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When I Mourn Who I Wanted to Be Before Chronic Illness

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After years of suffering in silence, I finally fought my way to a diagnosis (Ehlers-Danlos syndrome). At first I was elated. Finally, I could tell people I was sick and give them a name of an illness that described my symptoms. I thought that having a tangible diagnosis would allow me to be who I truly am in public. No more pretending to be home doing homework. No more ducking phone calls and avoiding social invitations. No more fighting accusations or implications that I am lazy. No more questioning of my intentions. No more lying to myself. 

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Part of my diagnosis includes the prognosis that I will not get better. I will never wake up feeling rested. I will never run a 5k (I don’t know why I want to do this, anyway). I was told I can never do any high-impact activities because the risk for fractures and the inability to heal is so great. At first I didn’t really think these things mattered. After all, I no longer had to pretend to join a gym or exercise. But I also can’t actually do these things. I can’t be who I pictured I would be. My world suddenly feels so small. I never got to do an adult hip-hop class! I can never do boxing again.

I never thought there was going to be a magic pill that made me feel better. But hearing that I would never get better or, as my doctor put it (and I quote), “You will probably never be who you wanted to be” was beyond devastating. Like, someone needs to invent a new word to describe how I feel. I always thought if I could just find the right diagnosis, the right doctor, the right treatment, etc., I could work really hard and feel better and live a “normal” life for the first time. Nope. Not happening. And I do not want to hear about “what I can do” or my “new normal.” I’m still stuck on what I wanted. I wanted to work long, rewarding hours. I wanted to bounce from work to happy hour. I wanted to stay up past 8:30 p.m. and still be able to function the next day. I wanted to join a 7 a.m. spin class and only make it there once a month. I wanted to work two jobs and come home and do the laundry. My expectations were not too high.

What I want you to know is that I am mourning who I wanted to be and I’m not done yet. I wanted to be “normal.” It wasn’t too much to ask. I know people have it worse than me. When I break down and cry because I am so sad, please don’t tell me it will be OK. Tell me I deserved what I wanted to be. Tell me I did nothing wrong. Tell me it’s not my fault. Tell me how hard I tried. Tell me I’m good enough.

I always wanted to do something great, something extraordinary. Maybe the challenge is finding out what that thing is within the confines of my limitations. Give me time to mourn who I wanted to be, and I will get back up.

Originally published: April 7, 2016
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