As a child, I was never the sick one. I was the one who exaggerated any and all injuries to my parents. A sprained ankle or wrist was never cause for concern. I would get hurt easily. I couldn’t see well but not even doctors believed me.
My joints have been hypermobile all my life and I thought it was so cool. I used to show off my “double jointed” elbows and twist my arms 360 degrees as a child to show off how well my joints moved. People either thought it was cool or were grossed out. The reactions were fun nonetheless.
As I got older, injuries happened more frequently. My knees got bad, my wrists got worse, and my ankles caused constant problems. Dislocations, subluxations, sprains, but almost never breaks. If it wasn’t broken, I didn’t need a hospital. My joints always popped back into place.
As a junior in high school, my best friend had PCOS and a cyst ruptured her ovary. She went into emergency surgery for it. A few weeks later, pelvic pain started that just kept getting worse. After telling her about the pain, she told me it was the same as what she felt each month and to go to my mother. The first hospital trip, they overlooked ovarian cysts. When the pain didn’t get better, we went back. They had found a benign cyst on my uterus the first time, but a new test had confirmed I had ovarian cysts. The first scan had seen them but they were overlooked. I started birth control to stop cysts from forming.
When I was a senior in high school, I took a sports medicine class for my physical education credit because the doctor decided I physically could not handle gym class. In this class, I discovered #EhlersDanlosSyndrome during a musculoskeletal disease project. I covered hypermobility type, type 3, for my presentation. I demonstrated every diagnosing criteria on the test. I was asked if I had it and I said I didn’t know. It turned out, my father has it, and I do too. I missed school because of doctors, but, because my teacher was the reason I found out, all of my teachers understood.
Ehlers-Danlos Syndrome is a connective tissue disease. Each type has its own properties. Hypermobility type, the one I was diagnosed with, presents with hypermobile and lax joints, elastic skin that feels velvety, and some vascular problems. No one realizes how horrible it is to live with this condition. Vascular type, the type the doctors think I may have, causes a lot of vascular problems amongst all organs in the body. Many die by the age of 27 from aortic dissection. A geneticist refused to test me because I had not gone through an aortic dissection yet, even though all of my heart problems point to it.
I was diagnosed with premature ventricular contractions, low blood pressure, #SinusTachycardia that happens everyday, and one leaking valve. One valve later became three. I was told I may never be able to have kids because my uterus could rupture. My doctor has been fighting for years for me to be tested for vascular type, type 4.
The day before my senior prom, I was diagnosed as legally blind. At 14 I discovered I needed bifocals. Senior year of marching band, I realized I couldn’t see on the sides of my vision. Diagnosis didn’t come for years after, and I was diagnosed with #RetinitisPigmentosa. RP is a rod cone dystrophy that starts with the peripheral vision deteriorating. Some just get to that point. The second step is #ColorBlindness. The last step is being completely blind. I am currently going colorblind.
At 21, I went through a #Miscarriage. Three days later, I stopped walking. I could feel below my waist, but could move nothing. It started as one leg being hard to move. After a half an hour, I couldn’t move my lower body at all. I was rushed into the hospital for testing. While I discovered I have #Scoliosis, spondylosis, and four bad disks, nothing else came back. I was diagnosed with conversion disorder.
Conversion disorder is common in people who have been abused. After or during a stressful time or event, the mind shuts down part of the body to cause it to slow down and relax. Some go temporarily blind. Some become mute. Some become deaf. I become paralyzed.
While pregnant with my miracle son, I discovered that I had gone #Undiagnosed with acid reflux all of my life. Water had always caused heartburn. When told to drink more water at a prenatal care appointment, I explained that water caused heartburn. When they found out it wasn’t the pregnancy, I was put on two acid reflux medications. Nexium is my next option, but I cannot afford it and we are fighting with my insurance for them to cover it to this day.
I was diagnosed with Grave’s disease almost a year after discovering that my thyroid is hyperactive. I weigh too little for someone who is 5’7”, and have been accused of being anorexic due to my size. I’ve been told to eat a sandwich on many occasions. Someone even told me that I just need to see a dietician, after I was told my enlarged thyroid could be cancerous. I found out it wasn’t #Cancer, but I was still treated horribly.
On top of those, I have #Depression, #Anxiety, PTSD, #Asthma, a polyp in my gall bladder, chronic myoclonic #Epilepsy, #Arthritis, carpal tunnel, TMJ, an astigmatism, a tilted uterus, tendinitis, high functioning autism, chronic migraines, and many #FoodAllergies, one of which is deadly.
I have been called a hypochondriac. I have been told I have Münchausen syndrome. I’ve been told I’m faking everything for attention. I’ve had doctors look at me and tell me they won’t do tests because I have not had rare complications associated with certain conditions. When I can barely move, I am treated like I’m faking. If I used a handicapped device such as an electric cart, I get dirty looks.
I want people to realize that just because I look healthy, that doesn’t mean I am. My son is 17 months old and doesn’t yet understand that his mommy won’t be able to do things like play soccer and chase him around the yard. I dread the day when my son realizes how sick I am, even if I don’t look it.
Please be mindful of that seemingly healthy person with a handicap placard, or that young person in the motorized shopping cart. They may be sicker than you know.