5 Moments in My Chronic Illness Journey That Changed Me

5 Moments in My Chronic Illness Journey That Changed Me

November 17, 2016 | Posted in: Chronic Illness and Diagnosis, Chronic Life

We all have moments in our journey that change us, for better or for worse. Maybe these moments grow us or educate us on the ways of the world. Perhaps, they teach us that life is painful or people are not to be trusted. Some moments might teach us there is beauty and living yet to come. Others still, might teach us that we are stronger, wiser than we knew, or the opposite, we need others more than we’d like to admit.

We can collect these moments like my daughter collects treasures on a nature walk. We can see their beauty and their value, pick them up and place them in our pockets and go on with our day. But some of these moments are too large to fit in our pockets. These are the moments that change our lives forever. When we look back over the roadmap of our lives, we see these turns in the road flagged. We say, “Right there! That was the moment when I knew, when I learned, when I realized, when I forgave.”

Today, I share five of these moments from my personal journey with chronic illness. I’d love to hear about some of these moments of your life, your journey with chronic illness as well.

  1. The arrival of the wheelchair: What I did know: Something was very, very wrong. Walking was an arduous, exhausting process which required the assistance of two people and still left one leg dragging behind me. What I did not know: Why is was occurring, how to make it stop, or that it was time for a wheelchair. However, my precious friend Nicole handled this moment with such grace. For days, I’d been dragging one leg behind me and leaning the other half of my body on my husband to get to and from the restroom. At night, I tried to drag my body across the ground on my stomach, as to not have to wake my husband. Nicole made one phone call to her husband in which she asked him to bring over his wheelchair because, “Stacey couldn’t walk.” And then it appeared. I loved her for bringing it because the body dragging was exhausting and painful. I could never adequately express how much I hated traversing public outings in the chair, however. The stares, the questioning, doubtful, penetrating glances, the public restroom obstacle courses, they were all pure misery. And the chair, what did it say about me? About the rest of my life? Its arrival changed me, the way I saw myself, my future, my worth and the seriousness of my ailments.
  2. “Stress and Anxiety”: I was still in a wheelchair, unable to button my own sweater when the first neurologist I saw claimed all of my symptoms were the result of “stress and anxiety.” I was angry, ashamed and powerless. You see, despite my overwhelming desire to flee the room, I couldn’t. I wanted away from this man who was supposed to help me but instead spoke to me with disgust and contempt. My husband calmly proceeded to ask questions. I didn’t want to hear another word from this man’s mouth, but I was powerless to leave on my own. That day, I learn to doubt myself, to be ashamed of myself. I learned that I was a burden, untrustworthy. The doctor talked to my husband without so much as making eye contact with me. I learned that I was less than a dog. It took years to unlearn the things I learned in the span of twenty minutes from a man we paid to help me.
  3. Diagnosis Day: There were four symptom-filled years in between the day I sat in a wheelchair next to my husband while he calmly asked follow-up questions from a man who refused to look at me and the day I sat in front of a kind, wise, sought after expert who finally spoke answers to all of my questions. I hadn’t expected answers that day, but I had hoped for some measure of relief. I was floored when he offered both. I couldn’t keep up with him as he spouted off answer after answer, test results and diagnoses. What I learned that day was that kindness and goodness still existed. That my inner voice which had been shouting so loudly all along was trustworthy after all. I learned even the coldest winters eventually come to an end.
  4. “Anytime day or night”: Once I began my treatment under the care of one of my favorite human beings of all time, I found that not only was my body healing but my heart as well. Each time I went in, he would instruct me to “call him anytime day or night” should my symptoms worsen. After being passed from doctor to doctor with little more than a cursory glance and a mumbled, “Here, try these pills” here I learned my pain, my story mattered. I had underestimated how powerful this was. So I want to pause here for a moment. Maybe today you are experiencing a tremendous amount of pain, perhaps physical or perhaps emotional. Perhaps, the people in your world, or your life experiences have taught you that your pain, your story doesn’t matter. I want to tell you, that’s a lie. You matter. You pain matters. Your story matters. Let this be the place you mark, where your story takes a turn and your relearn how very precious you are.
  5. IVIG Approval: I remember one of the last denial letters I got from the insurance company. It was the day before my husband and I went away overnight for a quick anniversary celebration. I was crushed. Sick and tired of being sick and tired I couldn’t understand how they could have multiple doctors telling them my immune system was incomplete and I needed this treatment and yet repeatedly deny me access to it. My infections were on top of one another, often multiple at a time, with few breaks in between. Did the insurance company not realize what opportunity for an improved quality of life they were taking away from me? Did they not care? The day my doctor had his “peer to peer” review call with a doctor from the insurance company and my treatment was finally approved felt like winning a war. That day, I learned there are still people who will fight on your behalf, and that I was worth fighting for.

 

So what about you? What moments have changed you? What did you learn from them?

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11 Comments

  1. Sarah Clouser
    November 17, 2016

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    Wow. A powerful piece. The wheelchair section really resonated with me. My mother suffered from ALS before she passed away years ago, and I remember each piece of equipment coming into our house and the impact it had. First a cane, then a walker, then the wheelchair … Looking back now, I imagine her thoughts were similar to yours – a mixture of relief and fear.

    • Stacey Philpot
      November 18, 2016

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      Oh, Sarah– I am so, so sorry to hear about the loss of your Mom and her pain. Those assistive devices, they bring such relief and yet, come with their own grieving. Each device, and each person may bring a different response.

  2. Sheila Schweiger-Rhodes
    November 17, 2016

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    Stacey, Thank You for your authentic post. I’m not going to lie, I teared up because it breaks my heart every time I hear about a person who is being treated less than by a professional, especially a Dr. who took an oath. I’m so happy you have found a Dr. who listens and supports you.

    My mom had breast cancer and my grandmother, great-grandmother and an Aunt has passed away from breast cancer. When my mom went to the Dr. she asked to have them both removed so she wouldn’t have to go through surgery again. She was denied and they deemed it unnecessary for both despite her history. She had one breast removed and three years to the day had the other one removed due to cancer again.

    Just because a Dr. thinks they know everything, doesn’t mean they know everything. I’ve added you to my prayer journal and asking God to give you strength, peace and wellness.

    • Stacey Philpot
      November 18, 2016

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      Sheila,
      I adore you. Thank you for your kind words and for your prayers. I think prior to this season of my life I held physicians on pedestal. I assumed they were magically all-knowing. One thing I have learned for sure through this experience, they are just people. Some good, some bad. Some know more than others and some simply don’t care to know. Finding the right set of eyes makes all the difference.

  3. Sabrina
    November 17, 2016

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    #2 makes me so angry for you, angry that there are doctors who act like that BUT your ability to look at these things as lessons and find value in them is truly inspiring!

    • Stacey Philpot
      November 18, 2016

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      Forgiving that doctor wasn’t easy. I had to make a choice. I had someone drive me to his office that Christmas so I could drop off cookies and a card… and release all the yuck in my heart. 🙂

  4. Melanie
    November 17, 2016

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    Christie, I love that through all of this you kept your faith and determination. If there is one thing that remains true, there is always hope and the Lord is never done with us. I live with multiple chronic illnesses and I so admire your will to share your story!

  5. kellynickerson
    November 17, 2016

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    Your transparency is a such a gift. While our diagnoses are not the same, I could relate to #2. I remember dropping from 150 pounds to 90 and begging the GI doctor to help me. He looked at me and said when I get my upstairs (He pointed to my head.) fixed, then everything would get better. He ended up discharging me as a patient because they didn’t know what to do with me.

    Later, we got testing back that proved I was sick and my husband had me call them and prove I wasn’t crazy.

    As I descended into sickness, one of the biggest days when my other doctor lowered his head and said, “There is nothing more we can do. Go home and plan your funeral and make the best of the time you have left.” Planning my funeral was surreal.

    One of the biggest memories was when we had to move in with In-laws because I could no longer take care of the kids. I was down to 80 pounds and my husband had to lift me into the tub and bathe me. I realized my time was nearing an end and sobbed in his arms. It was at that moment I realized how short life was and how much I truly loved my family.

    Being sick has been devastating, yet it has brought me to a place of humility, compassion, and gratitude that I could never have learned. However, I have found it has bonded me instantly with others who know this hard fight. I am so thankful for my fellow warriors who remind me how blessed I really am. <3

    I love you, Stacey, you are one of those people. Fight on, Warrior Princess!!

    • Stacey Philpot
      November 18, 2016

      Leave a Reply

      Oh Kelly, I don’t know how your husband didn’t punch that man. How do they stay so calm during these moments? I thought about faxing test results to that doctor later on. But I knew he’d just disregard them. Anyone but him would be wrong. Heck, if I’d dropped dead of a heart attack in front of him he’d of said I did it to myself. 🙂

      And having to move into the in laws because you can’t take care of the kids. oh goodness. My heart aches for you. Avery has asked me for a new mom before, one that wasn’t sick. How I have wished I could give her one.

      And yes,yes, yes, to compassion and humility. I find that now when I get in a room full of people who find themselves superior to the rest of the world, who talk down to and about others, it’s like a bad taste I can’t out of my mouth, I can’t flee fast enough. All I can see are the unseen battles people may be fighting and my urge to protect and defend kicks in. Are we helping or hurting? I always want to be on the side of helping.

  6. kellynickerson
    November 17, 2016

    Leave a Reply

    Your transparency is a such a gift. While our diagnoses are not the same, I could relate to #2. I remember dropping from 150 pounds to 90 and begging the GI doctor to help me. He looked at me and said when I get my upstairs (He pointed to my head.) fixed, then everything would get better. He ended up discharging me as a patient because they didn’t know what to do with me.

    Later, we got testing back that proved I was sick and my husband had me call them and prove I wasn’t crazy.

    As I descended into sickness, one of the biggest days when my other doctor lowered his head and said, “There is nothing more we can do. Go home and plan your funeral and make the best of the time you have left.” Planning my funeral was surreal.

    One of the biggest memories was when we had to move in with In-laws because I could no longer take care of the kids. I was down to 80 pounds and my husband had to lift me into the tub and bathe me. I realized my time was nearing an end and sobbed in his arms. It was at that moment I realized how short life was and how much I truly loved my family.

    Being sick has been devastating, yet it has brought me to a place of humility, compassion, and gratitude that I could never have learned. However, I have found it has bonded me instantly with others who know this hard fight. I am so thankful for my fellow warriors who remind me how blessed I really am. <3

    I love you, Stacey, you are one of those people. Fight on, Warrior Princess!!

  7. Kelly Russell
    November 17, 2016

    Leave a Reply

    Thank you for sharing this. I like how it’s a mixture of good and bad, painful and hopeful. Those are indeed the events that shape us. Beautiful writing and reflection.

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