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The Photos of My Diseases I Never Wanted the World to See

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Take a look at the pictures…

woman sitting on floor breathing through a tube device

…it’s kind of hard to look at right? Makes you feel a little uncomfortable?

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

That is a picture of me, in the middle of dealing with yet another hip dislocation after yet another faint and yet another fall. I wanted this picture to be taken — not because I wanted to see how I look when I’m experiencing the worst pain imaginable, but so I could share just what happens when I fall and hurt myself.

I have Ehlers-Danlos syndrome (hypermobile type with classical crossovers), postural orthostatic tachycardia syndrome (POTS) alongside multiple other co-morbidities (Crohn’s, disease, endometriosis, hypertrophic cardiomyopathy and asthma for those who are interested).

I suffer loss of consciousness several times a day with absolutely no warning and sometimes the result of one of these fainting episodes is that picture. I faint, fall and if I land in certain ways I end up dislocating or subluxating one or more joints.

Heat, pain, stress all exacerbate POTS… which means in the summer months my life turns into a living hell merry-go-round – increased faints, increased dislocations which in turn leads to increased stress, anxiety, depression, anger a long side multiple trips to A&E, multiple ambulance rides, multiple paramedics and EMTS, multiple doctors which in turn means me having to explain my long and complex medical history repeatedly, means having to prepare myself for disbelief, mistreatment, ignorance and being treated like a second class citizen.

It gets so tiring – for half of the year my life effectively stops I can’t be left alone I can’t shower alone, I can’t prepare food, certainly can’t leave the house alone. Yet no one ever really gets to see why I can’t do all of these things.

People around me – friends, family, medical practitioners – they never see what these diseases do to me as a person. That is why I wanted that picture to be taken.

It was taken before I’d been given morphine – I always try and put my joints back in using gas and air, and willpower and self-meditation before I turn to stronger meds. But there are times, like yesterday when I had exhausted all options and gladly accepted help from a paramedic. You have no idea how much it costs me mentally, physically and emotionally to admit “defeat” and allow the medics to intervene. It’s bad enough that these diseases rob me of my freedom and independence but then they go further than that – they take away my ability to help myself.

I’ve spent years hiding my pain from nearly everyone around me – I know how bad it is, why shouldn’t I try and protect those I love from the unendurable pain and suffering I go through each time I dislocate a hip? But quite frankly this disease has taken so much from me and changed me so much that I’m sick of living in the shadows.

So this is me – I’m 34, I have multiple chronic genetic incurable diseases and this is what they do to me. Now you know… it won’t go away it won’t get easier to deal with, but I’m fighting back now and not hiding the reality of my everyday life. It feels good to share it finally.

Originally published: August 4, 2017
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