Please note, this is my personal experience of living with Ehlers Danlos Syndrome, the treatments and path to diagnosis and should therefore not be taken as medical advice.I am aware that some complaints are only indirect EDS symptoms but these also contribute to the overall picture and my experience with the condition, EDS.
Depression comes in different degrees. Self-reflection is difficult in situations where one is struggling with different problems.
Humans are strong and resilient. The body can take a lot and we don’t have to think about various tasks. Many processes happen automatically without us having to think about them. This works slightly differently for someone with EDS. With every step we have to be careful so that we place our unstable ankles correctly and don’t let the knees buckle backwards. The back has to be tense to have a somewhat good posture. We have to be alert not to make a startled movement that could dislocate a joint. Someone with EDS has to be aware of their body on a different level of their mind.
The brain has to process much more information than someone who can perform many tasks from a deeper level of consciousness. Constantly having to multitask is tiring and it is no wonder that fatigue is one of the first symptoms of EDS. If someone with EDS is aware of this, it can be addressed at an early stage. Dividing energy between what must and can be learned must be learned.
But like many people with EDS, I was also diagnosed very late. Years of self-doubt, lack of understanding of my own body and shame passed. Dividing energy was difficult. Bread has to be put on the table and so the energy was often used up with work. My hobbies were sacrificed and I withdrew more and more so as not to unintentionally end up in situations where someone asked something of me that I could not fulfill. I locked myself up in my own body, I had to fight the battle with my body alone and I became lonely.
I got, and still am, in a downward spiral. The diagnosis of EDS gives logic to my body, my complaints. I have had complaints all my life and my personality has been shaped by it. I sometimes wonder what kind of character I would have had if I had not been born with this. I am an introverted person. Deep inside I deal with the pain, fatigue, with the shame of my incontinence, with the lack of perspective because the disease is progressive. Deep inside I scream at doctors who have not taken me seriously. Deep inside I am angry at everything and everyone because lifting my arm is so difficult for me to grab a product from the shelf in the supermarket. Am I angry because I have to force myself to squeeze my hand around the glass jar beyond the pain threshold. Am I angry because I still have to pay attention so that I do not relax my muscle tension and drop the jar on the floor of the supermarket. Am I angry because all these micro-tasks that are so obvious to everyone else make me withdraw into myself and notice my surroundings less and less.
The pain and symptoms caused by EDS worsen over the years. My body feels older than it is and this affects my self-image. Depression comes in different degrees. I realize this very well, and I know that I am long past a normal breakdown that can put a person back on the ground. I fight every day and sometimes I win and sometimes I lose. My body is in decline and I am waiting for a turning point where a choice has to be made where I should use my energy. I realize that I am more than my condition. What does not cost me energy is to be a decent person. I hope that those around me see this too and that I am introverted, not seen as arrogance, disinterestedness or laziness.
Living with Ehlers Danlos Syndrome 