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When I Realized That Giving Up Is Part of My hEDS Crisis Plan

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I have had an amazing weekend. I pushed through pain and exhaustion and managed to attend the HMSA and EDS UK Management & Well-being Conference 2017.

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

The conference has to go down as a high of this year, this decade and actually, even my life so far. From the second I walked into the hotel with my daughter, I felt like I had come home. I finally felt like I belonged.

It is inevitable that throughout my life, I have felt like a misfit. Like I was a “second,” or a degenerate. I very much identified with Jerome in the film “Gattaca” – an “in-valid” – genetically flawed. As a teenager, I watched this film multiple times in my bedroom, silently, with tears falling.

I look at my eldest daughter, who already feels different at the age of 9. But this is where the hardest part of realization emerges. We are different. We are constantly in pain. As one of the speakers at the conference said, children, especially with hypermobile Ehlers-Danlos syndrome (or hypermobility spectrum disorder), don’t tend to tell us until their pain has reached an eight or nine out of 10. And I guess us adults are the same. The pain has always been there, and always will be. Our normal sits between four to seven out of 10 most days probably. But that does not mean we are flawed.


I left the conference feeling empowered, strong, happy, confident – with many new friends. New ideas, new knowledge, new hope, new inspiration!

And then it happened… I crashed. Metaphorically speaking of course.

I am unable to sleep in a bed, due to my extremely unstable shoulder and pain in my hips and pelvis. At home, I sleep propped up with a 12-foot U-pillow on our sofa. I didn’t have this option while we were staying in the hotel, and I was utterly exhausted after the conference, so my body dared to sleep longer than it normally would. The result – a severely subluxed shoulder when I woke – it was pretty visible too – sat forwards probably nearing an inch further than my “good” shoulder.

I tried every technique I know to reduce my shoulder (i.e. put it back in place). But it would not budge. I actually coped fairly well for most of the day – I didn’t panic, we visited friends, I managed.

Driving back, we got stuck in traffic – I was so uncomfortable in the passenger seat that I tried to reposition myself, as all the sitting had made my hip yelp and scream. As I pushed on the car door…


Hold breath. Clench face. Close eyes. Internally use lots of sweary words. Breathe. Hold breath again. Externally howl. Finally attempt to move.

Pop again.

Repeat the above with a few external swears under breath.

My shoulder was back in place.

First came relief. Thank the Lord or Universe or whatever I’m not sure I believe in. I could breathe again. I had also discovered a new technique to relocate my shoulder – so next came joy. Mixed in here were some tears. And then, very abruptly, I suddenly noticed the pain. Oh the pain. I was almost sick. I started to panic. By some kind of miracle, we were literally a few minutes from a service station.

I found a comfortable arm chair in a coffee shop, and sat. Once I sat, I cried. I felt angry. There were other emotions, but I think angry outweighed most of them. Angry I cannot do anything without a cost. Without a “crash” at the end. Angry that something so positive and hopeful had been wiped out temporarily by this. And it will only be temporarily, I promise that to myself.

Fast forward to today. It’s one of those days where I have had tears in my eyes all day. They have escaped numerous times. Sometimes consciously, and sometimes not.

I have done everything I know I should be doing – I cancelled phone calls that could wait. I slowed down to a snail’s pace. I (reluctantly) took my painkillers, despite the severe constipation they cause. I did something I enjoy (sat in a coffee shop and listened to music). I managed to get the pen my daughter needs for school – that could not be cancelled – that was my priority for the day. Lastly, I managed to admit to my loved ones that I’m not coping.

I have done everything in a textbook manner – this is my crisis plan, pulled out of the bag. I should feel proud! I should be clicking my heels (not literally, obvs!).

Instead, I feel guilty. I feel like today, I am failing. It has allowed the ruminating thoughts to roam through my brain. Words of people I believed loved me telling me what I am and what I am not. That I am a negative person. That I am a drain on all of those around me. That I am null and void.

Today, today I don’t have the energy to fight the rumination. I have allowed those thoughts and words to take over. I know I’ll be strong enough at some point to fight back again. Months, actual months without these toxic thoughts, a massive period of recovery. I had, or rather have, reached a period of the best mental health I’ve ever seen. But today, today has slapped me round the face. Mental illness has come around to remind me it’s still there, laughing at me.

The anger emerges again now. Angry I still have to fight, fight for people around me to believe I suffer in this way – both physically and mentally. I had yet another assessment last week, so that a stranger could decide if I’m unwell enough not to work.

Angry that over the years, loved ones have walked away from me when I’ve been unwell – that the me who remains underneath, has not been enough for them to stay. Their parting words spinning round like an internal tornado, destroying any positive thoughts that try to break through.

Angry at myself, that today, I have given in. But you see, today I chose to give in. Part of my crisis plan I realize, is to give in. This is my “real” – this is my life; hEDS and mental illness are part of me. By fighting them, I am just setting up another boom and bust cycle.

By giving up fighting, I have the energy and strength to snuggle up with my girls, eating muffins and watching Mrs. Doubtfire.

So today, I give in. Today, I will cry. I will mull over the thoughts I can’t get rid of. Today, I will hang on to those precious memories of the weekend – of the people I met, who were so friendly and kind. Today, I will focus on all of those people who do love the real me, who choose to stay, despite my bad days. Today, I will remember how strong I am, of the many days like this I have endured. Today, I will also feel proud. Proud I am making a difference, that my articles are raising awareness. But most of all, that today, I have chosen to give in.

Thinkstock photo via corbac40.

Originally published: October 3, 2017
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