‘I collapsed in debilitating pain. My sister found me. The doctor said, ‘You’re fine!’ I cried in my mother’s arms.’: Woman battles Ehlers-Danlos Syndrome, ‘I found the courage to ask for help’

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“I had everything I could have ever wanted or needed growing up. I had loving parents, two witty and caring older siblings, a dog that kept me on my toes, opportunities in education, a roof over my head, and outstanding friends.

Yet I still found myself in front of my mirror at age thirteen rehearsing the speech I planned on giving to my parents. ‘Hi, I’m Taran. Of course, you already know that. I have an eating disorder and I struggle with self-harm. I am in so much physical pain every day. My body hates me, so I hate it too. This is not your fault. I love you so much and I am still your daughter. I am sorry.’ I rehearsed that exact speech dozens of times, but I never delivered it.  I didn’t want my parents to blame themselves for how messed up I was inside.

So I filled the void with romantic relationships. That masked the pain momentarily but I relapsed into self-harm when I was sixteen. My physical pain grew intolerable. I was facing horrendous pain in my legs, stomach, back, and neck. I was bruising easily, seeing black spots (I once thought I was the kid from The Sixth Sense), and was barely sleeping. I strongly resented myself and questioned my life.

As my physical and emotional turmoil worsened, I found myself in and out of doctor’s offices. Whenever I was given an intake form I always checked the box that said depression. It was never once questioned. How many times had I spent time filling out those forms just to have them disregarded? How many times did it take before I stopped taking them seriously altogether? Too many. As a child I was too terrified to use my voice to speak about my depression but I mustered up the courage to check that box again and again. It was dismissed every time.

When I was 20 years old my physical pain was excruciating. I had two root canals in less than a year. I could no longer wear contacts due to a daily stabbing pain in my right eye. I was bleeding out when I went to the bathroom. My knees could barely hold me. But my mental health was improving. I made the decision to begin jogging with my dog to improve both of our lifestyles. After one day of exercise I walked into my bathroom and began removing my sports bra. I collapsed to the ground with debilitating chest pains. I couldn’t breathe. I couldn’t yell for help. I thought I was dying when I had finally found reason to live. I managed to moan and kick a drawer. My sister found me first, and then my mother. I was rushed to our clinic where I was stripped of my clothing and began an EKG. After one test a doctor told me, ‘Everything looks good. It’s probably a pulled muscle.’ I was so ashamed. I stopped exercising and resumed hating my body for its shortcomings.

Fast forward to the first week of October in 2018, a recent college graduate at the age of 22. At the beginning of the week I underwent an urgent procedure due to how much I was bleeding out. Two days later I had to make the difficult decision to put my 12.5 year old dog down at 3:00 a.m. after her long bout with stomach cancer. On the same morning I said goodbye to my princess, my family and I traveled to a pain clinic across the state. I spent three hours being observed, tested, and most importantly, listened to. Tears fell from my eyes as the specialist told me, ‘Taran, I know in my gut you have hypermobile Ehlers-Danlos Syndrome.’ She educated me on the relationship between mental health and chronic illness and how they are connected! I finally had answers. I finally had hope. I finally understood none of this was ever my fault. I wasn’t crazy!

In recent months I have also been diagnosed with Postural Orthostatic Tachycardia Syndrome, Pectus Excavatum, and Slipping Rib Syndrome. My time has been filled with medical tests and appointments. I have learned that prior test results were misread and the collapse that occurred was indeed a big deal. My thoracic surgeon informed me I am ‘an excellent candidate for chest surgery.’ My heart and lungs are not functioning as well as they should at my young age. I will be traveling to another state to begin prolotherapy for my ribs and am now taking oral ketamine due to intense pain. This journey is far from over.

Although I am beyond grateful to finally have answers, this process has been emotionally taxing. I have tried to see six different therapists but have been denied each time due to insurance battles or wait lists. I have had nightmares every night about a best friend I have lost. While some of my peers have been starting their own families I have never cried in my mother’s arms more than I have this year. I have worried myself sick not knowing if I will ever be able to fulfill my dream of working as a child life specialist due to my health. I have struggled immensely with taking over fifteen pills a day. I’m not even sure if I have fully processed the grief of losing my dog. I have never felt more broken than I have at 22.  It has been the year the iceberg finally tipped.

Recovery is not linear. But with the right perspective, there is beauty in the breaking. I have had the courage to ask for help. I have had the bravery to share my story online and advocate for the recognition of chronic illnesses. I have met so many beautiful souls in the chronic community. I have not self-harmed. I have experienced true friendship. I have found an exercise program that works for me and now coach others in their health journey. After 4.5 years of schooling I am a certified child life specialist and will be earning a Master’s degree in Thanatology in the coming years. I have published my first work, The Fragments of a Child Life Intern, on Amazon. After attending an extensive training out east I am a certified Children’s Disaster Services volunteer ready for deployment. I have also begun a new job working at an emergency shelter for victims of domestic violence and their children.  With the right mindset, anything is possible.

This is my first time sharing my story in its entirety.  As terrifying as that is, it is a relief to finally introduce you to the real me. It should not have taken 22 years for one diagnosis, let alone four. But it did. And it continues to happen time and time again to individuals in the chronic community. The risk of suicide only increases for those of us with chronic illness. I want you to know you are not alone.”

This story was submitted to Love What Matters by Taran Lancaster of Wisconsin. You can follow her journey on InstagramSubmit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more inspiring stories about battling chronic illness here:

‘I love when you are healthy, and can play with me,’ my son said. That CRUSHED me. I was forced to observe my son from a distance, watching his life from afar. I couldn’t join in.’

‘I was out at a restaurant. ‘I’m not feeling well,’ I said. I knew something was wrong. Shaking, I excused myself and drove straight home. When I got back, my world crumbled around me.’

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