Ooph. I am so glad to be sitting on my couch, listening to Adele, with nothing more pressing on my mind than whether I should make myself a cup of tea or not. The last couple of weeks have been extra busy for me. Not only did the new semester begin, but I had a public dissertation prospectus defense on Monday (I passed, yay!); extra advising duties Tuesday, Wednesday, and Thursday; an interview on Thursday; and a conference on Friday, where I had to present at 9AM. I made it as far as dinner last night and then had to bow out of the rest of the evening’s activities. I went to bed shortly thereafter and woke up 14 hours later. My joints, especially my hands and feet, are not terribly happy with me, but I feel quite accomplished nonetheless.
As much as I would like to return to living my life the way I was before I was really sick– or even the way I felt last summer when I got that first big flare under control (sad how I’ve adjusted my goal to being less sick rather than not sick, eh?), this week reminded me that with careful planning I have the mental and physical reserves to get through these kinds of personal and professional challenges successfully. I have to give myself credit too, instead of discounting my success, thinking “Well, two years ago this would have felt like a normal week, what’s the big deal?” In a world were many many people with lupus/RA diagnoses quit their jobs and/or go on disability within a few years of diagnosis, just working at all, let alone writing a dissertation while also working, is an immense accomplishment. And I need to remember that. I also try to remind myself that I’ve barely scratched the surface of treatments– it won’t always feel this bad (I hope).
So I’m officially a “PhD Candidate” now; time to buckle down and write the dissertation. No more coursework, no more required teaching… someday soon it will be time to move on to the next phase of my life. I’m doing my best to look toward it with excitement rather than trepidation. We can’t know what the future will bring, but I suppose a positive outlook never hurt anyone, right?
“Between stimulus and response there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom” —Victor Frankl
I’m not sure what has changed in the past few days, but I feel like I’ve gone from a mental space of worry to one of relative peacefulness and acceptance. It doesn’t feel like anything has changed inside of me; in fact, I feel just as lousy as I did last week—the usual MTX gripes and joint pain along with a bonus infection. But something has definitely shifted.
This blog was written as part of the Chronic Babe blog carnival on new years resolutions.
As I think I’ve said before, I’m not really one for new years resolutions. I tend to save my personal resolutions for my birthday, and my professional/academic resolutions for the beginning of the school year. For me, those times feel more natural for goal-setting and making changes. Plus, January and February have always been the most depressing months of the year for me—the holiday decorations are down, it’s dark, cold, and wet, the second semester is dragging along—not exactly the best time to start lecturing myself about all my perceived problems and failings.
About a month ago I read Neil Fiore’s book The Now Habit which is all about breaking the procrastination cycle (ironically—and perhaps unsurprisingly—I was reading a book on procrastination in order to avoid grading papers). Someone had recommended it to me and it seemed like it might have some useful tools for helping get my dissertation written. It’s pop psychology, so don’t expect any elaborate, grand-unified-theory explanations. But I found his observations and solutions for negative self-talk really helpful.
Basically Fiore suggests that instead of approaching the tasks that one dislikes (or that feel challenging and/or threatening) as things that one “should” do— un-enjoyable activities require chiding and self-punishment to complete—one can instead use language like “I will begin X project today [or tomorrow, or on a specific day] and work on it for X amount of time.” By simply resolving to start (or continue) a project, and then following through, one must take responsibility for doing just that. This also helps to overcome the initial inertia that often causes procrastinators to obsess and make themselves miserable over a task or project and then only start it at the very last possible minute (this describes my relationship to grading papers perfectly). Fiore’s argument is that this small change in language (and the behavior it leads to) can release one from a great deal of guilt and misery, freeing up time to do enjoyable things without a black cloud of “shoulds” hanging over one’s head.
What, you might be asking, does this have to do with chronic illness or new years resolutions? I find that I often chide myself for not being more productive on my bad days, making those days even worse. Rather than treating my tired, aching self like a petulant child, I will try to speak to myself more kindly, as I would any ill person I encountered, taking my own pain seriously.
So my only resolution for the new year is to continue finding ways of being kinder to myself, a resolution I originally made when I turned 30. For me, this means learning coping strategies that allow me to enjoy my good days more; treating myself with the same kindness that I treat others, rather than holding myself to an impossible ideal; avoiding toxic and disrespectful people, especially in my personal life; and accepting that some days will be better than others, but having faith that the good days will come, just not always when I expect them. I will determine what I want and need, and try to ignore the disapproving voice that lectures me about what I should or shouldn’t be doing.
Living with chronic illness is no picnic, and I think sometimes the worst thing we can do is think about all the things we’d like to change about ourselves, rather than all the positive qualities we already have. Most of us are incredibly caring and empathetic people, we just sometimes forget to extend that care and acceptance to ourselves. Breathe. Sleep. Love. The rest will work itself out.
I’ve been thinking a lot lately about anonymity and privacy on the web, and I have to admit I’m feeling mighty ambivalent. Which is not to say indifferent; I mean ambivalent in the “moving back-and-forth between two poles” sense. I have strong feelings about both positions.
When I started this blog, it was in the months prior to my initial diagnosis, when I was sick and undiagnosed, stressed out by my PhD exams, and grappling with the emotional fallout of a breakup. I was just looking for a place to vent a little, and to write things down so that I might get some sort of pleasure or closure by ordering and narrating the events of my own life.
But then I got diagnosed with lupus, and I realized I couldn’t talk to very many people in my everyday life about what was going on. So I joined several forums, I created a Twitter account, and I started collecting (and connecting) to other blogs about lupus, arthritis, and autoimmune disease. Somewhere in the middle of all of this, I applied—and was accepted— to be an ACR Advocate for Arthritis. Suddenly I had gone from Megan: Autoimmune Girl Blogger to Megan: Autoimmune Arthritis Patient Advocate.
And here is where the great ambivalence set in. I know that I could be a more powerful force as a patient advocate if I revealed my full identity, but I also know there are consequences to the choice to “come out” and tell my story publicly.
I say a lot of revealing things in my guise as “mirroredlens.” I talk about my diagnoses, my meds, my pain, and my interactions with medical practitioners. I write about my experience of being visibly and invisibly ill and disabled, and how this affects my self-identity, my being-in-the-world, and my goals and fears for the future. I do this because it helps me make sense of my life. But I also do it because I’ve relied on the same kind of first-person narrative from other bloggers and writers to guide me and comfort me, and I want to be able to offer the same kind of guidance and empathy in return.
Despite all of my “virtual” honesty, the group of people I interact with face-to-face who know the details of my illness is relatively small. Partly this is because my diagnosis has been provisional for so long and I prefer to do as little explaining as possible. (“Huh? Wait, I thought you had lupus. Now you have RA too?”) But also because a) I am allergic to pity; and b) I am all-too-aware of the implicit and explicit discrimination toward people with disabilities. And it’s that second part that keeps me from removing my not-particularly-opaque veil of anonymity.
Now clearly I haven’t done a whole lot to obscure my identity on here– I have a photo (yes, that’s really me) and I use my first name. But I haven’t made any explicit links to other parts of my life, online or otherwise. Why? Because I am still (meds and disease activity willing) committed to pursuing a career once I finish grad school, and I am concerned that by disclosing my status too publicly I will jeopardize my chances at an academic job. (Google has a very long memory and the academic job market is ridiculously competitive. The reach of the ADA only goes so far.) It shouldn’t be that way, but it is.
So for now, my identity as a blogger remains separate from my identity as an academic, and my advocacy work falls somewhere in the middle, tenuously connecting the two. I know that I could be a stronger advocate by making those links legible, and I would likely also strengthen my academic work on disability theory by disclosing my status as a person with a chronic illness. But I also know that there are long-term consequences to that kind of candor, consequences that I’m not yet ready to negotiate.