Two Twenty-Something Gals and Their Stories of Living with Chronic Illnesses
11.21.09
Today, I’m grateful for the Internet. It was allowed me to uncover a wealth of information about my disease (and many other things too of course), and the web has also helped me to connect with others for support.
11.20.09
Admittedly, it was harder for me to locate gratitude today. I’m in a bad mood. I woke up sore from pushing it yesterday with my class (teaching) and work load, and driving in the rain here is definitely fear inducing. I had to dig deep to find something to be grateful for because I was definitely not in the mindset.
That said, today I’m grateful for perspective. This disease does a lot of things that piss me off and remove me from my natural peer group of twenty-somethings, but as a positive consequence of this illness I am able to understand and empathize with my elders. Beyond having empathy for physical constraints that scare me about aging, I don’t have the superman complex associated with most people my age. I understand circumstances that force uncomfortable decisions. I relate to not being fully free to take big risks. Perpsective is bittersweet. But I’m grateful for it.
11.19.09
In advance of Turkey Day, I’ve seen many of my friends from the alternative healing community take up the torch of the Thanksgiving Challenge. The challenge is about daily gratitude — participants find one thing a day to be grateful for until the big day of gluttonous overindulgence.
Here on Chronic Twenties the purpose couldn’t be more profound. We blog a lot about diseases and our restrictions and the meds we’d rather not take, but we rarely have good cause (or remember) to blog about the positive. It’s hard to see the good stuff at the moments when we’re reflecting on our disease — having an illness doesn’t exactly feel uplifting.
However, in light of the Thanksgiving Challenge, I’m going to post one thing a day I’m grateful for until the big feast. 
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Today, one week from Thanksgiving day, I’m grateful for my yoga mat. It has been a vehicle for so much healing and positive change in my life. Before, I was an unhappy junior staffer at a communications firm; now, I’m a smiling yoga teacher. Who knew a piece of sticky, cushiony synthetic material could be so transformative?
What are you grateful for?
11.15.09
There’s a particular lifestyle associated with twenty-somethings. Binge drinking, nights of mischief and fashionably, attractive outfits (read: painful heels and clothes that don’t actually keep anyone warm) come to mind. Even though many people confine their overindulgences to their college years, the bar scene remains an important part of singlehood and twenty something social dynamics.
Unfortunately for us chronics, this lifestyle doesn’t actually do us any good. Truth be told, it’s probably not good for anyone, but we’re probably a little more aware of our own mortality… Invincibility goes with diagnosis.
Getting all dolled up to go out on the town with the girls is fun. Sure. Getting sloshed can also be fun. Trouble is there’s always a pay the price in pain.
For a chronic, a night out is a series of compromises and challenges. Before you’ve taken you’re first drink, you have to dress yourself. My roommates know my ritual—the number of times I change my clothes directly correlates to how I’m feeling in my skin. If my feet hurt, I’ll pick an outfit around my shoes (and probably change it half a dozen times in frustration). Depending on how peeved I am with my body, having to make a concession for my swollen toes could blow a whole night… High heels compound the pressure on the toes and balls of feet, so sore feet can feel really limiting for getting primped for an evening.
Aside from footwear, living in New England makes weather a consideration in preparation. As it gets colder, it becomes more of a problem (see my post on the snow).
Once you’re dressed appropriately and out the door, it’s time for a drink order.
Alcohol is no friend to me. In the elaborate dance of social interactions—nights out or business meetings—drinking is the lubricant that makes conversations happen with ease. But as a chronic, I have the tolerance of a gnat. One drink can be more than enough for an evening; with an already compromised liver, it doesn’t take much to get me to my tipsy, sweet spot. I’ve never been much of a drinker, but I’ve had to learn not to try to pace my friends’ refill orders.
The most challenging part of a night out is the next morning. Alcohol increases swelling. So the next morning can be a painful reminder of last night’s good time. I’d trade for a hangover an day of the week.
People say that your twenties are the best years of your life. Being chronic is a new set of premature challenges, but there can be balance. How do you balance your disease and your social life?
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.