I write this story as I sit inside my house with the thermostat set at 70 degrees as the heatwave of 99 degrees rages outside. I usually work as a nurse practitioner Monday through Friday, but if I even stand in the doorway too long with this heat, my dysautonomia rears its terrible head and causes me to feel faint, dizzy and confused. As if this wasn’t enough, I can expect issues with joint pain, chest pain, palpitations and GI complaints to ensue within the coming hours thanks to my faulty autonomic nervous system.
I write this not to explain what dysautonomia is. I’m sure many of you know what it is and what it means to each of us that are affected by it. It sucks. I write this because lately I’ve been struggling with struggling. You see, I’ve been constantly listening to this negative self-talk in my brain that seems to want to make me feel guilty for my illness – as if I did anything to cause it.
Sure, I can peruse the positive memes and motivational chronic illness banners all over Pinterest, but what do I do when I still feel guilty, depressed, hopeless and angry afterwards? What do I do when the thoughts of dealing with another 30-40 years of this let alone another five minutes are utterly terrifying?
According to Psychology Today, struggling with emotions only leads to more struggling. A perfect analogy to explain this concept is as follows: If I am walking down the road in 99 degree weather with a bucket of water on my head, I’m already suffering – especially if I’m struggling with a chronic illness on top of it. If I suddenly become stressed out about that chronic illness and start giving in to the negative self-talk that predictably ensues, it’s almost as if someone added additional water to the bucket on my head. Now I’m really in trouble. Feeling guilty about feeling sad, down, depressed or hopeless only worsens my load and eventually I won’t be able to carry the bucket. But I cannot necessarily just change the way I feel. So what can I do?
I can practice something called self-compassion. Self-compassion means I treat myself the way I would treat any other person in my shoes. As a healthcare provider, I know how I would treat a patient with dysautonomia – with compassion and empathy. I need to treat myself this way too. I’m trying to employ mindfulness when these negative emotions arise. I acknowledge these emotions, accept them and try to let them go. I’m still not doing great at this, but it’s a work in progress.
If you take anything from this story, I want you to know it’s OK to feel sad, angry and hopeless. We will all have days when we feel this way about our chronic illnesses. On these days, show yourself some self-compassion. Can’t go out in the heat? No problem. Stay inside, read a good book, watch a good movie, maybe even order in your favorite food. Reach out to your friends. Post in your support groups. Post to The Mighty. Use these tough days to take care of yourself and use these tough emotions to speak your truth to others. We cannot imagine how powerful we truly are – even if we are physically disabled. Your words will inspire others. I believe in me and I believe in you.