Recently, I was in a conversation in which we were talking about how you find information — particularly on the internet.  I asked if she uses such search words as chronic illness or multiple sclerosis (which is what she has). She said, “I don’t like to think of myself as having a chronic illness and I don’t look for information about it. I use the web to look for news, shopping and random information about the world.” She loves Wikipedia. I asked her if she knew that WIkipedia has medical pages and she didn’t.
What struck me about this conversation is that she said she doesn’t think of herself as having a chronic illness and wouldn’t search for information about it. She’s a woman who has a successful career but also active symptoms that don’t prevent her from working but do impact the way she works.
I’m curious. Do you see yourself as someone who lives with a chronic illness? If you’re saying, “I do”, do you look for information (and where) that might be helpful? What search terms do you use? If you don’t, is it because you see the words chronic illness as negative? Finally, do you think that inhibits or helps you be as successful as possible in your life?
Rosalind
Nickie says
I have Complex Regional Pain Syndrome Type 1, and will search for information on chronic illness, or, more frequently, chronic pain. I was born blind, and have always learned that that can impact my life. I think it’s okay to admit I have health problems and disabilities, but I try to avoid dwelling on it.
That’s harder to do when symptoms flare, though. My philosophy is “yes, I have CRPS and am blind, but that doesn’t stop me from living life.” It’s not even that I’m particularly strong, just that I’m stubborn and want to enjoy life.
Rosalind Joffe says
Thanks, Nickie. I love hearing that you’ve figure out how to get what you need and have fun! Rosalind
SwampHag says
Interesting question. I have Fibromyalgia and severe allergies and when I was first diagnosed with FM I did my research. At the time (’93) I was not online so the research was old-fashioned. I currently work online in an area where such info comes to me but I do not actively research. I initially researched to confirm that yep, this is what I have, and went through a couple of years trying all sorts of treatments until I figured out what worked for me and the research stopped.
I have FM but, while it impacts my life in big ways, I work with it and try not to let it define who I am. I use the internet for MANY other things – games, entertainment, news – but rarely to actively research my own health conditions. The only exception is when a new person in my life wishes to understand it better and wants their own info, then I’ll supply them with links.
Ali says
I have Multiple Sclerosis and I do think of myself as having a chronic illness. In my opinion, I didn’t do that I wouldn’t be able to wrap my brain around what goes on with my body and in my mind. I am not ashamed of having MS and I don’t hide it. I don’t let it define me, but its certainly an aspect of my life and I can’t ignore it anymore than I can ignore my father’s diabetes.
Since I can’t ignore the fact that this is part of my life, I do frequently search for information (that is how I found this site). I usually use the NET. I will access the databases through the university that I work for, and search medical literature regarding MS. I look up info on living with chronic illness, stress management, etc. Sometimes I will use search strings such as “living powerfully with MS” or something along those lines to see if someone else is writing about a more specific part of what i am looking for.
thanks for being around and being positive.
Rosalind Joffe says
Thanks, Ali!
Rosalind Joffe says
Swamphag- I’m curious, how did you learn about this site – if you don’t search with these terms? Rosalind
Joan says
Rosalind, after much resistance after first being told about my illness, and that it would be something with which I’d have to deal with for the rest of my life, I do now know it’s considered a chronic illness. But, I don’t think I would have searched for information using the keywords “chronic illness” except if I were doing research like we did for our book. I’d probably search for my specific illness instead. I might search under autoimmune illness if I wanted to understand more about autoimmunity, though.
Joan
Anne says
I am struggling with this one. My particular chronic illness, CP, is one I learned about at 31. Very unusual by all counts, since it is a diagnosis made in childhood. Prior to the diagnosis, I accomplished quite a bit because I was living in what I now call an “ignorant bliss”. It was because I ran a marathon and tore a ligament in my foot that I learned of my diagnosis and had multiple surgeries. I now live with constant pain, tightness, and new sensations in the LEs because of new dynamics imposed by those reconstructive surgeries. My identity is now largely shaped by what I can’t do versus what I can and I’ve applied this restriction to so many areas of my life. I am now working to undo that damage and make a life outside of medical appointments and pain. I want to be successful despite the stigma of my illness.
I’ve used the internet largely to research how my illness affects my muscles so, with this information, I can find ways to mainstream the stretching and exercise I must do. In the beginning, I spent hours on websites (in casts, I had more than enough time!) developed by leading orthopedic and medical associations to truly understand what I was living with and how to manage it. While I have a mild case on the scales, it does not feel that way and has to be managed regardless! There is little published in the literature about adults with CP, especially mild, and I am basically forging new ground so it is equally interesting and frustrating.
Diana Brice says
Since being diagnosed with lupus in 1993, I’ve read everything I can get my hands on about it in print and on the internet. I search under lupus, invisible chronic illness, working with chronic illness and use links on sites I visit.Before taking new medication I research side effects and have saved myself from flares because of this. I consider myself a partner with the doctor in monitoring my treatment because he has many patients, I have only one (me). My medical condition is just another side of me like my brown eyes and 5 foot stature. I have had to change my lifestyle, but Thank God, I am still working.
SwampHag says
Hi Rosalind,
A friend who reads all sorts of feeds sent me a link to your blog and that question. 🙂 Now I’ve got it on my bloglines.