My first major symptom showed up just a few months before I turned 18. Before that, I was dealing with some minor symptoms which we assumed were rather normal for a relatively sickly child with a not-so-strong immune system and assumed that my frequent spraining of ankles and injuring ligaments was probably because of my passion for dance.
Five years of internal resistance (18-22) + pushing my body in every way possible, 3 injections, a total of 20-30 doctors/physiotherapists, 1 open-surgery and a couple of minimally invasive surgeries later I was finally diagnosed with EDS Type 3 — a label that has since been attached to my name.
There was a major confusion about the terms “EDS Type 3” and “Hypermobility Syndrome” (and now we have hEDS) but I knew life wasn’t going to look the same, no matter what the world wanted to refer to this condition as. I remember knowing deep in my core, that life was at a major turning point and there was no going back. I felt so relieved when my day to day experience was validated and that for once, I wasn’t “too young to have pain”. At that time, having a label that summed up my experience, a logical reasoning behind my suffering mattered so much and that attitude helped me pave my way towards getting a diagnosis.
Sometimes when I look back, I believe everything had to unfold the way it did in order to bring me where I am today. I wouldn’t have been here had I not trusted a part of me that just knew something was off balance; that my body needed more of my attention. That persistency was necessary to find a label to my symptoms. Today, this label helps me in making practical choices towards my health. It helps me when I need to find the right kind of help or seek medical attention. It helps me when when I need to keep up with the changes and advancements in science and technology. However, this label doesn’t change anything for me on a day to day level. It doesn’t change the fact that my body functions in a more complex manner and has very specific needs which must be taken care of.
Of course, while the underlying symptoms of all those dealing with EDS (same type) might be similar, how one experiences these symptoms, the intensity and degree of severity can be vastly unique to each person. I share my symptoms and experience with the world and I’m fully aware that they may look very different for others. There is absolutely no comparison or competition as to who is more sick when the truth is that we are each living in a dysfunctional body which affects our internal and external experience.
I’ve now reached a point where I realise that it isn’t the label that matters as much as your understanding and response towards your illness. It’s YOUR personal, day to day experience and no body else gets to tell you that it’s not true or unreal.
Being honest about my health with myself and those around me has helped me immensely. It’s this transparency that created a space for me to then work towards acceptance. Dealing with an illness that is especially hard for others to wrap their heads around requires even more self-validation and trust. Even now, I have family members, friends and medical professionals who find it rather challenging to make sense of this illness. The question really is whether you can trust your experience rather than seek external validation.
Of course, we would need and hope that a few people try and understand what’s happening to us but we also need to realise that it is impossible for anyone to get it until they get it. I’ve realized that the more I understand my body and become aware of it,
1. The more I’m able to verbalise and communicate my experience
2. The less I need anyone else to fully understand it
What I do need and look for instead is for those around me to let me have my experience, give me the space I require, without rushing the process. To me, it’s more important that my loved ones understand that I am having a hard time and that I am in pain (or that they ask me how I’m doing or if I need help with something) rather than be able to fully relate to every little thing that’s happening to me. Honestly, It’s pretty difficult for someone outside my body to relate to it and accepting this fact makes it easier on me. It also takes some stress off others to try and make sense of an experience that isn’t even theirs to begin with!
Whether you have a condition that is medically ‘named’ or you’re still struggling to find a diagnosis, please continue to trust your body and its subtle messages. Often times, our bodies are much wiser than our minds.