“How much dancing will there be in this show..?” That’s one of the first questions that goes through my head when I’m looking for a new acting job. And no, not just because my version of dancing isn’t unlike a toddler’s on a day of high sugar intake. It’s because when you’ve got ankylosing spondylitis, dancing for hours straight day after day is not the easiest and the most fun you’re going to have.

 

I’m 27 and I’ve been working as an actress for almost 5 years now. I started showing symptoms of AS on and off when I was 20. I suspect that a dose of salmonella picked up on holiday in India could’ve triggered my disease, but i didn’t get a diagnosis until 4 years later, when pretty much overnight i became crippled by the pain building in my hips and back.

Rehearsal hours are pretty similar to a regular 9-to-5 job, sometimes working on Saturdays too depending on the contract. Then, when the show goes up you’re working as many shows as scheduled, 6 days a week. It can be very demanding and requires a good level of stamina to maintain the performance energy expected from you for the length of your contract.

 

Back before my diagnosis I didn’t have any particularly long jobs, which looking back was a blessing in disguise! I remember being on a concoction of every type of the strongest painkillers available to me, just to physically make it through the day. I moved back in with my parents who got me through the worst days, sometimes driving me all the way to and from work to save my energy and let me do my dream job.

 

Dealing with the chronic fatigue was also an interesting curve ball in a job that requires you to be the best version of yourself 100% of the time. Sometimes I was so lethargic and suppressed going in to auditions I’m sure they thought I was on drugs or something. Not ideal when you’re about to start your first professional theatre job which included a week long tour around the Ireland after the original theatre run. As someone who naturally has a very positive and upbeat personality, all this was extremely frustrating for me.

The most difficult part of this experience was not being able to talk about it. Mostly because I didn’t know how to easily explain it myself ! I was totally in the dark about what was wrong with me at this point. The people I was working with at the time were some of the best, and I’m still friends with them today. But they didn’t know what I was dealing with every day and that made me not only pretty lonely but scared. Even my agent didn’t know much about it, but was ridiculously understanding when I had to email him to say I wasn’t physically up to certain jobs at that time – ones with demanding physicality, long tours etc. He didn’t ask prying questions which I was grateful for because i didn’t want to talk about it. He just accepted I had something going on and needed to pull back until I got a hold of it.

 

After my diagnosis I was finally able to open up more about it. Suddenly I started to understand why and how I was feeling and moving the way I was. I wasn’t so shy about talking about it as well!
Before that I was afraid to tell colleagues about AS because I thought people would see weakness and decide I wasn’t up for the job. I was trying to do everything I could to show them i wasn’t anything other than a young, active woman they wanted to see, who was completely in control of herself. I’m laughing out loud as I write that by the way!

 

After I started opening up to my colleagues and friends everything had changed. Finally I had the help and support from those I was spending most of my time with, and they genuinely cared about my well being! I was so well looked after. They really tried to understand and I even found myself being congratulated on a daily basis for getting through it with what I had.

Looking back, I can see the change in my demeanour. I’ve relaxed and started to enjoy my life again. I stopped being so hard on myself and my body, stopped blaming myself for why I was now more physically limited. I started finding it easier to push through the fatigue and the pain and even found that dancing helped when coupled with a good half hour of severe stretching before and after – it was here that I found the wonder that is yoga.

 

I also learned that I needed a little more than the half hour physical warm up casts do together to get me ready for work, so I started walking, getting an extra half hour to stretch out the stiffness. This is still in my work routine to this day! I joined the gym and worked with a personal trainer to find an exercise regime that would build my strength and stamina whilst safely navigating my flare ups and back pain.

 

Then almost a year after my diagnosis I injected my first dose of Humira. This drug has changed my life and I’m incredibly lucky to have something that limits my pain and discomfort to the extent it does. To those who are waiting to start it or another biologic – I am with you! Be patient, it will be worth it.

Giving people a chance to understand something that I was attempting to learn how to live with was a turning point; Not only for my career but for dealing with AS as well.

 

Mental health is a strong concern with people in the arts, generally, as to have your work opened up to scrutiny and judgement can take it’s toll on your emotional and mental stability. I’m lucky to work with people who understand the need to support each other no matter what.

 

Fast forward four years to now, I’ve had an amazing, busy year and I’ve just finished 5 weeks of rehearsals followed by a 6 week long run playing Gretel in ‘Hansel and Gretel’ at the MAC in my home city of Belfast over Christmas. We did two shows a day with few days off (I had less days off because I was busy gigging with my band The Swingtime Starlets on the side) and it was the most physical, and rewarding thing I’ve ever been a part of. I was looked after every step of the way by the incomparable cast, crew and entire staff involved in the production and the building.
Being able to do the job I grew up dreaming about without AS being the forefront of my mind is something I’ll never take for granted. And yes, I can hear you asking – I did have to do a lot of dancing in ‘Hansel and Gretel’ and guess what… I NAILED it!

 

Rosie is a rising star, actress from Belfast. You could see (or hear) her in CBBC’s Pablo series, Belfast Lyric Theatre and the most recently MAC Theatre. She’s also a part of the ‘retro’ trio The Swingtime Starlets. All that while living with ankylosing spondylitis. Look out for Rosie! She may be coming to the theatre near you soon!

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