consider the various stressors of the hospital. I am sure you can recall the physical and emotional burdens whenever you or a loved one is admitted for medical care. You know, the restlessness, the incessant beeping of IV pumps, and the early morning awakenings just to repeat the same story you already told umpteen times before. Patients and families contend with all of the above while healing from illness—fighting to get better, for the chance to improve, to overcome, to love, to live. This was my life for nearly a year.

Being chronically ill, I spent my leisure hours in the confines of my four-bedroom walls. I was always a bit stir crazy, craving a change of scenery. But when I was finally discharged after a gruesome eight months, I celebrated the victory of returning to the place I once complained about so often. The nurses cheered as I exited the oncology ward.

What I Wish the Public Knew About the Reality of My Stay in Hospital

Unfortunately, I couldn’t leave the hospital behind in the same way that the majority of hospital patients do. I left garbed in a filtered mask with a nasal cannula hidden underneath. On the handles of my custom wheelchair hung a backpack containing four pumps that infused medications through the central line in my chest, and formula into the tube on my abdomen that leads directly into my small intestine. At that moment, I found that my true self became lost within the tubes and lines protruding from every orifice of my body.

However, I knew that I had the power to eventually find myself again.

The Judgement I Receive from Healthy Outsiders

Now, I can’t step a foot outside my house without receiving the questioning looks of pity. People undoubtedly feel sorry for me. They see my wheelchair, the tubes, the miscellaneous lines protruding from every orifice of my body, and their eyes drop in sullen despair. I know what they are thinking because their gaze reveals their innermost thoughts. Instead of seeing a successful young woman with ceaseless opportunities ahead of her, they assume the opposite—that my disability renders me an invalid, incapable of participating in what life has to offer. To them, a life with limitations is not worth living. On the rare chance that conversation does ensue, they are surprised to learn I am in college and soon-to-be married; as if someone with health challenges cannot accrue accomplishments in school, careers, and relationships.

Picture of the Author with Her Treatment Tubes

The stigma of disability constructs this pattern of erroneous misconceptions. Interactions with total strangers provoke the insecurities of the girl I was when I was leaving the hospital four years ago—the one who struggled to recognize she was more than her illness. As those feelings resurface, I am reduced to an object made up of medical equipment, devoid of emotions, in which they direct their sympathy. It never crosses their mind that I am a real human being.

My goal as a Chronic Illness Advocate is to prove that having a chronic illness does not diminish a person. Depending on continuous infusions, a feeding tube, and various other medical interventions for survival, is not easy, yet it is possible to live a fulfilling life despite chronic illness—even when your daily routine starts to resemble a never-ending hospital admission.

About The Author

Cheyanne is a 22-year old college student hoping to pursue a career as a counselor in chronic and terminal illness. In her spare time, she runs a small Etsy business and writes about psychology and neuroscience for CogniFit. Although Ehlers Danlos Syndrome and its comorbid diagnoses, Mast Cell Disease, Dysautonomia, and Chronic Intestinal Pseudo-Obstruction present its challenges, she strives to prove that life with chronic illness is still worth living through her blog and its affiliated YouTube channel at hospitalprincess.com.

Chronic Illness Perspective Attending Warped Tour: Part Two

Chargie Goes Warped

Chargie Goes Warped Part 2

Attending Warped Tour from a Chronic Illness Perspective

The people you meet at Warped Tour are some of the kindest people in the world. Everyone has a different walk of life and their own struggles, mine happens to be Ehler’s-Danlos Syndrome (EDS); yet, on that one day all differences are pushed aside. Everyone shares a bond stronger than most: a love for music.

Story Untold
Janick Thibault, vocalist of Story Untold, singing to the crowd from the Owly stage. Photo taken by Hana Belanger.

Story Untold

I was grateful for a saved spot. People began talking and sharing laughs before the next scheduled set was to appear.  Never having heard Story Untold before the person next to me encouraged staying saying they were pretty cool. I love discovering new music so I locked my wheels and prepared to be amazed by a new band. Just as I anticipated, I became entranced with their sound and thoroughly enjoyed their set, even if they reminded me of an off brand All Time Low from Canada.  Janick Thibault, vocalist of Story Untold, looked just like Alex Gazkarth, vocalist of All Time Low. If it was not for Janick’s tattoo sleeve, one could not be blamed for thinking up conspiracies that Janick is actually a clone of Alex who was shipped as a baby to Canada. Along with their awesome original music, I was thrilled when the band threw a curve-ball of nostalgia to the crowd by covering classic Warped Tour bands in a pop punk mashup.

Where Will We Find New Music Now

Warped Tour was always good for introducing people to new music and creating gateways to fan bases. In 2016 I heard a band called Pepper play their set while I was in line to meet a band by the main stage. I fell in love with their sound and am proud to call myself a fan of their music today. It is a little sad that this is another loss from the end of Warped Tours.

Chargie Goes Warped
UK pop-punk band, As It Is, passing a notebook around. From left to right is Alistair Testo (bass), Patty Walters (vocals), Patrick Foley (drums), Benjamin-Langford Biss (guitar and vocals), and Hana Belanger (Chargie). Ben is leaning over as I talk about the lyrics inside my songwriting journal. Photo taken by Donald Belanger. Edited by Hana Belanger.

As It Is

I found myself singing along to As It Is’s set-list while waiting in the merchandise line for Sleep on it. I was super excited to hear the newest As It Is songs performed live. At the time their third full length album, The Great Depression, had yet to be released. The only two songs from the album available to the public were The Wounded World and The Stigma: Boys Don’t Cry. The Wounded World was about how society is always quick to blame everyone else except for themselves, which in itself is hypocritical. We are so busy pointing the finger and then pulling the same trigger. The Stigma was about breaking the stigma that “boys don’t cry” and that it is okay for boys to both feel and show emotion. Hearing both played live and shouting them at the the top of my lungs was absolutely rattling and surreal.

Set It Off

Wheelchair accessible
Wheelchair accessible

Arriving at the Living the Dream Foundation riser just as Set It Off was playing Killer in the Mirror meant the first two songs, Uncontainable and The Haunting were missed. This information was found on Twitter. The internet is a great place to find leaked set lists and any spoiler imagined. Since I was still using the wheelchair I used the lift to get on the riser while my dad took the stairs. Set It Off were only performing on three Warped Dates and their fall tour did not include a Boston date. I was extremely grateful for catching as much as I possibly could. Who knew when I was going to see them again? After The Killer in the Mirror I was surprised and enthralled that N.M.E was playing. N.M.E stood for No More Excuses and was one of my favorites off of their second full length album, Duality.

Why Worry

As always, Set It Off ended their set in the best way possible with Why Worry. Why Worry usually begins with a sing along. Yet, this show Set It Off went right into it. They even brought on a kid from backstage to sing the chorus before the bridge. The only thing that really bugged me about this show is that with the new era being brought on, the Duality diamond has disappeared and turned into an hourglass. That meant instead of ending the shows with hands forming the diamond when Cody Carson, vocalist of Set It Off, says “We are Set. It. Off” at the end of their set, arms were crossed to form an hourglass. The duality diamond is supposed to represent the balance and duality of good and evil inside a person. The quote from the song “Duality” from the album, Duality, is “I am good, I am evil, I am chaos, I am solace, I am human. And that’s all I ever wanted to be.” That was the representation of the logo being a diamond. To change the logo was to change everything.

Chargie Goes Warped
The crowd at Vans Warped Tour as Set It Off plays in the Journey’s Left Foot Stage. Photo taken by Donald Belanger. Edited by Hana Belanger.

Simple Plan

Immediately after Set It Off’s set on the Journey’s Left Foot stage Simple Plan started their set on the Journey’s Right Foot stage playing “I’d Do Anything”. Simple Plan was absolutely amazing. I planned on watching a few of their songs and then going down the lift to meet Set It Off before returning the wheelchair and using my cane again. But, the wheelchair lift operator was off the platform. Good news was that I got to stay to watch them shoot water at the crowd using super-soakers and play classic hits like “Jump” and “Addicted”. When I finally made it on the ground, Simple Chargie Goes WarpedPlan was ending their set with “I’m Just a Kid” and the line for the Set It Off signing was about a half a mile long! It took the rest of Simple Plan plus the whole entire 3OH3! set before I could finally meet the band and have them sign my notebooks as well as for Cody to write down a quote for me. I had Cody write the lyrics “Devour the critics, dismiss the critics” from the song Dream Catcher because I wanted to get that tattooed on my forearm in his handwriting. Having the lyrics just written down inspires me to not care what anyone has to say while I waiting to get the tattoo. I will continue to fight for my dreams and not let anyone push me away from them.

Dieter Unrath

Immediately after meeting Set It Off it was time to return the wheelchair. I took my cane and went on a search to find Dieter Unrath, photographer/drummer/catering/awesome person, so I could interview him. Once we found each other we made our way to a quieter place near the amphitheater and sat down to have a chat about mental health in general and on tour. Talking with Dieter was an incredible and engaging experience. We went over how tour is both physically and emotionally exhausting as well as the reasons one should reach out for help. We also discussed healthy vs unhealthy coping mechanisms. You can find the video link here to see the awesome interview:

Wrapping Up Warped Tour

Wrapping up the evening we hit the amphitheater to catch as much of R I L E Y’s set before leaving the grounds early due to my father and I not feeling to well. It was a long hard day in the heat, so leaving a little early was not the worst thing in the world. Besides, health comes first. The aftermath of the festival meant a week of recuperation and soaking in the memories made. The end of Warped Tour after 24 summers is an emotional one, yet I feel proud and blessed to have participated in the last three years. I am inspired to always keep believing in the scene as well as believing in myself and my own capabilities.

About the Author

Chargie Goes WarpedHana Belanger is a disability advocate and activist, contributing author for The Unchargeables, slam poet and important part of the Unchargeables Twitter Team. College student and barista by day, music photographer and fan-girl by night, this nerd of all sorts balances chronic illness, a social life, and learning to be an adult. An optimistic gal who always knows where one can turn on the light even in the darkest of times is still trying to find the meaning to life. You can find her living in the moment usually at a concert or cafe with ice packs, a camera, and headphones.


Chronic Illness Perspective Attending Warped Tour: Part One

Chargie Warped Chronic Illness


“I couldn’t wait for the Summer and the Warped Tour!” The infamous phrase from Blink-182’s “The Rock Show” brought out the excitement for every emo kid across America. For 24 summers The Vans Warped Tour presented by Journeys was an escape from reality for a single day. For just one day people from all different walks of life gathered together and spread positivity as they all shared love for one thing: music. Growing up both chronically ill and musically obsessed it was not surprising that I too found solace and support from the “punk rock summer camp” and “summer camp for misfits” for three summers at the Vans Warped Tour. This year Kevin Lyman, the legend behind the madness and tour founder, announced Warped would be going on it’s final cross-country run this summer. An era was ending. As a punk rock Chargie I felt it was my duty to report the events of the final Vans Warped Tour live. Here is the recap of the adventures at the Xfinity Center in Mansfield, Massachusetts for one last “Summer and the Warped Tour” experience.

Hope for the Day

The goal was to attend the free mental health workshop TEI (The Entertainment Institute)  with Hope for the Day and Patty Walters from As It Is before gates opened.  Unfortunately, due to a late start, not only did that not happen but the first set was also missed. Hope for the Day is an organization based in Chicago that achieves mental health and suicide awareness through proactive suicide prevention and mental health education. As a mental health and disability activist it was important to engage and live tweet the mental health discussion. Unfortunately, as often happens living with chronic illness, change 992 was put into action. On the bright side, it was not raining like last year. The sun was shining and the day was just beginning. A late start was not about to ruin the last Vans Warped Tour.

Important Delivery

With cane in hand and a bag on my back my father and I made it through the gates and inside the venue. The first stop was to find the Sleep On It merchandise tent.  A poster and Arnold Palmer needed delivery so it only made sense to stop there first. Conveniently they were located across the Owly stage, which was where the band would be performing later on in the day. An ice-cold Arnold Palmer was handed to their merch manager and all around awesome personality, Alex Smith.  A camo hat for dad was purchased and cool Sleep On It pin and sunglasses were received. A great start to a great day. The next stop was to the Grayscale tent to finally buy a copy of Adornment (their debut album). We then hit the main stages to catch the We The Kings set. In 2016 I had missed their set, so naturally I made it a goal to see them.

We The Kings
We The Kings playing on the Journey Right Foot Stage in Mansfield, MA July 27, 2018 at Vans Warped Tour. Photo by Hana Belanger.

Inclusivity Matters

What is really cool about Vans Warped Tour is how the Warped staff work hard to be inclusive and accessible. Across from the main stages was the Living The Dream riser so disabled fans and their friends would be able to see their favorite bands play. On one side of the riser were stairs and the other side was a wheelchair lift. Just walking in the heat had caused fatigue so after climbing the stairs and hanging the cane on the railing and it was time to enjoy We The Kings play their set. A spectacular view and a well needed rest from walking the venue. The day had only just begun after all. I needed to save as much energy as possible to make it through the day.

Relatable Rock Stars

Once their set was finished my dad suggested we head straight to the As It Is tent to catch them at their meet and greet. After wanting to meet the whole band for some time, this was the opportunity. Of course, as soon as we got there a whole line had begun and the band was running late. It didn’t surprise me that a large line was being formed early. As It Is have grown so much since the band they were six years ago with relatable lyrics and strong advocacy work to keep the mental health conversation going. In fact, their newest album which was just recently released, The Great Depression, goes over keeping the conversation of mental health going and how it is okay to not be okay. I ended up buying a download card and hope to be reviewing the album soon.

Chargie Goes Warped
Charles Trippy, bassist of We The Kings, playing bass and staring off into the crowd. He is wearing a 3OH3! shirt. Photo taken by Hana Belanger.

The line was long, so while my dad stood in my place I would sit down on the ground and listen to the set of Chase Atlantic. By the time I got to meet the boys I was overflowing with nerves and clutching my cane with trembling hands. The four gentlemen were understanding and even chatted with me a bit. Benjamin Langford-Biss, guitarist and vocalist of As It Is, explain to me that “no lyrics are sh***y lyrics if they come from the heart” after apologizing for the words in my songwriting journal I wanted to have signed. What was truly amazing was how genuine they were. Patty Walters, vocalist of As It Is, smiled and asked questions. After apologizing for being nervous they all gave assurances that everything was fine.  A famous Patty Walters hug before taking a picture with the lads was amazing. It was truly an honor meeting them.

We The Kings

On the way to the tent to meet We The Kings a portable charger had to be picked up so Twitter could be updated as much as possible. Service at the  venue was limited so it was tough. While trying to distinguish between the line for We The Kings and the crowd for Knuckle Puck I ended up collapsing because my knees gave out. While my dad went to go get a wheelchair from guest services I met a few fans in line for We The Kings and ended up striking conversations with them. We The Kings was one of the many touring bands  whose songs I constantly used to help me cope with chronic illness. Songs such as “Check Yes Juliet” and “She Takes Me High” would distract my mind from symptoms such as moderate to severe joint and muscle pain as well as nausea due to Ehlers-Danlos Syndrome (EDS).

Healing Through Music

Other songs like “Heaven Can Wait” and “Just Keep Breathing” remind that life is always worth living, even through the bad days of wanting to jump off  “Skyway Avenue”. Their upbeat sound and positive lyrics were a huge help in staying strong through fatigue and the craziness chronic illness brings. The first time seeing them live as well as the possibility of meeting them fueled excitement. I was, however, hungry; so, as soon as dad came back with a wheelchair cherries and strawberries made a healthy snack while waiting for the chance to meet the band.


Charles Trippy, bassist of We The Kings, taking a selfie with Hana Belanger during a We The Kings meet and greet/signing. Photo taken by Hana Belanger.

Before I had a chance to realize what was happening my dad had wheeled me in front of  Travis Clark, vocalist of We The Kings. Immediately he greeted me with a hug and asked my name and how I was doing. He then took my Punk Rock Summer Camp shirt and passed it around to be signed. I made my way to each member until I reached Charles Trippy, bassist of We The Kings as well as daily vlogger for a YouTube channel called CTFxC. While I was saying hi he noticed my temporary tattoo I had on my shoulder, mimicking the tattoo he has on his arm. It was a simple blue and purple wifi symbol, although in the CTFxC stream of things it had way more meaning. I mentioned that I loved his vlogs as well as Travis and Danny’s too. I even showed him my CTFxC and This Star Won’t Go Out wristbands.

Sneaky Selfie

After a few minutes of chatting he asked if I had a phone and then snuck a selfie with me. Photos were not part of this meet and greet according to a very official looking cardboard sign, yet Charles took the time to quickly sneak a photo. Him going the extra mile really made all the difference. My dad started to pull me away so we could stop at the med tent and cool down for a few minutes. I quickly put the brakes on, insisting that I needed a hug from Danny Duncan, drummer of We The Kings, before leaving for a quick break.

Sleep On It

Luka Fischman of Sleep On It crouched down next to Hana Belanger as she laughs at him trying on her Texas hat for size. Photo taken by Donald Belanger. Edited by Hana Belanger.

We made it just in time to sneak in for a spot in front of the barrier just before my friends in Sleep On It were about to hit the stage. This marked my third time seeing this up and coming Chicago pop punk band and my wheelchair could not have been parked in a better spot. Before Warped Tour had started on its final run teasing the band online had been in fun; even going as far as a petition to have them cover Smash Mouth on tour. This earned disapproval by Jake Marquis’s, guitarist and vocalist of Sleep On It. Earning an eye rolling emoji after persistently pestering the band account to cover Smash Mouth was weird. I had a feeling they would not play a cover, yet was still anxious to see if they would make mention of it. During sound check I was both surprised and hyped to hear Teddy Horansky, guitarist and vocalist of Sleep On It test the mic by singing “Somebody once told me the world was gonna roll me, I ain’t the sharpest tool in the shed” by Smashmouth. To my dismay, Jake did not continue with the song but just did the scripted “Check one two, check one two.”

Spectacular Set

The actual set was beyond spectacular, like it always is watching the sleepy boys take the stage. It had been a hot minute since I had seen Luka Fischman, drummer of Sleep On It, play a set. Last time I caught the boys on tour, Eric Somers-Urrea, drummer of Marina City, was filling in for Luka while he rested after a shoulder injury. Being able to see Luka taking it away on the kit felt like everything was alright again. The highlight of the set was not Luka’s awesome drumming skills nor was it the fact I knew every single word of each song in the set list and had the perfect view from which to shout the lyrics. Hands down the best part of the entire set was the energy of AJ Khah, the band’s bassist.

A Better Bassist

Bassists who do nothing but stand in place and play has always been a grudge of mine. Khah is the polar opposite of that. He runs across the stage and headbangs, making phototastic hairflips happen. He engaged with the crowd and rocked every single note. As a photographer, that is the stuff that is entertaining and preferable to shoot.

Warped Music Chronic Illness
Photo taken by Donald Belanger. Edited by Hana Belanger.

Feeling Connected

As a human being it immerses me into a whole new world where everyone geeks out about music as much as I do and no one judges you for it. That’s how every concert experience should go and Sleep On It exceeds my expectations each set. At the close, while they all walked off, for some reason had this new found confidence and yelled “ONE MORE SONG, PLAY COPE!” Jake heard my comment and ran back on stage, locking eye contact with me and shouting back, “NO! NEVER AGAIN!”

The Most Annoying Fan on Twitter

After their set I noticed Luka was talking to some people on the other side of the stage. There were some nice people that they saved a spot while we traveled over to go say hi. Of course I have to make every encounter awkward, and just waited until he noticed me sitting and approached me. Continuing with the awkwardness, I introduced myself to him as “the most annoying fan on Twitter”. He did not agree and dismissed this idea. Despite my annoyance my love for the lads really shows through. We had a nice conversation until I was asked by who I assumed were his parents if a picture could be taken. Luka admired my hat and asked me if he could wear it for the picture. Curious to see him wear it I agreed and let him try it on for size. A bit small, but I had to admit he rocked the Texas hat better than I did. That surprised me because hats were definitely a me sort of thing.

Chargie Warped Chronic Illness
Hana Belanger posing with the band, Sleep On It. From left to right: Zech Pluister (vocals), AJ Khah (bass), Hana Belanger,Teddy Horansky (guitar/vocals), Jake Marquis (guitar/vocals), and Luka Fischman (drums). Photo taken by Donald Belanger. Edited by Hana Belanger.

As It Is hit the stage at 4:00 and their was a nice view from the Sleep on It merchandise tent line. They had made several jokes about the 4:20 meet and greet time during their set so of course I felt compelled to joke back when I met them. Alex Smith, Sleep On It’s merchandise manager was handing out stickers and signed CDs to the line. Before handing my books to be signed I apologized for yelling “PLAY COPE.” All was forgiven and we were able to take a quick picture before hurrying to catch what I could of Set It Off.

Continue to follow the rest of Hana’s adventure #ChargieGoesWarped in Part 2 available Sept. 21, 2018.

About the Author

Chargie Goes WarpedHana Belanger is a disability advocate and activist, contributing author for The Unchargeables, slam poet and important part of the Unchargeables Twitter Team. College student and barista by day, music photographer and fan-girl by night, this nerd of all sorts balances chronic illness, a social life, and learning to be an adult. An optimistic gal who always knows where one can turn on the light even in the darkest of times is still trying to find the meaning to life. You can find her living in the moment usually at a concert or cafe with ice packs, a camera, and headphones.

5 Ways Dance Has Helped Me Cope with Chronic Illness

Read about how dance can help you cope with chronic illness on The Unchargeables!

When you’re chronically ill, it’s often hard to keep up with hobbies that you once were able to do. Thankfully, one of my hobbies I’ve been able to keep up with, albeit at a slower pace, actually helps me cope. I try to be very realistic when it comes to chronic illness. I know that I need to protect my body and treat it well, but you also need to take comfort in things you love, so I try to find that happy balance. I know there are many people, especially with my condition, hypermobile Ehlers-Danlos Syndrome (hEDS), that were or are a dancer and have benefitted greatly from it and equally have had a lot of issues from it, which I have too. I’d love to share some of the ways that dance, in particular ballroom and Latin, has helped me.

1. Family and Social Aspects of Dance

Dance can provide a community to help cope with chronic illness.One of the big ways in which dance has helped me is not necessarily dance itself in the physical sense, but the community behind it. I’ve been at my dance school since the age of 9 (I’m now 25) so I’ve really grown up with it. I feel like my teachers and people I have met there are all part of my little dance family. Even if I didn’t get to dance or one day am unable to dance at all, just meeting up with people that share the same passions is really rewarding. I now go to a children’s class and an adult class once a week and really look forward to that time to meet and talk to people. I really enjoy seeing others progress too, especially some of the children who I’ve known since they were very young. It’s so lovely to see them succeed and find their own little family.

At University I was also part of a dance team. Other than that I didn’t have many friends there, so my dance friends really were a major part of uni life. A lot of them were also there for me when I was really struggling in my final year, as that was when a lot of my pain and issues started. It is a support system that’s really beneficial, especially now that I’m chronically ill.

2. The part dance played in my diagnosis

TW for weight issues/eating disorder type content.

This is a tricky one, but in a way dance did help me to be diagnosed. I’d had the odd issue in my teens like headaches, anxiety, and then some GI issues in my later teens, but nothing much that would have pointed in the direction of EDS. When I was 19, I had some issues with anxiety that impacted my physical health and eating habits and also therefore caused weight loss. A lot of my fatigue started after that, but I improved a little bit after a few months at home.

In the next year I was working abroad as part of my university degree and unfortunately didn’t dance whilst I was there. At the time it didn’t really bother me. But when I got home and started my final year of university, it really started to get difficult and I was in a lot of pain. So much so that I actually failed my last year due to feeling so ill. That prompted me to look into what was wrong. After seeing a rheumatologist, they recognised my symptoms as EDS and I had my diagnosis. Looking back, I realised that maybe dance had been keeping me strong. Although it did cause a lot of pain, maybe stopping was a good thing in the long run as I may never have been diagnosed with EDS.

3. The way in which dance supports me physically

Ballroom dance has helped one Chargie maintain fitness despite chronic illness.On the advice of my rheumatologists I’ve kept up with dancing and eased back into it after stopping; they believe that as long as I’m careful and pace myself that it will help to strengthen my muscles again. Unfortunately with a lot of activities like dance or gymnastics, people tend to get worse when they stop or have to rest an injury. I know that I’m fairly lucky, as some people aren’t able to dance again after an injury. I’m always thankful that I’ve been able to get back into dance being a part of my life. I can’t do as much as I was doing before, but even just the little bit I do helps. With my type of dance, it is quite easy to refrain from hyperextending and stretching too much – a lot of the moves tend to strengthen.

Due to my dysautonomia-type issues, it’s also important to maintain a bit of cardiovascular conditioning, so the warm ups and slightly faster dances help to keep up my general fitness levels, too. Being able to do some beneficial but low impact activity really helps me to cope with finding the balance between not overexerting, and therefore making myself worse, versus the other end of the spectrum of not doing enough exercise, which can also make you worse. This is something that unfortunately applies to a lot of chronic illnesses.

4. Structure and Reason

Another thing that can happen with chronic illness is that you can lose structure in your day and just life in general. At the moment I’m not working, as it’s hard to find jobs that suit how my condition affects me, so I’m at home a lot, which can get quite lonely and boring. Something as simple as having a dance class scheduled or an exam to practice for gives me a bit more to look forward to and to occupy my day with.

5. Mental Health Benefits

As well as having a physical illness/disability, I’ve also struggled with mental health issues from the age of around 15 – anxiety and low mood being the main ones. Something like dance gives me a reason to be more positive and also gives me some confidence despite my anxiety. I’ll never be the most confident person or without anxiety, but sometimes dance lets me have that little bit of sparkle and confidence that I am good at something. I’m also a big believer that mental and physical health really do affect each other so being able to improve both is very important.

About the Author:

Chloe writes about how dance helps her cope with chronic illness on The Unchargeables.Chloe is 25 and lives in the UK with her family and two guinea pigs. She is a French and Religious Studies graduate, dancer, music and musicals lover, football fan and has hypermobile Ehlers-Danlos Syndrome.

Chargie Story: How Capricious Found Her Answers

Capricious Lestrange writes about her chronic illnesses as Chargie of the Day on The Unchargeables.

My name is Capricious. I’m 46 and I live among the rolling bluegrass hills of Kentucky.

I took the name Capricious after decades of being forced to constantly compromise and change plans. What I wanted to accomplish never quite lined up with my capabilities, making it appear that I was fickle or impulsive to the outside world.

I was diagnosed with the rare genetic disorder known as Hypermobile Ehlers-Danlos Syndrome (hEDS) less than a year ago. Ehlers-Danlos Syndrome is a disorder which affects the body’s production of collagen and can affect everything from the joints and skin to bones and organs, as collagen provides a matrix for almost every material making up the human body. I searched 19 years for answers about what was wrong with my body and visited dozens of doctors. In the early years, I was often told to lose a few pounds and exercise more, that my pain couldn’t possibly be that bad, and was sometimes accused of somatization.

Eventually, as my condition grew more severe and the problems too obvious to ignore by doctors, I was diagnosed with a kidney disease called focal segmental glomerulosclerosis (now in remission), degenerative disc disease, carpal tunnel syndrome, fibromyalgia, chronic fatigue syndrome (ME/CFS), a form of dysautonomia common to EDS called Postural Orthostatic Tachycardia Syndrome (POTS), osteoarthritis, irritable bowel syndrome (IBS), Gastroesophageal Reflux Disorder (GERD), severe chronic migraine, tension headaches, cluster headaches, endometriosis and polycystic ovarian syndrome (PCOS). Since my diagnosis with EDS, I’ve also been working on obtaining diagnoses and help for the additional comorbid conditions of gastroparesis and a Mast Cell Activation Disorder, for which I clearly meet the clinical criteria.

Uncomfortable with my initial diagnoses of fibromyalgia and ME/CFS and convinced they didn’t fully explain my experiences, I was always on the lookout for other explanations. I had a lifetime of issues that only got worse with age. This didn’t seem to be true of most of the other ME/CFS and fibro patients I knew or read about who had a sudden onset of symptoms.

Early Onset of Symptoms

For me, everything started in my early teens, which I now know is quite typical of EDS “zebras.” Even before that, I was a sickly child, frequently fighting systemic infections and viruses, often struggling with allergies to body care products, perfumes and cleaning products. As a teen, I battled insomnia, fatigue and pain in my legs and feet, lower back pain, and headaches. I had a lot of stomach issues and my allergies grew worse. My periods were unbearable, with terrible cramping, hormonal fluctuations, migraines, and alarmingly heavy flows. At 19, I herniated two discs in my spine lifting a patient, only I didn’t know I had because doctors refused to do any imaging until I was in my mid-30’s, always telling me my pain couldn’t be that bad.

By my early 20’s, I found working on my feet excruciating and exhausting. I went to school to try to escape manual labor and customer service positions. While in school, I tore my Achilles tendon walking up stairs at a leisurely pace. I thought this very strange, but no one else seemed to care. Or perhaps they simply didn’t believe me, even though by then I’d had tendonitis in almost every major joint in my body. I had odd pains all over. Sometimes my joints didn’t work right and would pop and throb. It was many years before I discovered that these were subluxations, the close cousin of dislocations. The joint is still somewhat operational, but not quite in place.

Before graduating in 2003, I was diagnosed with kidney disease and started having my first symptoms of dysautonomia; heat intolerance and hydration issues which caused me to have heat stroke at an amusement park and a near heart attack during the flu. My gastrointestinal problems became chronic and I began taking prescription medication for my GERD.

I was accepted to a graduate program at the University of Cincinnati and provided with a Presidential Fellowship for my academic work. I started the fall of 2003, as I was already 30 and didn’t want to delay my career any longer than necessary. My dreams were all coming true and I was excited to embrace this next phase in my life. But I was utterly defeated within 3 weeks by the terrain of the Appalachian foothills. It seemed every class I took or taught was uphill from the last and I didn’t have the energy to walk that campus and compete as a graduate student and teaching assistant. I was forced to withdraw.

I returned to work for a company I had temped for through most of the summer. I became the executive assistant to the Vice president, a grueling and stressful position that demanded much of me both physically and intellectually and my time was entirely the VP’s. It mattered not if it was 3am or 3pm. I crashed under the weight of the physical and emotional stress and took a part time job while trying to grow a business in real estate, but both were too physical and demanding and I soon took another administrative position, this time in Human Resources with a small company. Each move appeared whimsical and strange to the outside observer, but each was to accommodate my ever growing list of health problems.

Total Disability without Diagnosis

My kidney disease resolved, but the fatigue, heat intolerance and ‘chronic dehydration’ issues did not. Despite working out, eating well and taking the best care of my body in my life, my digestive system eroded, my injuries only compiled and my back pain became constant and severe. I began having migraines at least weekly and my insomnia was a near constant companion. In late 2008, when my back pain changed and became so severe I could barely walk, I was forced to leave regular employment. I finally had surgery after much delay in late 2009.

Instead of returning to work after my surgery and recovery in 2010 as expected, I found that I was left with all over body pain, worse fatigue and the migraines that sometimes bothered me had become frequent visitors. My undiagnosed POTS had grown so severe that I collapsed in the post office in 2012 and after that, I was always at risk on my feet.

By 2013, I spent so much time with severe migraines, dizziness, nausea and vomiting, I was spending more time in my bed than anywhere else. Sometimes, my migraines would last for several days, completely unresponsive to meds, leaving me powerless to do anything but lie in a dark room with a bucket beside me. Simply standing would bring on waves of nausea and dizziness. If I raised my hands to get a dish from the cupboard, most days I would end up on the floor.

By 2015, I could hardly leave my own room unassisted and I didn’t really want to. My head pain was constant, my eyes so light sensitive I couldn’t bear to look at a computer or phone screen and my memory and concentration so poor I couldn’t even read. I languished in that bed, usually unable to sleep due to severe insomnia and pain, for weeks at a time. I was constantly plagued by subluxations, muscle spasms, and had developed tremors and yips. I vomited regularly. My body was on fire and I was under constant attack by strange symptoms. I had few drugs to help me through.

Desperate for Answers

Since I am allergic to or intolerant of most pain relievers and neuropathic drugs, I was denied sufficient pain relief. All I had to rely on was Advil, a mild muscle relaxer, and my triptans. In the face of the kind of pain I was dealing with, these treatments were laughable. By 2015, I was determined to make up for all the ways modern medicine and my doctors had failed me. I was determined to find viable treatments and prove the doctors wrong by figuring out what was really wrong with me and do everything in my power to get better.

Every moment that I could bear was spent at a computer researching and reading, trying to discover things that would help me crawl out of the deep well of pain I was trapped in and the origin of my problems. I discovered POTS and helped my doctor figure out who to send me to for diagnosis. I found antioxidants and natural pain relievers that helped some, but I never found a viable diagnosis, try as I might. I eventually learned about EDS through an awareness meme shared by a Facebook friend. I was intrigued by how well its primary features seemed to fit me and might make sense of my whole history. It took me a year to find and obtain an appointment with someone who could diagnose me, but by the time I was done with my research, I was certain I had finally found the answer.

Post-Diagnosis Wins and Losses

Diagnosis felt like a huge victory after 19 years of unanswered questions, excruciating pain, fatigue, and dozens of peculiar symptoms. I didn’t even wait for a doctor to diagnose me to start learning about EDS and how to take the best care of my condition. I joined Facebook groups and read all the research I could find in an effort to understand the disease and begin taking advantage of the copious advice available. I started following the advice of other patients and leading experts in the field of Ehlers-Danlos research and treatment. I began taking supplements, doing physical therapy and myofascial therapy to relieve pain, protect my joints and help heal some of the cognitive deficits I’d been suffering from for years. I started new medications with the help of the doctors I did have. By the time I was diagnosed, I was feeling much better.

I was so relieved and feeling so much better in fact, that I was flummoxed when I attempted to work a few hours a week driving for Uber only to fail after a few months. The short drives would inevitably put me back to bed with migraines, fatigue, and other symptoms. It wasn’t until a few months later, when spring hit and I was suddenly severely allergic to pollen (and within weeks, almost everything else in the known universe) that I put together that it was likely a mast cell disorder wreaking all of this havoc. Having dealt with an odd history of unusual allergies that sometimes went away and sometimes came back with a vengeance, I knew a mast cell condition was a strong possibility when I’d first learned it was a common comorbid condition. But I had put it on a list to address later, thinking it wasn’t such a big deal since I was feeling so much better. Of course, since putting it off has caused this cumulative and extreme effect, I certainly wish I had taken it more seriously.

As Ehlers-Danlos Syndrome and most of the other conditions I have are incurable, I will never be well. However, knowing what I have and how to treat it has been absolutely invaluable and given me more of my life back than I dared to dream. I’m still mostly housebound due to mast cell issues, but I’ve come a long way in the short time that I learned about EDS and its common comorbid conditions. I am able to read, write, draw and paint again. I can care for myself and my home unassisted and most weeks I get out to run errands and go to appointments without major payback. Some weeks, I even enjoy a nice afternoon out with my husband at a movie, museum, play, festival or sporting event.

Perhaps most importantly to me and my mental health, I get to write and feel somewhat productive again. I really enjoy sharing all I’ve learned with others, here at the Unchargeables and The Zebra Pit. It not only helps me feel like I’m paying forward all those good deeds, when others helped me find solutions for my specific problems, but gives me a sense of purpose and puts my degrees to good use. I’ve also made some pretty amazing friends along the way.

I know my future is as uncertain as ever, but I still have a lot of hope. I’m no longer bitter about the years of being denied a diagnosis or the disbelief I often faced about my illness from doctors, friends and family. I know that no matter what happens, I now have a cadre of experts, along with my own research skills and creative abilities, to help me solve whatever comes along. My future may be uncertain, but that doesn’t mean I have to live in constant fear. There’s a big, beautiful world out there I’d much rather focus on instead.

About the Author:

Capricious Lestrange writes about her chronic illnesses as Chargie of the Day on The Unchargeables.Capricious Lestrange is a former educator who loves to write. When brain fog prevented her from writing the fiction and poetry she loves, she turned to blogging and now writes about her life, her health conditions and what she does to keep them in check. She enjoys spending time with her loving husband, her adorable Russian Blue kitty and dabbling in the visual arts when she doesn’t have her nose stuck in a book. Capricious has EDS, MCAS, POTS, CPTSD, and gastroparesis.

Painting Pain through Performance Poetry: Disability Activism and Spoken Word


When first diagnosed with Ehlers-Danlos Syndrome Hypermobile Type (hEDS) I was confused. Not only was I confused with my own identity and my place in this world, but I had just found out that the cause of my moderate to severe chronic joint pain and joint instability was a rare and under diagnosed connective tissue disorder. I had never even heard the name Ehlers-Danlos until one of my teachers (who was also the liaison of my Individual Education Plan or IEP) noticed my bulky knee braces and hypermobile elbows. Because of her observations, I was able to find a diagnosis after three years of misdiagnoses. The average rare disease patient is undiagnosed for nine years before an answer is found. Three years for me was a blessing, but what was sixteen-year-old me going to do with a new diagnosis? I desperately needed a creative outlet.


I was introduced to the world of spoken word poetry by a friend my freshman year of high school, however, it was not until the beginning of my junior year that I got a diagnosis. I then wrote my first poem about Ehlers-Danlos Syndrome for the Topsfield Fair slam, titled “Scrapped Stripes”. This family friendly awareness poem was based off the infamous phrase taught to medical students, “When hoofbeats are heard think horses, not zebras.” With a couple months of editing and hard work, “Scrapped Stripes” was able to be used at Louder Than a Bomb, a poetry competition which started in Chicago and is now nationwide. That poem was only the beginning of my disability activism through words.


Since then I have written poems about flare days (“Flare Day”), migraines (“Hurricane”), mental health (“Hacked Hell”, “Hazards of a Miner”, “Asylum of Cards”, “Love Notes in Lunch Boxes”), positivity in disability (“Fan Mail to Barbara Gordon”, “Cripple Swag”, “Acceptance Letter”) and even about healthcare (“Dear Senator Warren”, “Letters From America to Insurance”). With each poem I write comes the energy to create more poetry. It’s like harnessing creative juices as if they were water and using them for energy, or in this case, activism. Passion comes from life experiences and from the heart. I am currently putting together a chapbook titled The Anatomy of a Zebra which will showcase a great chunk of my poetic reservoir. For now, here are just a few examples of how I use my voice through performance poetry to advocate for physical and mental health.


Scrapped Stripes

Badum badum  badadadum
When you hear hoofbeats, think horses, not zebras,
Horses are more common than zebras,
The science of the unknown is still science and zebras still exist, but most people have never seen a zebra in real life , so why should you believe Mulder and think otherwise?
It’s all you know.
So of course folks are going to think that zebras don’t exist,
But that would mean I don’t exist.

They’re calling me a unicorn,
an animal that was left off the ark for a reason:
Because they are lying hypochondriacs,
Always telling tall tales about their long list of symptoms that rotate daily, exaggerating fake maladies.
To them, a subtle tap is like a knife thrust
Insulting us zebras who ACTUALLY have those symptoms
Their horns continuously grow after each word they say like Pinocchio’s nose for each lie that leaves their loose lips
I may be rare but I am very real

I am screaming at doctors to look for zebras like us
But of course we get put out to pasture because horses are more common and we are mistaken for being klutzy thinned skinned unicorns: fictions.
I am screaming EHLERS-DANLOS SYNDROME, a disease where my collagen refuses to work properly
And you still assume that my collection of subluxations, bruises, and cuts are because my father abuses me until I am a black and blue rag doll with stitches coming undone when really I just tripped on the stairs at school
You still think that I am a hypochondriac because there is no possible way I have a chronic illness when I look just like you,
No way I can be ill because I am out living life and not hanging from a noose of wires, tubes, and monitors.

Yes I know that I am a contortionist in the Cirque Du Soleil
Acrobatics may seem like fun, but it hurts
Yes my skin is really a velvet canvas painted with brush strokes of bruises and scars
Yes my body is glazed with fatigue like a Christmas ham gone wrong.
And yes EDS is a real condition
I did not make that up.
Even if doctors need Google to understand it.
Wikipedia being the instruction manual for the cheap broken toy called me.

I wish that they could just understand that I am not a fraud but a human being who happens to have an invisible illness.
An illness that doesn’t define who I am, but teaches me how to be strong.
There will always be wolves cosplaying as sheep
And I will have to fight them off if I want to survive

Badum badum  badadadum
Hey look mommy!
A zebra!
Wow, you’re right it is a zebra.
And that’s one bad ass mother flower fighter right there.

Cripple Swag

I am the epitome of everything beautiful
Awesome rushes through my veins
And I have never felt so radiant
The secret to this youthful glow?
Ehlers Danlos Syndrome
That’s right
A chronic illness
A silent ticking time bomb is the key ingredient in the making of this sexy badass
That’s right
I see you
I hear you
I know you’re jealous of my cripple swag and the way I walk the halls as if it was a cat walk
My cat walk
Because honey, I own this penguin waddle
I know you envy that I have in my possession the key to the elevator
So I can get to my classes fashionably late and in style
And teachers don’t care if I have a pass or not
With a wave of my key they nod with a smile
I am worth interrupting class for
Like Pavlov’s dogs you drool when you see me
Because my physique is the meat you’ve been craving to eat
Skin velvet soft to the touch
Beautiful almond eyes with a touch of blue sclera to accentuate my grayish blue irises
My double jointed skeleton sweeps you in like a siren catching its dinner
Knocking you unconscious with every snap, crackle, and pop
You only dream of surviving being in bed with me
My glasses and orthotics are fashion accessories
Complementing my trendy attitude
And baby,
Don’t get me started on my perks
Preferential seating at every single concert
First class treatment
Wishes coming true by the rub of an oil lamp
The nurses know me on a first name basis
Because I am just that damn popular
So I dare you to call me worthless one more time
Tell me I am a burden
Because I am not
I am just a package too awesome for your dirty hands to handle.


Flare Day

My bone marrow is a sponge seeping with fire ants pinching my nerves in synchronization to my
Overworking muscles and tendons compensating for bones who slack off and leave the work for others to finish
The 9 to 5 agenda need not apply to them

Joints that are made of rice krispies
Just add milk to hear the snaps, crackles, and pops of pain and dislocations with each extension
The song of my people plays loud inside me
Swaddled in barbed wire
Steel spokes scraping my skin
It demands my full attention like a tyrant overruling my body
And to overthrow the government with focus would just be blasphemy

I just want to focus
Have my mind analyzing the board and
understanding the lecture
But only my eyes seem to want to engage
My brain choosing to inflate with oxygen like a balloon instead of listening just to be sucker punched repeatedly by small laughing children
Snickering at my inability to function
My head too heavy for its pedestal
Wanting to detach from its velcro mount so it can roll freely on the floor

Weights hanging off from my arms like ornaments on Christmas tree branches
Lighter ones on my shoulders leaving the heavy meaningful bulbs for the end of my fingers
My stomach braiding ropes to support my spine so it may be used as a punching pad for training MMA fighters
Claws clenching down on my ankles and thighs to keep my leg stable as a saw carves around the kneecaps
My flat footed foundation deemed weak,
Allowing for my garbage body to crush my toes
Yet you call me a lazy millennial for closing my eyes

I am not lazy
I am a worker bee
Waking up
Going to school
Pushing through constraint seating
Educating myself
Playing with words
Playing with cameras
Taking care of my broken body
The day I stop working is the day I stop buzzing is the day I stop breathing is the day that I die
And though I can’t focus
I refuse to die



About the Author

Hana is a 19-year-hana photoold college student with Ehlers-Danlos Syndrome & Co who uses her passions of slam poetry, photography, videography, writing, and music as a platform for self advocacy and disability activism. She is a strong believer in removing negative stigmas of disability and spreading awareness. As a new member of The Unchargeables Twitter team, Hana is excited to get to know all the chargies and help make a difference in this world. 

Grieving Through Ehlers-Danlos Syndrome

heart, breathing problems, thyroid, hashimoto's, Grave's, hypothyroid, hyperthyroid

The grief cycle, as in following the death of a loved one, is something that we are probably all familiar with.  The same thing happens when we are hit with a diagnosis that changes our lives, and my life changed drastically when the chronic illness diagnoses started rolling in and in the years previously when no one knew what was wrong.

Before The Diagnosis


As a teenager, I was a dancer: ballet, tap, modern, and Irish dancing. I played netball and hockey, loved trampolining, and either cycled or walked two miles to and from school every day.  On the surface, I appeared fit and healthy.

Yet I was constantly being labeled as clumsy due to a catalogue of weird injuries resulting in the constant annoyance of the school matron and many trips to either the minor injuries clinic or the emergency department.  During secondary school, I was displaying even more strange symptoms.

By the time I reached my GCSE years, I was fighting kidney, throat, and ear infections more often than I wasn’t.  I had periods of extended, unexplained dizziness and my joints (in particular my fingers and right knee) frequently started to have a mind of their own.

Things went even further downhill when I was in 6th form that I have a gap in my memory.  I have actually “lost” about six months of my life.

During that period of time, I was in so much pain and needed such a combination of medications to deal with it at age 18, while I was battling through A Levels, (despite being told to take a year out) that I can’t remember taking my final A Level exams. Which isn’t necessarily a bad thing to be honest, but I’ve lost a lot of other memories which would have been nice to have.

Because no one was looking for Ehlers-Danlos Syndrome (EDS), I remained undiagnosed until the age of 22.

The Knowing


You would think that because of all of this, getting a diagnosis of EDS, along with the added bonus of fibromyalgia at the age of 22, it would have been a relief. It was. Sort of.

I finally had reasons as to why I felt so rubbish at times.  And I wasn’t imagining my joints popping in and out,  it was actually happening.  I wasn’t being pathetic when I was ill, I do have a weak immune system.  The pain wasn’t in my head, it was real.

But at the same time the rush of relief at being told I have a diagnosis hit me, a door was being shut and locked on my past life. You see, I was being told I have life-long illnesses which are probably going to get worse.  Which brings us back to grief.

I hadn’t ever considered the fact that I was going through a grieving process for my healthier teenage years.  It wasn’t until my physiotherapist pointed out that I was going through a big adjustment in how I lived my life and that I needed to take time to come to terms with that.  I needed to grieve.

I struggled to get my head around that concept initially.  I wasn’t dead and I wasn’t dying.  However, I wasn’t going to get better either.

I was no longer “ME”.


denial sign

Personally, I haven’t found the grieving process for my old life linear.  Some days, I can be rational and logical about things.  Other days, I can sit and cry and mourn.  At this point, the latter is becoming more rare.

Still, sometimes, I can’t make sense of what is happening.

There are times I am numb to all my feelings surrounding chronic illness and I like to think that it isn’t there.  There are days when this thought process makes life possible.  It allows me to get from one day to the next with as little fall-out as possible.  I know this denial isn’t always healthy, but I see it as a basic survival method.  And it is a component of grieving.

At times, I have pretended that I’m not ill and if I’m honest, that doesn’t tend to end very well.  I still struggle with the fact that I am not the same as my friends.  Because of my denial, I can be reckless, not pay attention to my body, and overdo it, which results in me ending up in bed needing to recover.


words anger

I try not to go down the “why me?” route.  It’s a dark hole. But being the only person in my family with EDS, it’s still hard to get my head around why exactly it did happen to me.  And I’m not an angry person.  It takes a lot for me to feel anger about a situation.  I don’t really like the sensation of being angry.  But EDS has changed that too. There are times now when I could happily go on a rampage, screaming and swearing about how unjust everything is.

And a sure-fire way of triggering my anger is making uneducated and insulting comments about chronic illness around me.

Do you think that I’m lucky having afternoon naps or needing to spend the day in bed?  It is natural to feel deserted and abandoned the majority of the time when we are sick.

We also live in a society that fears anger, but I see anger as strength.  It can be an anchor, giving temporary structure to the nothingness of loss or overwhelming change.  Such as the change EDS brought to my life.  This is something that can’t ever be answered.  The “Why me?” thought process is totally natural.



While I was going through all my undiagnosed symptomology, I found myself bargaining, mainly with myself, as a way of preventing a possible earth-shattering diagnosis.  I was in a very conflicted place; both wanting a diagnosis and fearing it.  I decided that if I looked after my body better, I could stop myself from being unwell.

So I would swim every day, eat clean, take all the supplements recommended, and actually listen to what my body was telling me.  I wanted to go back in time and not dance as much or do the sports which put unnecessary strain on my body.

But finding fault in my own actions and choices as such were not the reasons that I developed EDS.  I can thank gene mutation for that.  Maybe my joints won’t suffer quite as much as I get older if I didn’t do the things I did as a child,  but I enjoyed dance so I really try not to view it as something that I regret.



At some point, I realized I was having periods of depression.  The depression stage of grieving feels as though it will last forever.  At the moment, I think this is the stage that I keep revisiting.

It’s important to understand that having depression around a diagnosis is not the same as the depression of mental illness, though there is no shame in either and neither should be taken lightly.

The depression we feel after a diagnosis is an appropriate response to a great loss or change.  At times, I’ve found myself withdrawing from life or left in a pit of intense sadness.  Chronic illness can feel like a life sentence.  The daily uncertainty is scary.  I can’t predict how my body is going to feel or how much pain I might be in from one day to the next.

I’m not a flake but it sure seems that way.  I will make plans.  But then I’ll need to cancel plans because I’m too unwell.  But, due to the fact that I don’t ever look ‘sick’, it tests every person you know.  It takes a very understanding family or group of friends to pull you through the depression.



The final stage of grieving is acceptance.  Acceptance is often confused with the notion of being “fine” or “okay” with what has happened, or with whatever caused the grief in the first place.  This is not the case.  I don’t think that I’ll ever feel fully okay about my diagnoses.  And I definitely don’t like my new reality.  But I’m learning to accept it.  I’m learning how to make living with it easier.

Having friends who are going through something similar helps so much.  They understand on a level that no one else does, or ever can.  Along with this, I have learned that not everyone will get it.  And that that’s more of a reflection on them than it is on me.

Now, whenever possible, instead of denying my feelings, I listen to my needs and I adapt my lifestyle.  I continue to be able to live. Just with a different set of goals and dreams.  Yes, I am not the healthy person that I was ten years old.  But slowly, I am adapting to that.

About the Author:

Laura was diagnosed in April 2015 with Ehlers-Danlos Syndrome and fibromyalgia; since then reactive arthritis has been added to the list. She also has various mental illnesses for which she is about raising awareness and reducing some of the stigma held over mental and chronic illnesses.  Laura is using this opportunity to talk about about being a spoonie. She blogs about what life is like as a professional sick kid at Confessions of a Zebra.

Ehlers-Danlos Syndrome and Me

Dena writes about Ehlers-Danlos Syndrome at The Unchargeables.

Hi! My name is Dena and I have hypermobile Ehlers-Danlos Syndrome, or hEDS. There are several different forms of EDS. The most common types are hypermobile, classic, & vascular. There are several other forms that are fairly uncommon and quite severe.

The one thing all EDS patients have in common is our collagen is malformed at the molecular level. This means the “glue” that holds us together doesn’t work. Because our collagen is malformed, taking a supplement will not help our bodies fix it; we will just make more broken collagen. My form of EDS, hypermobile, shows itself primarily through extremely limber joints.

My Ehlers-Danlos Syndrome Story

Like many others with a rare disease, I did not get diagnosed quickly. As a child I was often told that the pain in my legs and hips was growing pains and to quit whining. When I got a little older and seemed to be constantly spraining my wrists and ankles and my knees were doing all kinds of weird things, I was called an attention seeker.

It wasn’t until my mid-30s that people started taking me seriously. I kept winding up in physical therapy and the physical therapist noted I had almost no stability in my hips whatsoever. My chiropractor at the time also commented on how hypermobile I was and that I needed to be really careful about losing strength because when I lost strength, my joints would dislocate easier. At this time it was also mentioned that my chances of successfully having a child were slim due to the excessive laxity in my hips and the danger that presented to the baby and to myself.

Shortly after this time I met somebody with EDS who recommended I join her online support group. I joined the group, eventually going to the physical meetings and met others with this condition. This led to several people saying I needed to be evaluated. So, finally having hope of an explanation for why I had seriously messed up joints, I went and saw a neurologist who specialized in EDS.

EDS Diagnosis

He did a number of physical examinations that demonstrated my joint laxity and asked me a lot of questions. The appointment lasted well over an hour. At the end of it, I was diagnosed with hypermobile Ehlers-Danlos Syndrome. Suddenly there was an explanation for all of those sprained ankles and wrists. There was an explanation for why my knees were so bad that coming home to an 18-step staircase seemed insurmountable some nights. It even explained other things. Because our intestines are also made of collagen, many people with EDS suffer with severe chronic constipation. Our guts don’t move. I saw a gastroenterologist and slowly started to make sense of things. That’s still an ongoing battle.

Pain Management

Resting from a flare of Ehlers-Danlos Syndrome.Since my diagnosis I’ve seen lots of specialists. I have to see pain management regularly because this is an extremely painful condition. It leads to having a lot of arthritis throughout your body, so holding your joints together hurts and the joints themselves hurt. It can be all-consuming. Good pain management is essential. That’s the thing that I would emphasize the most about this condition: if you have it and don’t have good pain management, do whatever you can to find it. Good pain management means the difference between being immobile for days versus having good and bad days. Yes, some of those bad days mean days spent in bed because the weather is bad and you are in a terrible flare. But it also means that there will be good days and you can go outside and enjoy the sunshine.

Physical Therapy and Bracing

The last thing that I would encourage people who think they may have this condition to be sure to look into is proper bracing. Physical therapy and bracing help reduce pain enormously. They also help reduce damage to the joints. I wear giant leg braces that go from mid-thigh to mid-calf so that I can walk safely. When I was first diagnosed I didn’t imagine my knees to be bad enough to need these giant braces. The person who assessed me for the braces laughed. It’s amazing what you learn to deal with when you don’t know any different.

Thanks to the EDS diagnosis, I now have splints on my fingers that make it use easier for me to use my hands; it’s easier to hold a fork without my hands cramping. I have thumb, wrist, ankle, and shoulder splints because they are pretty mangled from years of being a farm kid. That’s pretty much true for most my joints. Being a raucous farm kid did not make adulthood with EDS any easier, but was a good time when I was a kid. I’m glad I had those experiences when I was able to. But I would not try to climb a giant tree now!

Mental Health

It can be really isolating having a rare disease no one has ever heard about. It is extremely frustrating living through situations when all of the doctors who don’t know about it call you a hypochondriac. Even after diagnosis, physical therapy, braces, meds, the whole gambit, there will still be times spent in bed due to pain. It is isolating. It is depressing.

Being fully disabled young is not easy to cope with as an American, or probably for anyone. This is why we have online support groups like #Unchargeables. To make the hard times a little easier, to break the isolation, to find people with similar conditions and concerns. Support groups are vital. Therapy is also important and I encourage anyone who feels like they may need it to seek it. There is no shame in seeking out help.

For more information, visit The Ehlers-Danlos Society.

Dena writes about Ehlers-Danlos Syndrome at The Unchargeables.Dena is a medical zebra, meaning she has at least one rare condition. She suffers from hypermobile Ehlers-Danlos Syndrome, mast cell activation syndrome, POTS, asthma, degenerative disc disease, systemic arthritis, TMJ, seasonal allergies, probably Sjögren syndrome, and possibly more. She was a rehabilitation counsellor and mental health counsellor for a number of years. Dena now volunteers with several support groups.