Originally Published: Thursday, 19 May 2011 09:59AM
Things I have learned being Chronically Ill.
I have met a few people over the course of my life who have mentioned that perhaps I talk about being ill because I want pity. Even as a teenager. I can see why that would seem the case. I do talk about certain aspects of my chronic illness quite a bit.
Sometimes it’s because I am still getting used to it myself, sometimes it’s because I think I am talking to someone who might care.
When I am on twitter, I am talking about it because I am talking to other people with the same symptoms, and I am trying to get feedback. Other times it’s to create awareness. There are also other things I am very interested in and with many of my friends I talk about those things at great length.
I have learned who wants or needs to hear my story, and who doesn’t want to hear about it ever again. That would be one of the first things I have learned, how to compartmentalize or categorize people. Also, who are friends and who are not. And wow, you would be surprised who does and does not want to listen. When I whine to a friend about not feeling well, I am prepared to be, even happy to be on the receiving end of at least twice as much from them. I want to hear what is going on; I want to hear what is bothering him or her. I understand that it cuts both ways. I also don’t care if what my friend wants to talk about is the same kind of issue I have or not.
Just talk to me. I am here.
I have learned so much about relationships being chronically ill; I could write a million blog posts on just that topic.I have also learned about navigating both the medical and insurance mazes in the United States. I have learned to be my own health advocate, and how to, hummmm, manipulate my way through to get what I need. It’s not about what I want, but about what I need.
I have learned enough that the very same people who accuse me of wanting pity, the people who get annoyed, come to me for medical advice. These eye-rollers come to me when they need information about how to get through the medical system. I just help them, give them advice, and say nothing about how they are not very receptive to my experience when it does not help them.
More that I have learned: I have found new ways to entertain myself. I don’t go out much, so I have found that there are ways to have fun right from this chair. Be it on the internet or the iPad or with my Wii. I am having some trouble with books because I cannot focus well on some things for very long, but I am hoping to work on that. I have rediscovered new levels of my sense of humor. I am learning to be funny again. To entertain with my written words, and to make myself and the people around me smile. I am learning to learn. I am keeping an open mind to new things, and I am trying to be open to suggestions about how I can make myself a happier, and fuller person.
When you discover roadblocks, you have a choice. You can keep butting your head against walls, or you can find new paths. I am looking down new paths now, and I see some excitement in my future. Since I have been chronically ill, I have found new friends, new music, new fashion, new treatments; all from my friends on the web who have been around for me thick and thin. If they get annoyed with me, they tell me to shut the hell up, and give me a positive direction to go rather than leaving me twisting in the wind. They even love my dogs and my kid and my parents and my grandmother. It’s kind of crazy, I know but go figure, it’s out there.
Update, 2015: I am not as angry as I used to be. I am, however sad. I am sad that there are people in my life that are missing out on some of the best parts of me that have ever existed. They simply cannot wrap their heads around the fact that I will never be the person I used to be. But, what I have become has inspired many people to live fuller, happier lives.
While the nature of my illness has changed, unless I am establishing a point of common ground, informing someone within a small circle of trust of something new (or a change), or answering questions, I am done trying to explain my illness to anyone in my life. My support group, my podcast, and other formal (and informal but well established outlets) have given me places to talk about what I need to talk about in a safe, non- judgmental place. I will never stop my campaign for what I believe is needed in the chronic illness community: Education, Advocacy, Support… #ChronicallyAwesome