For the past seven years or so, my life has been heavily informed by an array of medical conditions--in particular, Ehlers-Danlos Syndrome (hypermobility type) and Postural Orthostatic Tachycardia Syndrome. I’ll spare you the Google-able details, but basically I struggle a lot with chronic fatigue, dizziness, and a general sense of my body being out-of-whack. It tends to interfere with my day-to-day life, causing me a lot of grief in the process. But living with chronic illness has forced me to be very aware of my physical and mental state, and a benefit of that awareness is having a greater understanding of what it means to take care of oneself.
Whether or not you struggle with chronic illness, disability, or mental illness, it’s important to keep in mind that wellness is maintained through mindfulness, and that looking out for your needs isn’t weakness. Here are a few of the things I’ve learned in both my academic and professional life.
Recovery does not equal relaxation.
Everyone’s been sick at one point or another, and most of us have had to take off a day or two at a time in order to recuperate. But taking a day off for one’s health isn’t nearly the same thing as a vacation, as anyone who’s had to nurse a stomach bug can tell you. The body has to do work in order to heal, and that work tends to require that we lie dormant for a while and let our immune system do its thing.
The same is basically true for all kinds of illness or injury. Taking time to recover from a bad spell isn’t laziness, and doing so requires conserving energy that you need in order to get well. This also means it’s especially important to be mindful of stress and make time to actually relax, free from the burden of recovery.
Not crashing isn’t the same as being fine.
This is something that I often struggle to keep in mind. There’s a concept called the normalization of deviance, which is described as “the gradual process through which unacceptable practice or standards become treated as acceptable. As the deviant behavior is repeated without catastrophic results, it becomes the social norm for the organization.” Normalization of deviance is often cited as the reason for the Space Shuttle Challenger disaster. Basically, NASA scientists kept pushing the Challenger just slightly beyond its set limits in the hopes of improving efficiency, believing there to be no problem since nothing apparently went wrong when its systems were pushed to 110%. But that repeated pushing and ignoring the shuttle’s limitations is exactly what caused the tragedy that occurred at its launch, when those systems were put under more pressure than ever.
It’s important to listen to your body and mind for what they’re trying to tell you. Small problems may not seem like a big deal at the time, but refusing to acknowledge them or allowing them to become part of your new “normal” can lead to disaster. Don’t wait for your Challenger moment to stop and address the problem, or even seek help. You don’t need to have a total breakdown in order to justify taking it easy.
No one knows how you feel better than you do.
For me, one of the biggest struggles of chronic illness is constantly questioning my own perception of how I’m feeling. My sense of “normalcy” has been altered by years of symptoms that never seem to fully go away, which means I’m operating at a lower baseline than most people. (Which, if I may be so bold, is actually pretty awesome of me.) But the thing about having an invisible illness is that it’s just that: invisible. Which means I sometimes come across (usually) well-meaning but ignorant people who cast doubt on how my illness actually affects me. Sometimes they offer unsolicited advice, or else just downplay my experience as an overreaction to minor afflictions.
This, as I’m sure you might have guessed, sucks. A lot. And it especially sucks because I’m not immune to falling into the trap of self-doubt, as I’m sure many of us do. But it’s important to keep in mind that no one else knows what it’s like in your mind or body, and that it’s okay to assert yourself as the sole expert on what exactly you’re feeling. Don’t allow misguided outside perspectives to dictate how you manage your own well-being.
You are not alone.
Your friends, family, and loved ones are your most valuable resource in overcoming adversity. You’re not a burden for relying on your support system, because that’s exactly what support systems are for. Ask for help when you need it, even--especially--if you need it often. Sometimes self-care is recognizing when you need someone else to care for you.
Written by: Sarah Beard