What I Need and What I Don’t

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Chronic illness is quite the teacher. I’ve been surprised by the things I’ve missed on my bad days. The little things in life have become increasingly important to me. I’ve missed things that I wouldn’t have expected, like the sunshine on my face, being in the woods, and walking without caution. I appreciate independence in an entirely new way because I know what it’s like to depend on others for almost everything.

There were a few different local marathons this weekend, and I saw pictures online of smiling friends crossing the finish line. And I smiled too, because I saw happiness in their eyes. This afternoon, when I walked through the living room with a lid-free cup of coffee in my hands (and didn’t spill it), I felt proud of myself. I suspect that how I felt in that moment was similar to how the runners felt when the race was done and they got their medals. Living with chronic illness requires determination and perseverance, just like finishing a long race. Progress comes slowly and it requires hard work. But unlike running a marathon, being ill is not a choice. I can’t throw up my hands and give up. I can’t take a break or schedule a day off.  I am not going after a medal or fulfilling a goal; I am fighting for my health.

There are plenty of things I need to manage my illness. I need kindness from strangers. I need thoughtful words from loved ones. I need rides to appointments. I need grace and understanding. This whole ordeal is difficult, and I don’t do well when I try to handle it alone. There are also things that I do not need. I do not need judgement. I do not need to hear the newest tip or trick on increasing my energy.  I do not need feigned concern or promises that you cannot keep.

Please do not hear my words in an angry tone. I am not writing from an angry place; I am sharing the truth with you, and I am accepting that certain things are hurtful. It’s hurtful when someone implies that I am not ill. I have POTS and my symptoms are real. It is heart-wrenching to be told otherwise. It feel hurt when I am told I could feel better if I would follow a particular “quick fix.” I have tried a number of methods for treating my symptoms, and I need my loved ones to trust that I am managing treatment the best I can.  I also have a team of doctors overseeing my progress. Unfortunately, POTS doesn’t have a cure. If you want to show me that you care about my health, please take the time to learn about my condition or ask me about my illness. Finally, be clear about your willingness to help me. If you are not interested or able to help, please find the courage to be honest with me. Please  do not tell me you’ll be there for me if that’s untrue, because that is hurtful and mean. I appreciate people who are polite, but I put more value on honesty.

I have learned many things in the process of being ill, and I am grateful for the people who have supported me as I learned the hard things. I am grateful for the days when I can sit in the sunshine or enjoy a sense of normalcy. I am grateful for a husband who holds my hand as I figure out what it looks like for me to live an abundant life with an illness. It is empowering to take the time to think about what I do and do not need as I try to build a good life for myself. I encourage you to do the same.

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3 thoughts on “What I Need and What I Don’t

  1. Great and so honest and real.
    I couldn’t stand when the first thing someone told me about my illness was that it’s because of my diet. She told me i could have prevented it if I had grown up eating healthier (just blamed my parents?) and if I changed everything about my diet and to never take meds. I was so hurt and I just wanted to hang up the phone…I mean really, I was JUST diagnosed and you’re king to tell me I did this to myself? Ouch.
    Like in your post– people need to research more instead of judging based off of hear say or popular belief.

    I hope your week goes smoothly and that you walk again with your coffee in hand ! ☺️ must have felt great.
    Sweet blessings to you and hang in there lovely lady!

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