Thursday, February 27, 2014

Why Do You Share About Your Illness Online?

This blog post is a part of a blog carnival for Restoring Quality of Life: the official blog of the Partnership for Palliative Care. You can find the call for submissions here. Also, hey, do you want some mood music? Click play below so you can listen while you read :)


I fell ill in 1993 when the internet was just starting to be a thing and there wasn't really anything out there for kids or adults with rheumatic diseases. Now there are resources - but not enough and not many from the viewpoint of a sick kid growing with their disease. I thought my little family (my sister and mom also have Still's) was an anomaly. I never knew fibromyalgia was a thing either, or that for me the onset was around the same time as the Still's hit.

I began blogging as a way of explaining to him what my disease was like, what it could do, and what I felt like. It was a way to share things with him that, even now, can be hard to share face to face. It was a way, too, for me to explore my illness as an adult. I didn't know many of the issues that could happen with me, and quickly learned that some of the issues I did know about were outdated. I explored medications and, finally, doctors. I've gone from a college sophomore in every sense of the word to an educated woman helping to educate others. All of this happened because of this blog.

When I was in college, I made it a point to not share that much about my health - our officiant for the wedding (one of my favorite college professors) had no idea until recently that I'd been sick virtually my entire life. I grew up as a child with others making fun of me for being different, and I wasn't about to subject myself to that as an adult in a new and strange land (frozen Wisconsin). As I became more involved in health issues and activism, it became harder for me to hide my disease - I also stopped wanting to hide. I began to meet others who, like myself, have dealt with Still's specifically or other rheumatic diseases. I began to really learn that I wasn't alone. I had a place where I could go to ask questions of the more experienced patients and learn what was really normal for us and when it was time to go to urgent care. I've also played those roles for others - counselor, friend, priest, nurse, etc. I've helped track down resources that have saved the lives of virtual strangers, and that creates a feeling I can't even begin to put into words. I have been saved in a similar fashion, and I can't begin to express my gratefulness for that.

2012 was an amazing and terrible year all together. My sister had a baby in August. Along with Missy came the fears a chronically ill mother or other relative faces - will that baby be sick like me? Will I make the right choices for her? Will there be treatments that work? Will there be doctors who have a brain? I began to ramp up my advocacy to help that. I wanted there to be resources for Missy if she does get sick, and I wanted my sister to know that everything will be okay. In December, I lost one of my closest friends to an infection that should've been caught easily, but wasn't as a result of gross negligence on the part of doctors. I grieve over losing Laura every day, but I also know that it brought me closer together with some amazing people - and it fueled that fighting spirit in me even more.

As a result of some of my work the past almost seven years, I've had the luck to experience talking to politicians - and will be going to the Arthritis Foundation's Advocacy Summit at the end of March to do so on a larger scale. I've been able to help legitimately make changes that are starting to make differences in the lives of others on a larger scale. And, damn, that's an addicting feeling.

I blog for myself, for my mental health - because it saved my life. I blog because I know it makes a difference to people. I blog because I want a little girl to know she isn't alone - and I want to be a resource so that when she starts dating and looking at colleges, she has someone to talk to about all of that. I want her to know tips and tricks on how to look and feel more normal. I want her to know that she should be as educated as possible on her disease(s) because it might save her life. I want her to be able to talk openly with a significant other on their intimate lives and how to improve that so she avoids falling into the divorced-due-to-illness statistic. I want her to know her rights. I want politicians to know what's happening and how they can help change things for the better. I want to raise awareness in the public over the issues we face, both as children and as adults. I feel like I could go on forever about this.

Why do you share about your illness online?

1 comment:

  1. What a thoughtful, empathic and brave essay, Kirsten. I've had RA since 1987 (probably before, too, though I didn't know enough about the disease or the symptoms to identify them as connected to RA). Knowing what RA can do, and knowing how similar Still's is, I'm just gobsmacked by your toughness and grace. Thank you for your advocacy and for caring like you do.
    I started blogging because (selfishly) I hoped to find others who were living with this disease--I've never known anyone who did, so I felt incredibly isolated. And, because I was living successfully with RA, I hoped I could offer others some empathy and understanding, and maybe pass on what I could to help them, too. RheumaBlog, simple as it is, has widened my world incredibly. Without it, I wouldn't be here today, talking to you.
    I hope you're feeling well and staying warm. Sending a hug your way ... :o)

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