What You Don't See About My Life with a Disability
I’ve had three orthopedic surgeries, numerous dislocations, multiple boots and casts, over 10 rounds (and counting) of physical therapy, and I’m only 19 years old.
My family and I thought the world hated me, but then we discovered Ehlers Danlos Syndrome.
I am the lucky one in 5,000 who won the stretchy disability known as EDS. Now surgeries, appointments and physical therapy are just a part of my everyday life.
Ehlers Danlos Syndrome, or EDS, is a genetic disability that affects all of your connective tissue (ligaments, tendons, tissue, and skin) and the nervous system. It’s a recent discovery, so doctors are still working to uncover the genes responsible and a long-lasting way to ease the symptoms.
Connective tissue is found in every inch of the body. Because there are so many kinds of connective tissues, experts have broken down EDS into 13 types. The types range from stretchy skin to a fatal heart condition. I’ve been diagnosed with type three, hyper-mobility of joints and sensitive skin, which can range from easy and long-lasting bruising to a complete dislocation of a joint.
Joint pain and dislocations are an insufferable experience. Doctors and physical therapists have told me to focus on maintaining a diabetic diet and not overdoing or under-doing everyday activities. All of my walking, lifting, and stretching is limited.
If I walk too much or do an excessive amount of activity in a day, muscle spasms and joint pain can keep me from walking for the next few days. The twitching in my thighs is usually triggered by too much activity or sometimes it can just be completely random (which is ALWAYS a pleasant surprise). If I walk while having a severe muscle spasm, I put myself as risk for a possible dislocation of my knees, falling, or if I’m really lucky, both at the same time.
EDS is known as an “invisible disability” because if you look at me, I look completely normal, which can be nerve-wracking. When I need to use a handicap parking space, I will get uneasy glances (sometimes glares) from strangers because some people assume that if they can’t see your problem, it’s not there.
There are no long-term treatments to help ease my symptoms of EDS, only short-term ones like surgery, pain medication and physical therapy. The only way to combat the symptoms are by working hard to maintain a healthy lifestyle.
In an everyday battle with EDS, a positive outlook towards life is a must. Positivity is the key to living a happy life whether you have a disability or not. Through my unordinary life, I’ve learned valuable lessons that can be applied to any situation.
When life doesn’t go as expected, don’t get discouraged.
My entire life has been anything but planned; one dislocation for me could lead to months filled with surgeries, doctor visits, and possibly other orthopedic problems. Sometimes you have to let go and trust the process. For example, in my senior year of high school, I was going to be the captain of my school’s varsity volleyball team. My knee randomly dislocated during a summer practice, and I had to undergo a total reconstruction surgery. Instead of giving up, I maintained a positive attitude through the indescribable amount of pain and finished with a full recovery.
Make sure to surround yourself with a supportive group of family and friends.
With or without a disability, college and everyday life can be a struggle. If you don’t surround yourself with a group that has your best interests at heart, you could crack under the pressure. If I ever get frustrated with my joint pain, I know my friends and family are there for me. Between my friends sending me funny memes trying to distract me from the pain and my mom making the endless amounts of doctors’ appointments, I know I’m never alone.
Strive to find the positives in every situation.
Personally, this is the hardest thing for me to do. It’s easier to look at everything wrong and mope than to look for the growth and lessons you learn going through hardships. When I found out I had Ehlers Danlos Syndrome, I couldn’t get over the fact that I could never participate in a sport I played my entire life. I knew I had to change my mindset. Although I can’t focus on playing a sport anymore, I found I can focus all of my energy on what I love doing most, photography and writing.
Love yourself and put your needs first sometimes.
Instead of focusing on what you don’t love about yourself, learn to see the beauty in imperfections and love yourself for who you are. Instead of thinking about what was wrong with me, I had to learn how to accept myself for who I am. My disability isn’t a stumbling block, it makes me stronger. Without my imperfections, I wouldn’t be who I am today.
Ehlers Danlos Syndrome is a condition that I’ll have for my entire life. It’s been a struggle to grasp the concept of EDS, and I’m still learning more about myself and condition every day. There are some really bad days, but I wouldn’t change my life to be any other way.
Without Ehlers Danlos, I wouldn’t be the person I am today. EDS has shown me the strength and willpower I have to overcome my difficulties and I will keep fighting for a healthy lifestyle.
Be well, Auburn.
Photography by Hannah C.