InvisAbilities
Hello everyone, sorry I was silent all weekend. I spent Saturday at Book Camp Toronto 2010, which was a blast, but was a VERY LONG day! So Sunday was spent lying down, though it also brought me some exciting news: I am the new vice chair of InvisAbilities!
InvisAbilities is a new organization at my university which works to promote awareness and support for people with invisible illnesses. Invisible illness are those illnesses that, while difficult to manage, show no physical signs or indicators. Examples include fibromyalgia, depression, chronic migraines, asthma, lupus and seizure disorders, though those are just a few examples.
I am so excited to be a part of this group because it is going to be really important for the people involved. Having a serious chronic illness is difficult enough, but the fact that there are no physical signs sparks a number of other emotional and practical issues. For example, I have a friend in the hospital from an accident, who is suffering more from her fibromyalgia than from her other injuries, but the doctors are dismissing this, as they cannot see, and therefore struggle to understand, her fibromyalgia. I am thrilled that I can be in a position to offer support, assistance and advocacy, and I know I will receive a lot in return.
In addition to networking, providing understanding and promoting awareness, we have a number of projects that we plan to jumpstart this year. We are going to start a website, which should provide great information and support (I’ll be sure to let you know when that is up). One of the things I am most excited about is our buddy program, which will pair incoming students suffering from invisible illnesses with an upper year student who can help them meet their unique needs in adjusting to university life. I know that something like that would have really changed my first year experience at university.
Those are just a few examples of work that we will be doing over the next year, and I’ll be sure to tell you more as events unfold. If you are a student or administrator who is interested in starting an InvisAbilities group at your school (it doesn’t need to be a university) please contact me. I am hoping to work with my group to put together some steps and tips for starting groups like this, and I will be sure to keep your contact info so we can work with you.
Thanks Jane. Your compassion and support, especially during this difficult time means so much to me. Thank you from the bottom of my heart. I know that in your new role you will be providing that same level of advocacy and empathy for countless of other individuals. Congratulations and good luck.
P.s. Some good news on the knowledge of medical staff. One nurse said while they couldn’t give me a heat pack due to infection control she allowed my family to bring mine in from home. That has helped my shoulder pain a great deal. But still a way to go as one of the doctors dismissed my pain as general aches from being in a major car accident.