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What I Really Mean When I Say I'm 'Hanging in There' With Ehlers-Danlos Syndrome

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Every Sunday morning, I hear the same question from a few caring people. It’s the same people every week who take the time to ask. I prefer not to lie, so, I usually answer “hanging in there.”

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

Sometimes “hanging in there” is all I can manage to do. I have classical Ehlers-Danlos syndrome and several of the sister diseases that go hand-in-hand with it. A few of my daily realities are chronic bone pain, tachycardia, low blood pressure, digestive problems, and fatigue.

Those who know me know I keep busy. I teach Sunday school, direct the choir, write books, blog, run Facebook groups, and take care of my home. I overdo it. And if I spend one day overdoing it, chances are I can’t do much of anything the following day. Sometimes it takes several days to recover enough to be back to my “usual” self.

Although, there is no true “normal” or “usual” for me. I may be able to take a walk one day and the next day have to use a cane or wheelchair. My joints seem to have a mind of their own. They pop out at will. Or we may be having a pleasant discussion when I suddenly stop chatting and have a look of agony on my face. A rib likely dislocated. The pain is excruciating. I can’t speak. Most of the time, I can’t even scream. Often, I will seem to fade out, possibly go white, and, if possible, sit down. That usually means my blood pressure is dropping and my heart rate is increasing. I can’t function when this happens. I have to wait for it to pass. Medications help, but they don’t prevent every episode.

One day, I might eat a steak dinner with a baked potato. A few days later, I might not even be able to eat a cracker without getting sick. My digestive system is unpredictable. I have occasional good days, but most days are difficult. I’m not on a diet. I lose weight because I can’t manage to ingest enough calories to maintain my weight without feeling ill. I try to make up for it on the good days, but they aren’t consistent enough for me to maintain a healthy weight.

I went out on disability because I couldn’t handle the physical pain and exhaustion that came with working a 40-hour work week. Yet, too often, guilt at not getting enough done throws me right back into that cycle of pain and exhaustion, followed by a recovery period.

So, when I tell you I’m “hanging in there,” this is what it really means. It means that I’m doing the best I can to live my life to the fullest despite:

  • Being in severe pain
  • Slowly starving
  • Being light-headed
  • Having a migraine
  • Having a racing heart
  • Fighting a mast cell reaction
  • Being physically exhausted
  • Being emotionally exhausted

When I tell you, “I’m hanging in there,” I’m trying to be honest without having to divulge all my personal health information. I’d much rather talk about something other than my disability most of the time, so it’s my way of answering you honestly, without getting into too much detail.

Originally published: April 10, 2017
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