Why Independence Is Precious for Those With Chronic Illness
I have lived with several chronic illnesses for longer than I’ve known the term “chronic illness.” Those frequent fevers, joint pains, headaches, GI issues, fatigue, skin problems, etc. were just quirks – or failings – until they worsened to the point of needing a name.
So, I didn’t know my life would look the way it does today. In middle school, I dreamed about going to boarding school and growing my red hair down my back. My future car would be a Ford truck or Jeep, and I spent hours looking at colleges online. True story; I had a five-year plan.
Flash-forward to 22, and the picture is entirely different than I expected. All that longed for – dare I say common – tangible independence hasn’t materialized.
Apart from a few trial months with roommates, I’ve continued to live with my parents. Through the awesomeness of technology, I’m working towards my undergraduate degree as a distance learner. Those developments are victories, even though the apartment living didn’t last.
Chronic illnesses often forces dependence on family and friends, so any bit of self-determination is important. Sometimes, “outsiders” to the situation assume the dependence is a choice. For someone that has, in the past, felt caged by my illnesses, such an accusation is the worst insult. I know I’m one of the many people who work hard to maintain any remainder of their independence. Even if independence is “just” in the form of daily lifestyle choices, faith or reading choices – that’s still independence.
So guys, I don’t drive and most of my days are spent at home. The computer I’m writing this on is a vital window and tool. Does that make me pathetic? Nope, because in the many days spent at home I’m making choices about my health and education. I choose to do physical therapy when I’m exhausted, write when I’m afraid of judgment and express opinions contrary to those held around me. Loving the amazing family that cares for me is a choice. Respecting and honoring my “quirky” body is a choice. Finding doctors who treat me with dignity is a choice. Allowing my faith to grow and shift is a choice. Pursuing my education in the face of immense challenges is a choice. Engaging in uncomfortable conversations is a choice. Up close, all those independent choices make me anything but pathetic.
It’s not fun to be financially dependent on other people, and I can’t say I’ll ever be able to change that with any certainty. Do I occasionally feel guilty about this aspect of my life, influenced by factors far outside of my control? Yes, and that’s the brutally honest answer. It’s not a good feeling, and it’s part of why I have to reframe my idea of independence.
This is a topic I’ve written about before, and I’ll continue to touch on in going forward. Seeing myself as an “independent person” isn’t crazy, because it’s at the core of who I am. Due to all my chronic conditions, my version of independence just looks rather different from most of my peers. As long as I have a desire for independence and do what I can to maintain bits of it throughout my days, I will be an “independent person.”
Follow this journey on Maria Gracefully.
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Thinkstock photo via berdsigns.