Posts Tagged ‘rheumatoid arthritis’

Google Alert: Rheumatoid Arthritis

06.16.10

The other day, I realized it had been nearly a month again since I’ve written here. I don’t have a lot of RA-related epiphanies these days, I guess.

RA Guy!In any case, to find more fodder for this blog, because I believe this is an important perspective that is rarely shared with the world, I finally set up a google alert for the term rheumatoid arthritis.   Now, I get all the news on my disease, straight to my inbox — how convenient, if I’m not in a down-on-myself-because-of-my-health mood.

Yesterday, I got my first google alert on the topic.  And after sifting through a host of information on the the prescription drug market, I discovered RA Guy (http://www.rheumatoidarthritisguy.com/).  This chronic thirty-something writes about his superhero disease status.

His blog is so uplifting.  We are all superheros dealing with this crazy disease that attacks our bodies from the inside out.  Being a superhero is also a good reason for not revealing his true identity — which we have a policy about around here too.

The best thing about discovering RA Guy is his blog roll.  I’m so used to suffering in silence that I never thought to find others and talk.  Thanks for that RA Guy, and thank you google for your little pervasive technologies.

Now, all I need is a clever pseudonym and I can join ranks.

Illness Naratives & Chronic Twenties

02.16.09

S here.

For me, the impetus for this blog came from a medical anthropology class I’m auditing from my alma mater.

Second or third class into the semester, we started talking about illness narratives–the stories that sick people tell others about the effects of their illness (more here). The professor emphasized that the narrative has societal and psychological implications; it’s okay for a sick person to sit on the couch all day and ask that others bring him soup. But only as long as the person is sick, and only as long as a person with that illness could expect to be sick (societal or interpersonal expectations are a limiting factor).

So what about people who have diseases that don’t go away? I wondered about it for a long time. When I finally asked the question of the professor, she gave me the “oh, we’ll be getting to that answer” and left it at that… The question remains unanswered, at least in class.

M & I know how illness narratives go–there’s a good, a bad and an ugly side of it. I’ve had friends of friends say rheumatoid arthritis? At 19? She’s faking it. And I’ve had people be completely supportive. But most of the time it’s clear that it’s difficult for my peers to really understand.

In the case of my disease, people have heard of RA, but they only seem to know it in the context of their grandparents. There’s no real understanding of the physical symptoms or how they impact a person’s day or greater life choices (i.e. if I decide to pursue a degree in archaeology, I often wonder if I’ll physically be capable of participating in excavations by the time I’d be through with my Ph.D.).

I’ll always remember the day my boyfriend, N, told me, “I told my mom about your arthritis. She asked how bad it is. I had no idea it was such a big deal.”

N’s a pretty smart guy, so this isn’t a dig at him. But it’s strange to me that such a common illness, one that affects so many of our grandparents would be without a baseline level of shared understanding.

Then again, when I heard the diagnosis, I didn’t believe…

All these reasons are the reasons for this blog. For M and I, we have an outlet what few people around us really get. For others like us, there is understanding, hope, support and discussion.

Welcome. We’re glad you’re here.

Welcome - A brief intro

02.09.09

Hi,1583181151_e13e8fac6f_m

M here. I just wanted to give you all a brief intro to this blog and what it is all about. S   and I are both in our twenties and we both have chronic illnesses, albeit different ones.   S has rheumatoid arthritis (RA) and I have indolent systemic mastocytosis (or masto for short). Check out the About page to learn more about each of us and all about our conditions.

S and I have been friends for a while. It wasn’t until recently that we discovered that we have this shared “issue.” And like sunlight breaking through the clouds (I love cliches), I suddenly had a friend who understood me–someone who got a part of me that no one else, not my parents, not even my best friend and roommate A, could possibly understand. Because, unless you have a chronic condition you can’t know what it is like. And unless you are twenty and have one, there is no way you can understand the physical and psychological pressure and changes it imposes on you.

Now, this isn’t going to be a woe is us blog. Quite the opposite. We decided to join forces and blog about our experiences of being in our twenties and having chronic conditions both as a way to document our lives and to reach out to other twenty-somethings (or teens, or thirty-somethings, or whomever). Both S and I are great advocates of social media and its power to transform the world we live in, and so we are embarking on a journey to do just that, to span boundaries of space and time, to use technology to capture and share our unique experiences, so that our stories can transcend our lives and touch other people.

We hope that other twenty-somethings with chronic conditions will find this blog and identify with what we are saying. We hope that they will reach out to us–that we will find community with each other. But if none of that happens, at the very least, we hope that writing this blog will help us deal, day-by-day, with the struggles of being twenty-something and having a chronic illness.

Photo Credit: Abel Baria