My Time is Valuable: Or, How to Talk About Being Immunocompromised

Now more than ever, my time is both limited and valuable. Sometimes, though, my time — because I have RA — clashes with normal conceptions of time in our society.

Having trouble advocating for myself

Something I've been thinking about lately is how exactly to reconcile these notions, because there are times where I am not able to advocate for myself and my time in situations where I really need to. I might be overly tired and needing to rest, but mountains of readings, work, and grading pile up, especially as I have started new teaching and work positions after I have moved away from Florida in August.

In the middle of so much stress, I've had to realize that my time is valuable, that it is important, and that it is something worth fighting for and protecting.

That's all well and good, but the question now is: how do you actually accomplish this goal in fighting for your time? That's a complicated issue, especially when our society is imbued with ableism.

Talking about my RA has been helpful to me

The first thing I have started doing to advocate for my time is by actually talking about my RA. This might sound scary or somewhat cumbersome, especially when you are not sure if your employer, instructor, or anyone else in power will use your RA against you — perhaps in a retributive fashion. So, this advice will definitely depend on where you work and the culture of your work environment, but I have found that in academia, talking about my RA has been well received.

The things that I talk about include: how RA affects me every day; the types and quantity of pain I feel; the other commitments that I have; and the fact that I am immunocompromised.

Openness about being immunocompromised

These conversations can be rather lengthy and internally difficult to reconcile because it's difficult to talk about having a chronic illness when it potentially could affect your workplace environment and relationships. However, I found that in my experience, openly talking about the fact that I am immunocompromised means that virtual options for meetings and classes become more common, and this helps me in innumerable ways — the first being that I can reduce my exposure to COVID and other illnesses, but also in that virtual meetings are not as time-consuming or energy-draining as in-person meetings.

Alleviating social isolation

Second, openly talking about it helps me feel better about myself and my own condition. Many community members have written about how isolating a chronic illness — particularly if you're immunocompromised — can be in terms of social isolation. When you are away from your support system, you can feel that you are alone in trying not to feel much pain throughout the day; but the advent of Zoom calls, virtual meetings, virtual conferences, and the like — which all originated from these conversations about equity and access — can alleviate these feelings.

Equitable access for everyone is critical

This issue of equity and access is the point I want to focus on the most. We live, unfortunately, in a world that does not prioritize access and equity to all and often, in fact, works against these 2 concepts.

Talking about your illness and your immunocompromised status is a way in which to change that narrative, to build and sustain more equitable spaces. These spaces support the physical and mental health of everyone and should be prioritized.