So excited for our first guest post from Nessy, thank you so much for sharing your journey!
My name is Vanessa (Nessy), I’m in my late teens, and I have Ehlers Danlos Syndrome Type 3. To some extent, I have always known that something’s wrong with my body. When I was in preschool, I was constantly tripping and falling. I never could ride a bike. I struggled in kindergarten because I was unable to hold a pencil properly. I wasalways in pain. I twisted my ankles on a regular basis. When I was eleven years old I startedhaving severe tachycardia. At age fourteen I started collapsing and having blackouts invision. I was always injured; I often had no idea how my injuries had occurred. All of mydoctors dismissed my complaints, so my mother and I eventually quit searching for adiagnosis. I was actually starting to convince myself that nothing was wrong. My diagnosis came unexpectedly, considering we were no longer searching for one. The summer before my sophomore year of high school, I had a buckle fracture by the jointthe connects the foot and the big toe. The orthopaedist told me to wear a postop shoe fora few weeks and said I would be fine. I wasn’t fine. Four months later my foot still hadn’thealed. After two more xrays and several followup appointments, the orthopaedist stillcould not figure out why I wasn’t healing properly. Thinking that arthritis was a possibility, hereferred me to a rheumatologist. The rheumatologist examined my foot and determinedthat arthritis was not the issue. He said that it was possibly a type of complex regional painsyndrome and suggested that I should see a physical therapist. He started to leave theoffice, but hesitated. He asked if we had time to stay for a complete examination. He thenproceeded to poke me with objects of different textures, pinch my skin, and move all of myjoints in all different directions. I was beyond confused. He handed me and my mother apacket of information about EhlersDanlos Syndrome. The rest of that day was a blur. I leftthe office diagnosed with EDS III and Dysautonomia.
I didn’t fully process what my diagnoses meant right then. I don’t actually recallhaving any clear thoughts or feelings about the diagnoses. In all honesty, I still haven’tprocessed it all. It feels strange to think that I have these conditions that will affect me for myentire life. Since being diagnosed, my life has been filled with a whirlwind of appointmentsand hospitalizations. My feelings about my health conditions vary and come in waves: relief, anger, sadness, depression, fear, anxiety, disappointment, confusion. I’m glad tohave diagnoses, however, I often find myself frustrated by the fact that I can’t be cured. Thehardest thing for me has been accepting my limitations. I remember crying in my physicaltherapist’s office because I was afraid of having to give up my goal of having a career intheatre. I will not explain everything that has gone through my head, for I would have to writea series of novels to do so. I wish that I would have known not to have any set expectations for my treatment. Thetruth of the matter is that doctors can only take their best guesses as to what treatments willbe helpful in managing my condition. I wish someone would have told me that doctorswould look at me and say “I don’t know what to do”, “I’m not familiar with your condition”,
etc.. I guess, I’m starting to get used to hearing things like that. I would love to see the day
when doctors do know how to help patients with EhlersDanlos Syndrome. Since being diagnosed, I have found a couple things to be quite helpful. The first thing that has helped me has been the support from a few amazing friends. I love being able to text them and have them keep me calm during hospital visits. I’m so grateful to have friends that listen when I vent about my pain (both physical and emotional) and my fear. The second thing that has been tremendously helpful is being active in the disability andchronic illness awareness/advocacy community. My activity is mainly through social media; my Instagram page, @zebrasurvivors, and my blog, thecreativezebra.wordpress.com, havehelped me to find my voice and connect with amazing people all over the world. I have alsostarted making zebra bracelets that I sell to friends and family in order to raise money forcharities that help people with EDS. My biggest piece of advice for those living with EDS and/or other chronic conditions is to be your own best advocate. I know that self advocating can be scary. It’s something with which I constantly struggle. However it is so important. No one knows your body and your needs as well as you do. Never lose hope. Always remember that you are beautiful and strong.