-costuming with an invisible disease and disability

Straight off the bat. It’s not easy, and life is not the same after developing a disease that slowly (or indeed abruptly) interrupts day to day function.

So how is it that I still have enough time/energy/ability to make the stuff I do?

 

First of all don’t let the website fool you. I was lucky to have a huge amount of hands on as well as theoretical understanding of costume as an art and a craft before I put it in to practice. I knew I wanted to make costumes by the age of 12 but had no idea it was even remotely possible until well after I had gained a BSc in biology and a Diploma of Performing Arts. And by then I had started to need a “real” job and soon after that got sick.

So my actual output of work is incredibly slow but the few hours a week or month I do manage to work I am able to get a lot done. I most certainly could not do this as a living nor indeed as a part time job. I simply work at a very different time frame.

 

So what is it that stops me? Not ability! Again the years of research and study and mental practice mean I can problem solve quickly. However I do experience extreme pain, fatigue and physical inability to do some tasks. Most tasks physically take a while but some I outright cannot do.

 

My disability is in my hands- there is permanent long lasting damage and bone loss. This permanently limits my ability to hand sew or put weight on my hands. My disease cause destruction of tissues around the joints so I also have periods where the disease is active and limits my ability to walk. Or get out of bed.

 

I have also developed other issues such as low cortisol levels which results in fairly dramatic (and apparently melodramatic to observers!) health crashes. These cause me to lose the ability to stand, and be unable to speak. So far I have been lucky, but being unaware of their cause I spent the last few years looking in the wrong direction and blaming myself.

 

Costuming is my passion, however my very first love is the stage. That is now well off the table so I do not dwell of could have beens. Costuming has helped keep me from being depressed, it has been a creative outlet and a distraction. It does however also cause a fair amount of stress. Not in and of the making but the social expectations of costumers and cosplayers.

 

This website has developed out of my own experiences as an artist and someone who has struggled with inner demons and physical disability as well as experience in trying to learn and develop skills in this art form.