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The 10 Realities of Living With Ehlers-Danlos Syndrome as a Teenager

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In April of this year I became very sick with fever, bloody urine, horrific flank pain, extreme fatigue to the point of not being able to stand, and severe nausea. I was bedridden and in and out of the ER and children’s hospital as well as Mayo Clinic in Rochester for four months. I had multiple ultrasounds, procedures, scans, IVs with various meds, X-rays, MRIs, nuclear tests, and general labs until a rheumatologist finally pieced together what was happening. She messed with my joints and evaluated all of my tests and symptoms. She found it strange that even though none of the results were extremely abnormal, every test was still a little bit abnormal. My left renal vein was slightly compressed, but not enough to call it Nutcracker syndrome yet. I discovered I had a cyst on my left kidney, and the basement membranes of my kidneys were almost nonexistent. I also realized I have an IgM deficiency. It was very strange. After examining me, she told me I have a score of nine on the Beighton scale. She connected my dizziness and heart symptoms to EDS as well as my joint pain and stomach problems. She also told us to be aware of costochondritis. It was a relief to have a diagnosis, but also a curse. I was told I may never be in marching band again and running was out of the question. I’m relatively active, so this was hard to hear. Even after that diagnosis, I’m still being evaluated for new symptoms by other physicians, so it’s hard to face that this journey is far from over. Now, what is it like to live with these issues while balancing school, social life and potentially a job? You’re about to find out.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

1.) Getting out of bed.
“Migraine again huh? I’ll call your school.” — my mom almost every morning.

The sound of the alarm going off at 5:00 a.m. gives me an instant migraine before my eyes even open. I can imagine the look on my mom’s face when she hears her phone ring and sees it’s me. My migraines are horrific, but I’m so stubborn that I won’t ask for help when I know I need it. The things that help most are sleeping on ice, and unfortunately, missing at least the first two hours of school. On the days I wake up and no migraine begins, the next biggest task to face is my morning routine.

2.) The “before school” routine.
“You need me to help you shower?” — my mom most days.

I shower every morning which helps to bring me to my senses and usually causes vertigo to set in. I’ve had multiple shower falls because of it. It also wakes up my joints, but man are they angry. Getting dressed involves wincing at the bends of knees and lifting my arms above my head. My 20-minute makeup routine has my legs shaking from standing at the mirror for that long. When these things are complete, it’s time for school.

3.) Walking the halls of school.
“You look like a 90-year-old lady climbing those stairs.” — random kid in the hall.

The first place I have to go to school in the morning is upstairs to my locker. Each step I can hear my bones popping from the inside out and I often find myself getting hip subluxations from the flights of stairs. My guidance counselor has helped in making it not quite as challenging, by placing all of my morning classes on one floor and my afternoon classes on the other. She also offered me the conference room as a safe haven when things just get too tough.

4.) The reputation.
“I’m pretty sure I’ve seen Megan about seven times in my life.” — a new kid in my government class.

Who am I? The sick kid. Who will I probably be the rest of my high school career? The sick kid. I’ve lost many people in my life, but have also gained others because of this ideology. I’m the last person anyone wants for their group project because I’m consistently gone for hospital trips and just sick days in general. The only time I’m treated differently is when I’m admitted in the hospital or in the ER, but why am I there? Because I’m the sick kid.

5.) School events.
“Come on Megan, you can do this!” — me, convincing myself of the impossible.

My nerves are always on end. What happens if I get sick? What happens if my knees collapse? What if I need to leave? Every event is filled with constant worry of whether or not I’ll be able to make it through the whole thing, so that brings on the social anxiety and panic attacks. Despite this, I try to make it to what I can and surround myself with friends who understand and see the signs so they can help me push through it.

6.) The other social aspects.
“Wow, you’re still alive?” — everyone that doesn’t know me personally.

EDS had made me lose many connections with old friends, but has helped me gain one. I have a best friend that I share EDS in common with and we are there for each other. Though she may be my only close friend, I wouldn’t trade her for the world. My school friends reach out to me when they see I’m getting worse or absent for a week at a time, but other than that many of my peers leave me alone. That’s OK; I’ve become accustomed to it.

7.) Doctor’s appointments.
“Woohoo road trip… to the hospital… again.” – my mom trying to make an the fact I’m about to get an IV sound fun.

I have multiple appointments a month with a variety of specialists who are continuing to figure me out. My appointments are sometimes in my town, but usually in the University of Iowa Children’s Hospital or Mayo Clinic. I miss school for this, not to mention the disease itself! Some of the nurses know me by name as I’ve become a regular, and I know the hospital like the back of my hand. My immune system has been weakened by different medications, as well as the isolation itself.

8.) What I’ve lost.
“So can I still do marching band?” “That’s out of the question. No.” — Dr. Hong

I think EDS has taken away many of my joys. I can’t play in marching band. I can’t go to school on a regular basis. My weight is troublesome. I can’t eat or sleep well. I can’t do too much or travel too far. I’m not as mobile or balanced. I’ve lost friends. I’ve lost some everyday freedoms I’m hoping to gain with a service dog. I’ve lost a lot, but I’m still very optimistic.

9.) What I’ve gained.
“How has this experience made you literally the sweetest person ever?” — my best friend.

I’ve learned to be generous and selfless. I never want anyone to feel this physical and mental pain, so in return I’m constantly giving anything, from material items, to love, to whomever I can. I want the world to be happy. I’ve learned my limitations, and have also acquired a higher pain tolerance, so I’m capable of accomplishing what others may find impossible with this disease. I’ve gained lots of unexpected love and support from the people around me. I’ve also gained perspective on life and how easy it is to take for granted. It’s hard to remember what normal feels like, but I’ve managed to create my new normal.

10.) My future.
“You’re gonna make a great doctor someday.” – my biology teacher.

My future is still uncertain. I’ve accepted that I won’t be able to achieve all of my goals which took a few months. I’m still seeing other specialists to look over other issues, and I’m really looking forward to the possibility of needing a colonoscopy in the next couple months. This experience has taught me new values and helped me discover what career I’d like to pursue: pediatric oncology. I love the versatility and the emotion of the disease. You can pretty much take it wherever you want, and I love working with kids. (I’m a Sunday school teacher of 4-year-olds right now.) I’ve been offered many scholarships already because of my high grades that many are surprised I have. No matter what happens, I’m not going to let my illnesses get in the way of my dreams, and I encourage others, regardless of their issues, to dream big as well!

Lead photo source: Thinkstock Images

Originally published: November 15, 2016
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