Part of having an autoimmune disease, and perhaps the most important thing for others to understand, is that it is systemic. This means it affects your entire body. No matter the part of body your specific disease affects (arthritis affecting joints, Crohn’s disease affecting the lining of the digestive tract), the disease will still affect every other part of the body as well. This leads to a whole slew of medical issues and can lead to certain disabilities that aren’t technically associated with your disease. On top of that, a quality of autoimmune diseases is a lowered immune system, meaning it is quite often easier for people to be more susceptible to various viruses and infections.
People are usually shocked when I explain to them the extent of my disabilities. I understand that this shock is partial because I have what is generally called an “invisible illness.” It is not readily visible, which can be a blessing and a curse. Another side of this, however, is my age. I am 19 years old. Growing up with my arthritis, and then having back surgery when I was 13 years old in 2010, people were frequently amazed that I could be “this” sick considering my age (this usually turns into me cracking a joke that “I may be 19 years old, but I have the body of a 90-year-old!”).
Despite this usually being said with a smile on the person’s face, the comment about youth and insinuating that they cannot be sick is inherently problematic. It essentially erases the experiences of sick and disabled youth, especially physically disabled youth. This mindset carries on throughout generations, causing youth to be ashamed of their limitations. It creates this idea that it is impossible for the physically impaired kid to be a “kid.” Because being a “kid” is apparently about being free spirited, going outside, partaking in physical activities and more. It cannot possibly be about memorizing all of the medications you take, limiting physical activity due to pain and being on first-name basis with your many doctors!
Believe it or not, this ideology also makes it harder for disabled youth to experience accessibility. At my college institution, for instance, there is currently a large rise up of disabled youth fighting for their rights to accessibility. My belief, however, is that because it is so “far-fetched” for youth to be disabled, accessibility is not much more than an afterthought for youth-based institutions such as college campuses. This is opposed to, say, a nursing home, where disabilities are to be expected with old age, and, therefore, accessibility is placed on a more important level.
I dream of a day where the idea of disabled youth is not such an "out of this world" thought. The disabled population exists among youth, and that needs to be something that is common knowledge, and not something that shocks the majority of people. Until then, I will take it upon myself to continue to remind the general population that we do exist.
