The story of Ruby
“Of course, I get the rare disease!” I exclaim, not knowing that the battle would be life-long and also, not realizing that there is no current cure.
I have chronic ITP. (Aka thrombocytopenia) ITP is an autoimmune condition where your body mistakenly attacks and destroys blood platelets because it thinks they are threats and invaders to the body.
This has landed me in the hospital quite frequently, and I have had two near-death experiences, one a few months ago.
A person should have about 200,000-400,000 platelets in their body. Platelets help blood to clot, and when they are below 50,000, a person is at a higher risk for internal bleeding or bleeding that will not stop. I was in the ICU with platelets at just 2,000.
With this disease, it is sometimes very difficult to tell when I have an emergency because my body doesn’t always show it. Sometimes I will get bruises and red dots called petichae everywhere and be completely fine. And other times, my platelets drop unexpectedly with no warning.
As someone who is young and has other chronic illnesses such as Lupus, fibromyalgia, alopecia and thyroid problems, it’s very hard when people look at me and don’t understand the scope of what I am going through just because I have good days or “look” okay. I currently can not work a 9 to 5 job nor support myself on my own. Luckily I have a great support system, but there are so many out there who are struggling.
Because ITP is a rare disease, it’s hard to find others to talk to about it. One of the hardest symptoms, other than how scary the nature of the disease can be, is the fatigue. I have to take frequent naps, and have a tiredness that doesn’t go away. Sometimes, all I can do for that day is sleep.
I’ve become an advocate for disability justice, and as an artist it is one of the most important things I do. It’s vital to raise awareness of the vibrant, diverse lives that disabled folks have, as well as taking their concerns and struggles seriously. It is more important than ever in a global pandemic to combat ableism, inaccessible systems, and the inequities that disabled people still face.
I’m sending love to all of those out there with rare diseases and those whose conditions baffle their doctors! You are not alone, even if you are rare ❤