Interview #20: Haley Chico (Ehlers-Danlos Syndrome)
After 12 years without an official diagnosis, a 25-year old woman shares her story about how chronic illness impacts her life moment to moment.
I met Haley through our church when we moved to the Harrisonburg area in 2012. I kept hearing about the Chico family and how fun they were and as we were slowly getting to know people in the community, we were able to meet them. We soon realized that Haley (the youngest child of 5) had been dealing with a complicated chronic illness for most of her life.
Her Journey
At age 7, Haley had a bicycle accident that caused some trauma to her brain. Two years later she started experiencing neurological symptoms of something being wrong.
Haley experienced a lot of headaches, neck pain, back pain, plus nausea and vomiting. Due to her close proximity to several big hospitals, she went to Johns Hopkins and The University of Virginia for tests seeing specialist after specialist. Unfortunately, tests came back negative and medications just weren’t helping. At age 12, doctors just started not believing her symptoms. They kept staying that she was drug seeking and her parents were enabling her because she looked fine and tests weren’t conclusive. This resulted in a lot of traumatic memories due to all of those situations of not being taken for her word. She even began to think that maybe this was all in her head, but she knew she was in pain.
Until the age of 21 she struggled without an official diagnosis. She would also pass out uncontrollably, maybe 80–120 times a day. This occurred every time she’d sit up or stand up. At this point she had gotten a hospital bed to sleep on the main floor and was using a wheelchair because she would just randomly pass out and had fallen many times, even down the stairs. Through the encouragement of her family physician, they contacted a neurosurgeon in Maryland who specializes in Ehlers-Danlos Syndrome (EDS). Dr. Fraser Henderson ordered a CT and MRI before the appointment and put them up on a big screen in his office for them to review. He immediately circled areas in her brain and spinal cord that showed abnormalities and where vertebrae in her neck and back had shifted, which he believes was causing all her symptoms. He diagnosed her with EDS on the spot. Later she went to a geneticist to get an official diagnosis as there is no blood test to confirm EDS, it is a clinical diagnosis.
She goes on to explain that Ehlers-Danlos Syndrome is a connective tissue disease and a collagen disorder. Everything in her body is very flexible and stretchy, including ligaments, joints, and sometimes your organs (depending on the type). Things basically slide around and move in places they shouldn’t be. She can also develop other types as she ages. She has the Classic EDS, but is wondering if she’s developing the vascular type. She says that many people are probably living with this diagnosis and probably don’t even know it.
The combined prevalence of all types of Ehlers-Danlos syndrome appears to be at least 1 in 5,000 individuals worldwide. The hypermobile and classical forms are most common; the hypermobile type may affect as many as 1 in 5,000 to 20,000 people, while the classical type probably occurs in 1 in 20,000 to 40,000 people. Other forms of Ehlers-Danlos syndrome are rare, often with only a few cases or affected families described in the medical literature.(Source)
Dr. Henderson also diagnosed her with Arnold Chiari Malformation which was visible on the MRI. Most of the time the Arnold Chiari Malformation is a diagnosis in itself, but hers is considered a symptom of EDS. This other malformation essentially means that her brain was beginning to descend out of her skull through the foramen magnum (the hole in the bottom of the skull where the spinal cord connects to the brain) because her brain has too much collagen and was slipping through. So this was causing her brain stem to bend and was why she experienced frequent passing out episodes.
Dr. Henderson is a Neurosurgeon EDS Specialist and is 1 of 4 in the world. At the end of her first appointment he looked at her in the eyes and said, “By the way… you’re not faking.” This was a pivotal moment for her as she had spent so many years without doctors believing her and coming up short in a diagnosis. He recommended she have surgery as soon as possible to secure her brain where it needed to be, including a fusion from occiput (back of the head/skull) to C2.
In June of 2013 I had a very large surgery where he… I remember he used the word hoist, he said ‘I’m gonna hoist your brain back where it needs to be.’
She had a 6–8 month recovery and was miraculously symptom free for a year and a half. It was the first time since 9 years old that she actually felt “normal”.
I always say, I don’t remember what it’s like to not be in pain. I don’t know how to live without being sick, it’s kind of a weird thing, it’s all I can remember.
She was in excellent shape and was able to get back to many activities that she had to skip out on for so many years. She was driving and working, she also got back involved in theater/musicals and was even learning how to tap dance. She unfortunately started to deteriorate and her symptoms began to return. This was extremely difficult physically, emotionally, mentally, and spiritually to have to experience these symptoms again after a period of relief.
EDS does not have a cure, it is rare, and it’s essentially about treating the symptoms, which usually involves undergoing surgery to fix areas that are out of place and provide relief.
Not many doctors know about it. Like I’ll go to a hospital and if I’m in the ER and they’ll say, “What kind of medical conditions do you have?” and I’ll say “Ehlers-Danlos Syndrome” and they’re like, “How do you spell that? What is that?”… They’ll literally take their phones out and look it up! So I have to explain it to my doctor, which is weird.
What was it like to go through school with EDS?
Since Haley started to have symptoms at 9 years old, she and her family still had to find ways for her to complete her education.
It was incredibly difficult. I missed all of my 4th grade year, half of my 6th, half of my 8th, all of my 9th, all of my 11th, and half of my 12th. I graduated on time miraculously.
She went to a private school and with a supportive family who helped her get through. She also had some ladies at church who would help tutor her as both of her parents were working and couldn’t homeschool her. Her dad was a math teacher and he helped her through a lot as well.
Life at Home
Haley was living in her parent’s home until age 24. When things started to get really difficult with lots of fainting, they had a ramp installed to get inside the house as there were several steps to get in. Because her bedroom and all full bathrooms were up on the second floor, they rented a hospital bed and put it in the living room because it was just too dangerous for her to go up and down the stairs. She had definitely experienced rolling down the steps and getting several concussions. Haley remenises… “It was a bit of a zoo.”
They had home health nurses come and give her daily meds, OTs and PTs came in for therapy, and people assisted in helping her get bathed and dressed in the bed. She talked about the creative ways they were able to help get her clean and wash her hair right in the bed. The wheelchair would not fit into the half bath on the main floor and because she would pass out every time she sat up or stood up, the few steps through the door and through the toilet were tricky. She had to have someone with her as she would just faint and fall to the floor.
Her parent’s home is a very common set-up with all bedrooms on the second floor. Their family just had to make do, like many families do, with how their home was designed. Turning their living room into a bedroom was their only option. Can you imagine them going through construction in the midst of Haley’s unpredictable health? There wasn’t a door to close for privacy, and she needed assistance with all of her daily tasks.
Once she became more stable, she was able to get out on her own and into her own apartment. It’s all on one level and her parents are just a few miles away and she has friends close by as well. Haley states,
It was a sign of my independence, and that was really… it was a huge moment. I just sobbed the whole that first day when I got the key, I just sobbed, because it was this monumental moment. I was driving, I was in my own apartment, I have a dog. It’s just amazing how things can change.
How EDS impacts life daily
Weakness is a big issue. Haley describes a situation when she was at Target and an older woman told her that she needed to save the accessible spots for people that really need it. She felt like she was punched in the stomach. Since she doesn’t necessarily “look” sick it’s difficult for people to understand that she tires easily and needs different accommodations and conveniences. She often times sits in a motorized cart or pushes the regular cart for stability. There have even been times where she was in the back of the store and ran out of energy and had to sit on the floor and wait for her mom to come get her because she didn’t have the strength to make it back to the checkout and out to her car. She wishes they’d put more benches around big businesses so there are places for people to rest if they need to.
The pain is the same today as it was 12 years ago. Her condition is chronic and only gets better through management of her symptoms. Even though she’s learned coping mechanisms it is a daily struggle to push through the pain and manage daily tasks.
Even though she looks good, it doesn’t mean she feels good. She gets used to putting a smile on and pushing through even though she’s in pain. She may have been in the ER the night before or just finished vomiting in the bathroom. She doesn’t want her reality to be dismissed even though people see her “put together” on the outside.
Her health status can change very quickly. She could be at a social function one moment, and then the next begin vomiting and have to go to the ER. Haley remembered a quote her doctor shared with her one day when she was overwhelmed by her ever changing health. She says many people say the phrase, “take one day at a time,” but her doctor told her to, “do the next thing.” It gives her strength to not look too far into the future, but focus on the next tasks at hand.
Driving isn’t always guaranteed. When she was passing out she couldn’t drive, but now that she’s not passing out, she can drive more often. Sometimes she calls an Uber based on how she’s feeling or she’ll call friends and family for rides. She has taken a taxi home in the middle of the night when leaving the ER. The rule is that she isn’t able to drive for six months after an episode of passing out, so she always has to be cleared from her doctors to drive again.
Participating in the community with leisure and recreation
She isn’t able to participate in the same type of activities as her peers. Very active tasks like ultimate frisbee, volleyball, and roller coasters aren’t possible due to her weakness, and she also has to be aware of bathrooms close by in public places or crowded events because she often needs to throw up or take anti-nausea medications via a shot. She recently took a trip to Dollywood with a friend, and it was so unexpectedly difficult due to all of the walking. She was frustrated about how tired she became throughout the day.
She also has medical devices that aren’t able to get wet. The feeding tube in her stomach, as well as a Hickman (large IV that goes into the ventricles of her heart for her to easily take medications) are essential for managing her symptoms. This limits her activities when hanging out with friends like going swimming at a lake or pool. She also has to take baths vs showers so she can keep these areas dry.
I do find that it’s a constant battle of what’s gonna to be best for me emotionally and what’s gonna to be best for me physically. So sometimes I have to say no because I can’t do it physically. But other times I can’t, I mean I need to be with my friends and I need to be with people that it’s worth the risk of the physical distress that it may cause to be with them doing whatever activity they may be doing… for my emotional health.
Advice for interacting with her or others with EDS
She’s very open to answering questions about her illness and would love if people would even research the illness to learn more about it.
She also doesn’t want to be treated as if her value, worth, or identity is the illness. Since her disease is rare, it can be very isolating, so she appreciates people listening to her and taking her at her word. Comments like, “well you look fine,” is frustrating for her.
In another breath, she wishes there was more awareness about EDS. There have been times in a store where she faints and they call 911. It’s something that they should do (and are probably legally required to do), but it’s such a common occurrence for her that it’s difficult sometimes when people freak out. It’s a balancing act because she doesn’t expect others should instantly know what’s wrong with her either because everyone with EDS is different and it’s so rare, but she wants people to listen and take her at her word.
Relationships
In our organization, we often say that illness and disability doesn’t affect just the one person, it impacts everyone. Haley agrees that even though she’s the one that has EDS her friends, family, church, and everyone she comes into contact with can feel the effects, positively and negatively. EDS has impacted her relationships in a very big way and that has even changed interactions with her siblings.
What do you want others to know about you?
She loves musical theater and singing. Most people know this about her, but it brings her so much joy!
She discusses that it’s a difficult thing to love because with this illness, it’s really impossible to participate in a production with her constant ups and downs health wise. After her surgery back in 2013 she had the opportunity to get back and perform in three productions. She also likes to sing at church and weddings and wishes people saw this as a part of who she was, and didn’t see the EDS as the main identifier.
Haley also shares a wonderful testimony of how her relationship with Jesus has become some much deeper due to her suffering.
I get to see God through the lens of suffering, and I think that’s really a glorious thing. Suffering is at the heart of the Gospel.
She always saw herself going to Mexico to do long term mission work, but has realized that God has sent her in the mission field in the form of her illness. She’s brought nurses to church, and has many people ask questions while she’s in the hospital reading her Bible or listening to a Christian song. People often wonder why she’s so joyful in the midst of suffering and she sees it as a honor to be able to share about Jesus while she’s in waiting rooms or hospitals. She jokes that the intensity of her illness breaks down barriers for conversations, as others may find it more difficult to share the Gospel with others.
When I first contacted her about sharing her story, she was so excited because she wanted to bring more attention to EDS and the complications that so many deal with in isolation. I appreciate her candidness and I know she appreciates you reading and listening to her journey with EDS in hopes to learn more. As you’ve observed, Haley’s story is unique and she’s still in the midst of the effects of EDS. At the time this blog is being published, she just underwent a large brain and spine surgery in hopes of reducing her symptoms. So far her nausea has not returned, which has been a blessing and a goal of the surgery!
P.S.: If you’d like to share your story, contact me: sarah@universaldesign.org and we can set up a time to talk!
