Throughout college, I worked in a research lab studying coping strategies of women who are HIV+, and one thing that we looked for in each participant was ‘mindfulness.’ To be mindful is just what you might think: being conscious of what’s going on, what you need, and what others need around you. Mindfulness is being in the moment, although not so much being spontaneous as being considerate to yourself and to others. If you ask me, mindfulness is one of the hardest skills to train yourself on and put into action.

Don’t get me wrong – it sounds super easy. For example, right now I could be mindful in saying that it is the morning as I write this and my abdomen is very painful – and voila, mindfulness!…but there’s a catch - there’s always a catch! Anyone can be mindful in the short-sighted sense of naming their feelings, but truly mindful individuals are able to act on those feelings.

And this is where I falter, falling and skinning my knees. I find it nearly impossible to act mindfully and give myself a break, especially when I’m in a flare. Am I sick? Very. Am I exhausted? Absolutely. But can I go easy on myself and be kind to my body? Absolutely not.

Maybe it stems from the unspoken but glamorized golden rule of working hard, pushing your limits, and succeeding (or maybe I’ve just seen too many made for TV movies) – somewhere deep inside of me I suppose I’m convinced that if I keep going, wear myself out a little more, that suddenly something will happen. I’m endlessly surprised by others who can so genuinely offer advice like ‘stay home’ or ‘rest up’ or ‘don’t worry’; part of me thinks, “Are they serious??”, while the other part of me is trying to decode the message to see if they really mean, “Get your butt into gear and work harder!” But let me share some wisdom that I learned (and continue to learn) the hard way – it really means to stay home and rest up and don’t worry.

As someone who is chronically ill, I feel guilty taking the advice; I rationalize that it would be easier if I had a quick illness with an end in sight, but the ongoing train tracks of a chronic illness distracts me from caring for myself now because I refuse to compromise my future. But then again, if I don’t take care of myself now – wholly and deeply – I’m the very person compromising my future, not anyone else. And for anyone reading this who knows me, you’ll know I’m the queen of preaching kindness to yourself while simultaneously having a very difficult time doing it for myself.  Being aware of the problem is the first step – right?

By and large, we are good at being kind towards others. We hold open doors, say please and thank you, and are quiet in the early morning when others are still sleeping. But everyone involved in chronic illness – patients, families, doctors, nurses, and so on – can have a difficult time striking the kindness balance. In theory there should be a great deal of kindness to support and respect for the pediatric patient, balanced with a carefully measured amount of encouragement to urge them to pursue their goals.

Let me dispel some myths that I have fervently carried, and still carry, about being kind to yourself: that being kind makes you lame, that it means you’re not working hard enough, or that people expect more of you. There is a very notable difference between having high expectations and valuing working hard with having unrealistic expectations and pushing yourself to your breaking point. You can still accomplish everything you want, but if you’re kind to yourself, you’ll enjoy that success a lot more because you’ll be well enough to do so.

Let’s pledge together to be kind over being unresponsive (for your patient, your child, or yourself), to work together so we can achieve together, and to not only be mindful but to act mindful.



Editor's Note: This post was originally written in support of the Healthier Together Campaign, and was updated in September 2018 to remove specific calls-to-action related to Healthier Together as the campaign is no longer active. The campaign my be over, but you can still revisit the stories of Healthier Together here >>

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