Published: 14/04/2023 Tags: Stories

I couldn’t be more thankful for the support I’ve had

Hi, this is Ava, and I am 19 years old.

I was diagnosed a few years ago after an ongoing search for answers. I became symptomatic when I was around 8, when doctors brushed my symptoms off as growing pains. As I grew older, the pain got worse. Physical activities and sports such as volleyball and cheer I participated in grew harder and harder until I was forced to quit. Nobody could understand the daily struggles I was facing with this invisible illness. I knew something was wrong.

After years of complaining, my mom finally took me to a doctor to get checked out. I was dismissed by multiple doctors because they couldn’t find anything wrong. This went on for numerous years. Then, I finally found a doctor that started testing me for many conditions. The negative results of countless tests left the doctors stumped. That’s when they performed the physical test for EDS, and I was diagnosed with EDS types 1 & 3 (now known as classical and hypermobile types of EDS).

Following this, I was sent to many other well-known hospitals. These places, which are known to be extremely good, were appalling. Doctor after doctor dismissed and gaslighted me. Many tears were shed, and I began to question everything. Was there really nothing wrong with me? There’s no way this pain could be coming out of nowhere. After being let down by so many of these “excellent” doctors, it was time to find my voice.

I knew my body best, and I was going to keep seeking an answer. As my symptoms progressed, I longed for answers. Being constantly in pain; not being able to open my mouth due to a locked jaw, inability to jump/run, having many painful dislocations, horrible fatigue, severe lower back pain, chest pain, random sleep spells, and falling downstairs were just a handful of my symptoms. There were days when I could barely get out of bed let alone complete school, work, chores, and daily aspects of living.

After a move across the country, I found the best doctors yet, who confirmed my diagnosis and acknowledged my pain. Not only are they educated on this rare disease but are vigorously working to help me cope with symptoms and increase the quality of my life. Every day is a struggle, and doing even the littlest things like getting up and showering is a challenge, but I push through it and I am beyond appreciative of the doctor I now have beside me.

It has been very tough to accept, and I still believe I am partially in denial, but this is my life. Every day I carry the stress of the future, getting through college, and choosing a career that will suit the needs of my body. For many, it is difficult to recognize this disease, and some don’t even believe me. Some comments people make are “But you look healthy”, and “You’re too young to have these problems,” but what little do they know?

This experience has not only opened my eyes to how uneducated doctors are but also how incorrectly they diagnose. I couldn’t be more thankful to my doctors, parents, friends, and family for all their support through these difficult times. “You are going to carry this illness with you for the rest of your life. So you can either wallow in the weight of that, or you can fight for your only life and make it a good story.”

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