Photo: Laurie Caffery Harris

Hi, I'm Kate!

I have a POTS – and a lot of strong feelings about medicine's treatment of women throughout history. Welcome to Hysterics.

Fairness and Self-Care: Where is it Safe to Compromise?

Fairness and Self-Care: Where is it Safe to Compromise?

The notion of fairness is something that seems to be coming up in all aspects of my life - notably in my conversations with friends, colleagues and family regarding my illness. Now that I’m off the roller coaster of diagnosis, there is a new expectation to regulate to this new normal. Regulating means shifting from a position where my key objective was to advocate to doctors to finding compromises in my life that allow for a balance between my needs and that of the people I love. In the last week, have had more conversations with my employers, trying my best to explain the episodic and largely unpredictable nature of my illness, advocating for myself but at the same time trying to compromise. In the end, my job means more to me than just a way of making ends meet – I care about our mission, I care about my place there and more than anything I care about my team. We have accomplished nearly impossible things in the last year and they have shown me that I am capable of more than I ever imagined, so the idea of selling them short or not being able to fairly contribute has been one of the most difficult parts of this process. To use an analogy that is ridiculous for someone as fatigued and uncoordinated as I am, I know that the only way to be there for my team on game day is to sometimes sit on the bench – or the couch, in my case. I have lessened my hours and shifted to working from home for some of that time. This compromise is still unsteady and is something that we will have to gauge together.

The idea of regulating my symptoms and trying to manage my disease with the input of others makes me extremely uncomfortable. It isn’t something that we talk about much, particularly in the vernacular of activism. Self-advocacy is key, self-care is the pinnacle. However, in the world sometimes those standards are shifted slightly. In an ideal world, compromise and fairness wouldn’t be a concern. I would be ill and because of that not-so-simple fact, I would be able to make the choices that preserve my health and say screw it to everything else. In my experience, however, I also factor in the fact that I am lucky enough to have the option of finding balance. Because of that, and in order to maintain this aspect of my life that is just as critical as my physical health, compromise is key. But where is the tipping point?

While fairness in my work has taken up a great deal of my emotional bandwidth lately, I cannot ignore the other areas where this is true as well. In my relationship I am finding myself having to check my focus and move away from a self-preservational selfishness that has gotten me through the last six months. Now that I am diagnosed with a chronic illness, fairness has come back into the picture with my partner. While he has been incredibly supportive and has cared for me spectacularly, I have to now not only acknowledge his emotional labor but also reciprocate it. Even when I feel like my tank is at empty, I can no longer disappear inside myself on a bad symptom day. This is now our new normal and part of that means finding every means possible to even the playing field again. This is going to take more than a few conversations, this will be an effort made every day and a rewiring of my brain to not bristle at the idea of letting go of small levels of self-care for the needs of my partner. In the end, being in a happy and equitable relationship can include this self-care as well as sacrifice.

***

This weekend I did my first road trip since getting sick. I used to drive home or see friends around the state once a month or so. Throwing my dog in the back of the car and trekking down the mountain for a day or two was the norm. Once I became ill, there were several months where I couldn’t drive and now that I’m back behind the wheel I still keep trips short. This weekend, I faced this ritual within the scope of my new normal and it was pretty terrifying. Before I got in the car I started coming down with a migraine and faced the questions of dealing with the migraine or taking my medication which makes me feel even worse. An hour into the drive I had to pull over and was unsure if I could go on and more unsure if it was truly dangerous to keep driving or if the fear of becoming sick was the thing holding me back.

I called my partner and he said exactly what I needed to hear in that moment. “As long as you feel it is safe for you to keep going, you should give it just a few more exits before you turn around. If you don’t try, it wouldn’t be fair to you or to your family. You can still do the things you want to do, you just have to do it different. Even if you have to stop a bunch along the way, you need to give it a shot.” In all the battles I’ve had with myself over fairness, challenging myself to do more and not shy away hasn’t ever been a factor. My gut reaction is to do what’s fair to me by shutting down, crawling into bed, resting and wallowing. This has felt so necessary in the last few months – particularly when I’m battling medication induced depression (which can fuck right off!) His words pointed out that I owed it not only to my family, to my employers, and to him to keep going in all aspects of my daily life, I also owed it to myself. I’m hoping this is a turning point in my relationship with my body, where we can start co-existing but where I can start holding the reigns a little more often. I made it home, spent Father’s Day with my family and was able to have a great time, even if I needed a sleep-like-the-dead nap halfway through the day. In the end, compromise is not only worth it – it’s as much a part of self-care as anything else.

Image Credit: Ryan Kapp, Outside In, oil on canvas, 18 x 24 inches, 2004.

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