By Victoria Graham
As told to Jennifer Clopton
I have been in pain for as long as I can remember, but the worst of it began when I was 10 years old. I was a competitive gymnast and took a nasty fall off the uneven bars one day – the moment I tried to stand up, my intense back pain started. Fourteen years later, it’s never stopped.
It became clear pretty quickly I was dealing with more than just a gymnastics fall. My pain was so extreme; I was forced to give up the sport and was launched on a new journey to figure out what was happening to my body. From the start, people just didn’t believe me when I described what was I was feeling.
When I would tell doctors my back felt like a 9 out of 10 on a pain scale, they’d look at me dismissively and say, “Sweetie, if it was really that bad you wouldn’t be able to walk.”
If you moved your hands down my spine, you would get to a point in the middle of my back where a vertebrae seemed to disappear. My parents recognized this and became my biggest advocates. They always believed me when I said it hurt and made it their mission to help me figure out what was going on. But for a very long time, nobody in the medical community believed us.
I went to about 35 doctors over the next three years – pediatricians, spinal specialists, pain management doctors, and more. We sought out any help we could think of, but nobody could figure out the source of my pain and why it wasn’t getting better.
I remember one specialist looked at my X-rays and MRI and telling me, “Everything looks fine. I don’t know what’s wrong with you.” They dismissed me from their office – not at all interested in helping me get to the bottom of my life-altering pain.
I was only 12 at the time but I was so frustrated that they weren’t listening to me – it just didn’t seem right. I told my parents that as we made our way out of their office, and they said, if you want them to know that – go back and tell them. So, I spun around on my heels and marched back into their office. “I feel like I’ve been hit by a Mack truck. How can you not care?” I remember asking them. They sat there stunned but didn’t say a word, so I turned around and walked out. We never heard from their office again.
It wasn’t just doctors who didn’t seem to believe there was something wrong with me. In middle school, I literally wouldn’t carry anything between classes – not even a pencil – because my pain was so bad and we didn’t want to put unnecessary pressure on my back until we knew what was going on.
But I’ll never forget the gym teacher who looked at me one day exasperated that I wasn’t able to participate and said, “When is this medical shindig going to be over?”
Or the middle school principal who refused to let me follow through on a doctor’s order to use a rolling backpack between classes saying it wouldn’t be fair to the other kids.
It was a horrible, difficult time. Doctors didn’t believe us. School officials wouldn’t help us make the adaptations I needed. We couldn’t get a break anywhere.
I look back at these difficult moments in my childhood and realize that even though I was in pain and confused and distraught, my beauty was blossoming. My parents taught me to speak up for myself and fight for answers and that built up strength and tenacity. I became empowered, not despite my challenges but because of them.
I switched schools looking for a more supportive environment and once we moved, we sought out a new physical therapist. Steve Freeman was the first medical professional who not only listened to me, but also believed me when I said I hurt. He made it his mission to help me find relief and answers and one day he approached my family and said, “I think you should research something called Ehlers Danlos Syndrome (EDS).”
We had never heard of the genetic connective tissue disorder so we sought out a specialist to learn more. I like to say it took me three years and fifteen minutes to get a diagnosis. Because after a brief clinical examination looking at my medical history, family history and the mobility ranges of my joints, that doctor said there was no question in his mind we were dealing with EDS. Common symptoms include skin hyperextensibility, abnormal wound healing and joint hypermobility – and I had it all.
Looking back, I could have been overwhelmed and distraught at the diagnosis of an incurable, life-long condition. But my mother and I just remember feeling happy, relieved, and validated. There is power and peace in simply being believed.
There wasn’t really a course of treatment. Management of EDS primarily focuses on preventing serious complications and relieving associated symptoms, so I continued on in school and life, because when it comes down to it, you have to live despite the obstacles you face. I went to college, but my health remained a rollercoaster ride to say the least, and I’ve had to take many extended breaks in my education along the way.
I don’t know what the future holds for me in terms of my health. I could end up in a wheelchair or my illness could eventually take my life. But for now I am simply grateful. I am thankful to be alive and for every day and moment that I can take a breath, take a step, and share my story.
Even though I am enduring my own medical battles, I can still fight for and help others. I started a foundation called The Zebra Network to increase awareness, education, advocacy and support for patients with EDS and any other rare, chronic, or invisible illness. The name is a nod to an old medical adage that calls unlikely diagnoses ‘zebras.’ Doctors are taught when they hear hoof beats, to assume it’s a horse, but I’m a reminder that zebras do come along, and we don’t always look the way you expect.
Read more of Victoria’s story here.
24-year-old Victoria Graham lives in Maryland. She works for US Congressman, C. A. Dutch Ruppersberger (MD-02), on Capitol Hill and runs The Zebra Network. She travels just about anywhere to deliver motivational and keynote speeches. She is working to simply, “make the world a better place.” To learn more about Victoria, you can visit her website at VictoriaLGraham.com and follow her on Instagram