Disjointed With Ehlers-Danlos Syndrome

Another day another dislocated knee. I sat on the floor looking upwards into the hole where the needle needed to be placed in the machine. The sewing machine needles keep breaking not sure if this is because of a tension issue or something else. Needless to say it needed to be replaced. I got down on the floor look at the broken needles and remove them to insert the new ones. Once the new needles were secure I stood up from the floor to go make myself another coffee, as I did so I barreled into the chair and ripped my knee cap off from where it once sat. “Oh, fuck, fucking shit!” I screamed in agony. The knee cap on the side of my leg needed to be reset. It looked to me like an egg sliding off of a plate for the juxtaposition it had become. “This is going to suck!” I gently push my eggy knee back to the place it should sit and bend my like with veracity. The knee clicks and with that the sharp pain of relocation has taken place.

Ehlers-Danlos Syndrome (EDS) is a bitch. I honestly hate this genetic illness. If there was cure I am sure all of us would slather it onto our bodies or ingest it. Reality is the hard pill to swallow causing the pain in the joints and random body pains that burn and tare us from within. Dislocations are something I experience regularly. When they first began to happen I was confused why it felt like I was breaking bones, or why my insides were ripping from doing nothing. I am grateful being able to name the villain within my body, however, it does at times remind me how fragile my mortal shell is. The insides do not match the outside, this is a curse of EDS.

EDS makes me look healthy, young, vibrant, all the while feeling like a decrepit elderly person inside. EDS is pain, pain in which others may not understand. Subluxations are a daily part of my life I rarely talk about. A subluxation is a partial joint dislocation, this is where the joint (in those who have EDS) forces itself out half way, this happens to my Fibula, it will sit half in and half out and you can see the head of the bone protruding through the skin. It hurts to walk, and due to a physical therapist who wiggled this joint out of place fully, I know have pain and subluxation of this join everyday.

Something I have seen within EDS community is the amount of brace use that is a normative in daily life. As someone who did brace daily for a year, I can tell you this caused the frequency of the dislocations to increase substantially. Why is this? When we put a plastic or metal brace on our joints regularly we become reliant on the brace, thus our muscles begin to atrophy. Atrophy means our muscles deteriorate and become weak. Bracing short term is ok, but long term causes issues, this is something a doctor told me long ago and since then I have tried to brace less. I know it can feel safe in the braced space, but as someone who had my femur, and parts of my pelvis dislocate I want to improve my inner bracing within my musculature.

Doctors encouraged me to walk, not sit all the time, to do things around my place and ride my exercise bike a little bit each day. While exercise may sound boring, the benefits are strengthening the muscles around our joints to intern try to make them our internal bracing and ideally dislocate less. While this isn’t a cure-all or a guarantee, as someone who has much hope for improvement I will never quit on trying to do what I can to increase my bodies abilities.

With a fresh knee dislocation I can not do my biking and must rest my knee. As someone who has seen countless specialists this is where my information comes from, it comes from the doctors I have seen, and the research I have done on my own. Please note, I am not a doctor, but I am a patient living with this painful illness, and I want to share what has worked for me.

Thank you for taking the time to read my blog, I appreciate you and your time. Remember to try to do one thing you love everyday, because self-love will help you in many ways.

If you haven’t done so, please check out my YouTube channel where I talk about various health issues and post update about my documentary which will be out in 2024. I hope to bring hope to others and to encourage them to live life which being sick.


Published by aricubangbang

Artist and writer. Living with chronic illness and writing about it. I have survived two cancers, I live with hyperadrenergic postural orthostatic tachycardia syndrome, ehlers-danlos syndrome, mast cell activation syndrome, jaundice, esophagus dysmotility, Chilblains, Raynaud's, migraines, asthma, and more. I have mental health problems which I am not ashamed of, I have CPTSD, anxiety, and depression. My medical history is extensive, but I will continue moving forward. I have hope to help others not feel isolated alone, and forgotten by an ableist society.

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