May Awareness Month: EDS and my life
May is national Ehlers Danlos Syndrome awareness month. EDS is a genetic connective tissue disorder that affects many different body systems. The international symbol for EDS is the zebra. EDS is a rare disorder, like a zebra is rare compared to a horse.
I struggle with a hypermobility syndrome, most likely hypermobile EDS. Most of my joints move beyond a normal range of motion, causing injury and chronic pain. I also have gastrointestinal symptoms, respiratory symptoms, and eye problems. I have made a list of some of the ways EDS affects my life. I especially struggle with severe chronic pain. I want to help raise awareness of this syndrome for better medical treatments and public understanding.
1. My bendy joints help me to move.
My joints are flexible, and I have always enjoyed stretching and yoga. It is easy for me to get up and down from the floor. I am quite comfortable sitting in lotus for meditation. My hypermobile ankles give me a good, strong kick when I swim. Swimming is one of my favorite exercises, soothing my sore body.
2. Sports injuries are a constant struggle for me.
My hypermobile ankles and feet hurt when I run. I have suffered countless sprains because of the weak connective tissue in my ankles. Sometimes I sprain while walking around during my daily life. I have undergone complicated ankle surgery that left me still in pain. I have spent years in physical therapy. But I can rock a pair of crutches! Ehlers Danlos means that some days I walk and look normal, other days I have to use crutches or a cane to get around.
But still I love to run. I love the colorful energy of road races. I love the peaceful beauty of running in the woods. I tolerate the sports injuries and pain to keep running.
3. I enjoy work
I love my job. I work as an early childhood educator. I enjoy playing with the kids, teaching them, loving them, watching them grow. Education is a rewarding profession. I use my creative talents and imagination every day. The children love me for who I am. They don’t judge me on the days that I limp or have to use wrist braces. Kids know that we are so much more than our bodies.
4. Work is a daily struggle
As much as I enjoy teaching, my job demands a lot from my body. I walk, run, dance, jump, stretch, lift and move all day. Moving is good to keep my muscles and joints healthy, but I get tired and sore at the end of the day. Repetitive lifting causes me chronic tendonitis and muscle spasms. Many times I go home and cry from pain at the end of a work day.
I work so hard and pour my whole spirit and soul into teaching. But I have lost jobs because of pain. I need my employers to understand that I am capable and willing to work through pain. I want to raise awareness of EDS and other chronic pain conditions in the workplace. We teach our children about inclusivity. We also need to include adults with pain and other challenges into our work communities.
5. Chronic pain increases my spiritual and creative awareness
I have suffered from pain since I was a child. My parents told me I only had “growing pains.” They did not believe the hurt. I escaped my pain by turning inward, to the world of my imagination. I wrote fanciful stories in my journals. I wrote about animals and the environment and a world without pain or suffering. I prayed with a child’s innocence for healing of myself, my family. I prayed for the healing of the whole world.
During my teenage years, I channeled my creative energy into music. I imagined entire worlds and story lines in my clarinet etudes and solos. I experienced spiritual highs playing in band and orchestra concerts. I was in good company. Many creative people have experienced physical and mental pain from various disorders. Musicians. Composers. Writers. Poets. Saints. Mystics. Immense pain can birth immense spirituality.
6. Pain silenced my music
The pain in my wrists and hands began during high school. My hypermobile joints struggled through the hours practicing my clarinet each day. Repetitive motions are hard on my joints. I used ice, heat, and pain medicine to follow my musical path into college. Doctors, not knowing what was wrong with me, told me to stop playing. I took a couple of months off, but I refused to quit. I packed bravery into my music bag, hidden behind a smile. I carried my broken body back into the practice room.
The music sang forth from my instrument and my soul. My physical body cried out. My elbow muscles spasmed while stabilizing my loose wrists. My upper back muscles spasmed while stabilizing my shoulders. Hand therapists made me splints that eased my hand pain. The swimming pool and hot tub eased my back pain. But eventually I couldn’t hold up my clarinet, or even a pen to write with, anymore. I had to leave professional music after my master’s degree.
Today I am finally picking up my clarinet again. I practice in short sessions with splinting and physical therapy. I will join a community group to enjoy concerts again. It’s a struggle, but I love to play.
7. Pain gives me empathy
Ehlers Danlos Syndrome allows me to see the world through the lens of compassion. Even as a child, I had a hard time watching movies in which characters got hurt. When I see someone get hurt I cringe as I feel their pain in my own body. Seeing a broken arm makes my forearms ache. I feel the pain of someone on crutches in my own ankles. I carry all my old fractures and sprains as stories of connection with others. I understand the cry of a baby experiencing acid reflux. I understand the fear of a child who cannot draw a full breath into her asthmatic lungs. EDS makes me a strong empath.
8. Doctors do not always listen to me
EDS is a rare disease, and not all doctors know about it. The zebra is the international symbol for EDS because doctors are taught in medical school that “if you hear hoof beats, think of a horse, not a zebra,” meaning to use the common diagnosis first. EDS symptoms point to an uncommon diagnosis, like a zebra.
Because I am a medical zebra, doctors sometimes don’t believe me. I have had doctors tell me that the pain is all in my head. They have told me that I only need more sleep (although chronic pain does make it hard for me to sleep). They have told me that I am only anxious. They have told me to stop doing activities that I love.
I have had doctors disbelieve me in surgery. I do not respond to local anesthetics. This is a common side effect in people with hypermobility disorders. I have experienced surgeries without any pain control when the doctor disbelieved me about the local not working.
It is disheartening to feel unheard and disbelieved so often. Doctors are supposed to heal, not doubt. I want my story to help raise awareness in the medical community that Ehlers Danlos Syndrome is real. It is very painful. It can be disabling.
9. EDS led me to natural medicine and Reiki
I became my own advocate through my tough experiences with conventional medicine. I read, studied, and learned a vast medical knowledge. I consulted with naturopathic doctors, yoga teachers, physical therapists, and other natural healers. I studied Reiki to the Master level. I have found so much healing in functional medicine. I find healing in blogging about medicine. I find healing in practicing healing with others and sharing my intuitive gifts.
That is a little of my story about Ehlers Danlos Syndrome. Through my experiences, I want to reach out and help others. Chronic pain is tough, but understanding and empathy bring healing.