Why I Won't Hide My Ehlers-Danlos Syndrome Anymore


It often takes a difficult time in our lives for us to re-evaluate ourselves and how we are living. It took me until I was seriously ill and unable to work at 29 years old before I majorly re-evaluated my life and what had led me to this point. I wanted to work out how my health had deteriorated so quickly and severely to the point I could not work for the first time in my life. I also knew I needed a better way to manage my health and well-being going forward.

Before this health crisis, I had been living with a genetic disease called hypermobile Ehlers-Danlos syndrome (EDS), which I was born with but had only been diagnosed with 14 months earlier. This caused me to suffer from various symptoms including severe fatigue, chronic pain and dizziness on a daily basis.

I had always had health problems relating to my condition growing up and had become very good at ignoring, and sometimes hiding, my symptoms. Once I graduated from university into my dream career, I kept my health problems a secret from most people because I was terrified of the impact it would have on my career.

I felt that I would be denied any progression or promotions if those I worked for knew about my condition, regardless of how good I was at my job. In addition, I didn’t want friends and colleagues to think of me any differently. In particular, I didn’t want to be pitied, so I became an expert at hiding the pain and fatigue I felt and pushed through a barrier that most people would not even considering approaching. It became the norm for me, so a lot of the time I did not even recognize how much I was pushing myself. At the time, I felt this was something I had to do and that I had no choice. But of course, there is always a choice.

I still wonder about how much physical damage I inflicted on my body during this time. I wasn’t doing anything that wold be particularly physically challenging to others, but I was pushing my body well beyond its own limits on a regular basis. My body cannot cope with what healthy people’s bodies can cope with because of my condition, and this takes time to be able to accept. I have no doubt that the strain I put on my body contributed to my deterioration.

I have also realized that the effects of this pretense were much more far reaching than just physical. To always be wearing a “mask,” is not being true to yourself. I felt that I had still had a grip on reality and I had a good reason to be doing this, but over time, I think you gradually lose sight of yourself and who you are.

I feel that I had started to lose my identity. This is because I subconsciously began to fool myself as well as those around me. If I cannot truly be myself to those around me, I don’t think I can be truly at peace and happy. It also starts to chip away at my self-esteem because I felt like I couldn’t keep up with those around me. My perspective of life became skewed – I started to focus on the things I can’t do rather than on everything I have overcome in life.

Until I was forced to re-evaluate my life, I had no idea how damaging this seemingly innocent pretense had been on my body, mind and soul. I am grateful that I have learned this now.

Going forward I want to live my life with hope and positivity, but with more honesty and truth. I would like use this knowledge to raise awareness of my condition and how to overcome issues related to chronic illness. I thought I was protecting myself and others from pain and discomfort, but I wasn’t. We must be completely and unashamedly ourselves. Life is not about being perfect. We are all perfectly imperfect in our own way.

“In a world where almost everyone is trying to be something, trying to achieve something, trying to impress someone, trying to please someone, being encouraged to just simply ‘be yourself’ – to really be yourself and being loved for that – is probably the biggest blessing and privilege of all.” – The Happiness Planner

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