On a Bad Day With Ehlers-Danlos Syndrome


Today is a bad day — not just with pain but spiritually too. I force myself out of bed against every part of me screaming to stay put. The tears have already fallen multiple times today before the alarm has even gone off. I called out of work today… I work from home. I am a nurse case manager but have nothing I can possibly give to my patients today. Hell, I don’t have anything to give to myself. I drag myself down the hallway, feeling my hips, knees, toes, back, and neck all popping and cracking as they shift back in place. I try to be quiet, hoping my daughter won’t see how disheveled I look and the tears falling once again (not that this is anything new to her). There are days I want no one to see me.

I am 37 years old and have a chronic illness known as Ehlers-Danlos syndrome hypermobility (hEDS), dysautonomia along with many other diagnoses I’ll save for another blog. I have daily chronic, unrelenting pain and chronic fatigue. I still haven’t figured out how to describe just how bad it really is to anyone, let alone myself.

Today I dragged myself in the shower, purposely avoiding the mirror on the way. I sat in the shower and cried and cried. But I knew “not too much crying” as that would trigger a migraine and I had enough hurting already to try and manage. So I dried my eyes,and carefully walked to the mirror to face “it” — my reality.

I look in the mirror, and I see someone so broken and hallow from this illness. I look in the mirror and see fear for my future. I look in the mirror and see longing for the “old” me. I was vibrant, happy, healthy, refreshed, and pain-free (for the most part). I look in the mirror, and the tears begin to roll again. This illness has brought me to depths of sadness, anger, and fear I never knew I was capable of feeling. How did this happen? I have asked myself a thousand times in front of that mirror. How has this illness robbed so much of me so fast, and why now? Sure, I had issues my whole life but nothing that prevented me from being that successful, happy, loving person.

Here lately the mirror is not my friend. I avoid it as much as possible. The mirror reveals the worn look on my face, unless I am lucky enough to apply my makeup strategically that day. The mirror reveals the loss of so much over the past two years of my life.

When I stare in that mirror the questions consume my mind. Some days I don’t entertain them. Other days, like today, I can’t stop them.

Today, when I looked in the mirror, after my shower, a question hangs over me, “Is this really forever?” My answer for today, after I dry my tears and walk away: “Nope, just today!”

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Thinkstock photo by CentralI T Alliance

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