Why I Have to Keep My Chronic Illness a Secret to Keep My Career

Before my identity was intrinsically intertwined with my (sometimes visible) invisible illness, I identified first and foremost as a performer and singer. I started at a very young age and it became my dream to perform as my career. Long story short, my dream is in the process of coming true after working hard for many years through university and postgraduate study.

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

I have had health problems since I was 3 or 4 and it only slightly impacted my performing career as I was growing up. My health got significantly worse in my early to mid-20s and I was subsequently diagnosed with hypermobile Ehlers Danlos syndrome, postural orthostatic tachycardia syndrome, and polycystic ovarian syndrome (with possible mast cell activation syndrome).

I am open about my illness with my family and friends and I am pleased to say that they are all pretty understanding and supportive of me and my limitations and compensations. But in order to continue to give myself the best opportunity to succeed, I have to keep my illness a secret in my professional career.

Like other industries, the performing arts openly strives for perfection: perfect technique, perfect execution, the perfect production. Increasingly, they strive for hyper-realism, which means no obviously fake stage falls, more realistic stunt-like actions, and more modern costuming. My propensity for dislocations, sprains, and injuries, plus my current inability to run or jump due to still recovering from knee surgery means I can struggle to perform certain actions that the director wants. I also can’t hide any braces or taping under costumes so easily. Mostly, I can explain it away as a recent injury (which is often the case anyway!), but the more work I book, the more I’m going to struggle to explain it away as a current injury. I would dearly love to be open about my illness and the compensations I need to make, but I’m afraid that due to the competitive nature of the industry, I’ll never be offered work again as I would be seen as “damaged goods” and unable to fulfill the director’s vision.

I hear you asking, “Why don’t you find another career that takes into account your illness, where you don’t have to hide?” For one, I’m a stubborn person and I’m not willing to give up on my dream until my health forces me to do so. Secondly, the performer’s lifestyle that I’m chasing actually works really well for me. It’s essentially working in a project-to-project environment where I can take a break in between. Also, the rehearsal days are approximately 11 a.m. – 9/10 p.m. with lunch and dinner breaks in between, and sometimes you’re not required all day. I’m not a morning person, so this works with my body clock. During performance time, you have the whole day free and only perform every second evening for several weeks at a time, so I can perform to my best as I can rest adequately.

The fact that I’m spending time doing something I love also energizes me, so I get more hours a week of usable energy than I would doing another job that I’m not passionate about. I also know from having done retail, hospitality, and office work that my body suffers in those jobs, so for my health, it’s in my best interest to keep away from that type of work. So, it’s worth chasing a dream that works with my body and how I work best.

As much as I love what I do, I hate that I have to keep such a secret. Not just because I feel a tad fraudulent, but also because it is very taxing to hide things. If I’m in pain, or struggling with a move in rehearsal or on stage I have to grin and bear it. If I’m struggling with fatigue, I can’t show it. I can’t talk to anyone about my struggles, or as sometimes has happened, my successes where I have pleasantly surprised myself. I have loved ones at the end of the phone that I can talk to, but having to wear a mask for those long days for weeks, sometimes months at a time, is just awful. I wish I was famous as once you have “made it” and your name is respected in the industry, they don’t care what concessions they have to make, as long as your name is on the poster and will draw the crowds.

I can’t wait for the day I can be open about my illness without fearing for my career.