Growing up I often hot hurt bruises stitches and even a dislocated elbow at two as i got older playing with friend just added more bumps but i kept going
I always had to stop playing because my ankles, knees, and hips would be aching. I thought everyone else felt like this, so I didn’t think anything was wrong. My parents thought I just played harder than the other kids or I was having growing pains.
As I moved through elementary school, my pain continued to get worse. My pain got to the point where my dad would have to carry me upstairs to my room because my joints felt as if they were being ripped apart. My parents started to worry something more was going on, so my mom took me to the doctor. My doctor said, ‘You’re just having growing pains. Girls are usually more dramatic about these things,’ and sent us on our way. When I was around 9 years old, I got to the point where I could not walk without excruciating pain, and my knees would dislocate at least twice a week.
at 9 dislocated my knee while petting our dog and after tests doctors diagnosed me with my hypermobility syndrome my parents and i accepted it thinking id outgrow the pain eventually, but it still felt uncertain.
When I hit high school, my joints continued to ache, dislocate, and swell. My parents and I figured it was just Hypermobility Syndrome, and I was going to have to wait it out. In 2016 and 2017, my senior year of high school, my health rapidly declined. I was having intense migraines, phases where I would lose consciousness, and debilitating joint pain and dislocations. After going from doctor to doctor, they would say my symptoms were all in my head, and there was nothing wrong with me. A doctor literally told me to ‘stand up slower’ so I would stop losing consciousness. I continued to become incredibly ill, which caused my mom and me to start researching again.
I then began college in the fall of 2017, 9 hours away from home, in North Georgia. My health continued to decline throughout my freshman year of college. I was desperate for answers, so I continued to search. Whenever I was not in class or doing homework, I was searching for what could possibly be wrong with me. Every break I had from school was spent in doctors’ offices.
for the first time doctor truly listened to me and confirmed my pain was real. in 2019 i was i diagnosed with Ehlers Danlos syndrome and pots finally understanding what was wrong with my body
at 21 I face constant doctor visits surgeries and loneliness wishing for break from illness
I hide most of my chronic illness struggles letting only a few people see how much the pian really affects me. in 2019 I hit a dark place and felt like burden until my mom reminded me with tears that I was her child not a weight
You are not a burden that I’m carrying, you’re my baby and I will do anything, anything to take care of you. I love you.’
There are so many mornings where I slip joints back into place before crawling out of bed. There are days where I just want to quit to escape pain. There are times where I wish I could be with my friends but can’t because my body is screaming no. Battling the crippling depression and anxiety that comes with constant physical pain is taxing. There are days where I question the purpose of my life. I question why God saw it fit to make my body this way. I ask, ‘Why should I stay? What is the purpose behind all of this?’ But then I remember: I may not see God’s ultimate purpose for my life on this side of Heaven. That is something I continue to struggle with.
During times of struggle, God reminds me of Romans 8:28 and 2 Corinthians 12 where God is working everything together for my good, and my weakness is made to strength in Him. This gives me the freedom to be weak because I can fully depend on the Lord. One time, my mom told me she and my dad were talking to one of our family friends about my health and my dad said, ‘My daughter is a bad a*s who can face anything.’
The 17 years it took me to receive a proper diagnosis motivates me to advocate for those of us in the chronic illness and disability community. Many of us suffer from invisible illnesses that are not blatantly obvious to those around us. As a result, people in public often make rude comments or throw harsh glares at us when we don’t offer up our seat to an older person or we use handicapped spaces in parking lots. Sometimes, I wear knee braces to keep my knees in place. Wearing braces does not make my illnesses more valid, but more visible to those around me. I think it is incredibly important to educate people on invisible/chronic illnesses because they affect a wide variety of people.
It is also important to raise awareness so no one else has to go through a story like mine. So, no one else must struggle with validating their pain, explaining their experiences repeatedly to doctors, or receiving multiple misdiagnoses before finally finding out what is going on. Even after receiving a diagnosis, I am having to explain what EDS is to medical professionals. I often find myself to be more knowledgeable about EDS than some doctors. Advocating for chronic illnesses is something I feel like I need to do so no one else must go throughout their life struggling to find answers like I did.
