The Mighty Logo

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

The most helpful emails in health
Browse our free newsletters

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.

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

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

Thinkstock Image By: Archv

Originally published: April 6, 2017
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home