Hey Friends! Confession. Last year I avoided going to the doctor's office. I was diagnosed with a chronic illness and over the last two years, it has required a check-in every 3-6 months. I was going so often when I first got diagnosed that a receptionist warned me that insurance might start rejecting me soon. With every visit also came lab work - poke with a needle, pee in the cup. The only question was how many vials would I be giving this time. And I did it. But I hit a wall. I hit a wall last year when I just couldn’t do it again.
I am feeling wild, holy, and free as I get to spend time offering warm accompaniment in a variety of ways: speaking with college classes as a guest presence (not presenter, because I am there to relate, not lecture); meeting on Zoom to provide a container and companionship for folks seeking to repair and strengthen relationships; and proofreading the manuscript of my book called Being Restorative that goes to press next week. Feeling the joy of aliveness and the great grief of the world, knowing that showing up matters and how I show matters, too.
Wild: I am removing this week my final belongings from my ex-husband’s house and feel the last anchor of my former domestic life being removed from the sea floor.
Holy: I am learning, laboring, and struggling to honor myself as a beloved child of God. I have spent my 48 years raising up others, and without that vocational purpose exercised through my work in the church - I must turn to face my holy self.
Free: I gave myself permission to surrender this year and let God show me “what is next”. I’ve been white knuckle focused on surviving in free fall. Now, I’m learning how to float and accept freedom. I don’t belong anywhere.
What an honest, vulnerable share Austin! Really helpful self care points in areas I struggle with as well so a ton of appreciation for that. It’s a victory for you and a blessing to all of us every time you show up as your truest self and don’t allow the culture’s harmful, oppressive narratives keep your from being and sharing your most authentic self. Thank you for that ♥️💯
Living with chronic illness/disability… this one hit home for me. You summed up so much of what I (and many others) feel… it’s not about the actual process of getting lab work done. It’s about the results and for me personally which doctor is giving me the results and explaining them. It feels like a pass fail, but with some doctors it has felt like a slap in the face or “you’re not trying hard enough” and I am so grateful for your vulnerability and honesty with that, it made me feel a little less alone. ♥️
THIS part:”Ultimately, I have to remember that these tests are not a pronouncement of my goodness, my hopefulness, my character or my commitment. They are not a reflection of who I am. They are only a reflection of how my body is doing as it navigates a white-supremacist, capitalist, patriarchy. And as a Black woman, the fact that I am still here at all is a win... is revolutionary. “
Love it❤️ confession with me: I’ve had sciatica for two yrs and a knee pain that won’t quit. Every week I’m pushing thru pain to exercise with a personal trainer. I’m winning!👆🏾with help of Lord and my perspective. I keep having the negative thoughts but ever week I push through and I e lost close to 20 lbs! Yay me! ☺️🌺
I agree wholeheartedly and love that you’re writing about it. I’ve lost both my parents, as well as my husband to various long-term cancers and I have a terrible autoimmune problem and the one thing I’ve learned is that it affects everything. A great doc will be sure to address the mental health implications but not all think to. People need to understand and normalize situational mental health challenges associated with all illness!!!
I’m so sorry you’re living with chronic illness. This was so beautifully written. I’m the mom of a kid with a chronic illness and you articulated so many things about the experience that increase my empathy/understanding. Thank you.
You have summed beautifully living with chronic illness. No quote has summed up my internal struggle with lab tests better: “These test results never feel like a test of how my body is doing. It feels like a test for me. “ Last year, I finally decided to not open MyChart when the results return. It was too much. I have simply taken the old school approach- if my doctor thinks there is an issue, they can let me know. Thank you for giving voice to this struggle.
I love this. As a psychotherapist, I teach this to others all the time. As Epictetus said, "It's not what happens to you but how you react to what happens to you." BUT I am a brain tumor survivor who has to have an annual MRI to see if it is growing back - which it did-which necessitated a second brain surgery (2015). With a lot of other auto immune stuff going on, tests are my norm as well...and the anxiety...and the looking at numbers...all of it. I don't always take my own (or your) advice. Your words about how this seems like a test on how well "I'm" taking care of myself and the following judgement is something I struggle with constantly. My thoughts of "If I die earlier than I hoped and leave my family to grieve my death, it will be because I wasn't enough, I didn't try hard enough, I didn't care enough, etc. I never thought of this that way until you voiced it here Austin. Thank you. Now to change that thought pattern.
My faith practice looks nothing like I expected, anticipated, or could have predicted five years ago. WILD. My children caused me to question the trauma-informed theology I had accepted for myself. The church caused me to question the systems I had devoted myself to. The culture of the last three years especially has helped me see Jesus more clearly. It felt like grief, anger, and loss for the longest. It’s beginning to feel like something new and better, and that feels wild and hopeful.
My 13-year-old has been identifying as trans for the last two years. My 11-year-old bravely told her crush she had feelings for her. My kids are navigating identity and attraction in ways I wasn’t prepared for as a committed, 30-year evangelical Christian, and they are showing up fully in their own lives and sharing with us (husband and me) their journey. HOLY.
I am experiencing new levels of freedom from shame and expectation. New ways to allow myself to experience God and pursue them. FREE.
I was at a retreat last week where the facilitator had us bring a favorite childhood picture and think of words that described that that kid. Then we told a partner about that picture and they added a word. We spent the rest of the retreat thinking if those core things are how we are living now. She called them Essence Words. It was a very powerful exercise, I have my picture and the words hanging above my computer and trying to see what parts of my life don't line up with that now.
Life is so hard. I love how you cared for yourself for a reasonable season by not doing the doctor visits, and I love how you’re picking them up and caring for yourself differently as you do the visits again. The power of pause is great, isn’t it? I’ve found that too, recently. Sorry for the heaviness of ongoing health issues. Aside from that, loved this whole update. Beautiful, sacred, simple, joy, grief, love, life. 💛
Nope, nope, nope! Ignoring problems never results in them going away. Find a kind, persistent case manager who will help you navigate your insurance/appointment/emotional issues and find a way to not let illness define you. Mental health care can help with this!!!
I am feeling wild, holy, and free as I get to spend time offering warm accompaniment in a variety of ways: speaking with college classes as a guest presence (not presenter, because I am there to relate, not lecture); meeting on Zoom to provide a container and companionship for folks seeking to repair and strengthen relationships; and proofreading the manuscript of my book called Being Restorative that goes to press next week. Feeling the joy of aliveness and the great grief of the world, knowing that showing up matters and how I show matters, too.
Wild: I am removing this week my final belongings from my ex-husband’s house and feel the last anchor of my former domestic life being removed from the sea floor.
Holy: I am learning, laboring, and struggling to honor myself as a beloved child of God. I have spent my 48 years raising up others, and without that vocational purpose exercised through my work in the church - I must turn to face my holy self.
Free: I gave myself permission to surrender this year and let God show me “what is next”. I’ve been white knuckle focused on surviving in free fall. Now, I’m learning how to float and accept freedom. I don’t belong anywhere.
What an honest, vulnerable share Austin! Really helpful self care points in areas I struggle with as well so a ton of appreciation for that. It’s a victory for you and a blessing to all of us every time you show up as your truest self and don’t allow the culture’s harmful, oppressive narratives keep your from being and sharing your most authentic self. Thank you for that ♥️💯
Living with chronic illness/disability… this one hit home for me. You summed up so much of what I (and many others) feel… it’s not about the actual process of getting lab work done. It’s about the results and for me personally which doctor is giving me the results and explaining them. It feels like a pass fail, but with some doctors it has felt like a slap in the face or “you’re not trying hard enough” and I am so grateful for your vulnerability and honesty with that, it made me feel a little less alone. ♥️
THIS part:”Ultimately, I have to remember that these tests are not a pronouncement of my goodness, my hopefulness, my character or my commitment. They are not a reflection of who I am. They are only a reflection of how my body is doing as it navigates a white-supremacist, capitalist, patriarchy. And as a Black woman, the fact that I am still here at all is a win... is revolutionary. “
Love it❤️ confession with me: I’ve had sciatica for two yrs and a knee pain that won’t quit. Every week I’m pushing thru pain to exercise with a personal trainer. I’m winning!👆🏾with help of Lord and my perspective. I keep having the negative thoughts but ever week I push through and I e lost close to 20 lbs! Yay me! ☺️🌺
I agree wholeheartedly and love that you’re writing about it. I’ve lost both my parents, as well as my husband to various long-term cancers and I have a terrible autoimmune problem and the one thing I’ve learned is that it affects everything. A great doc will be sure to address the mental health implications but not all think to. People need to understand and normalize situational mental health challenges associated with all illness!!!
I know-it’s scary. But it’s really important to address the very real situational mental health implications that come along with illness and disease
I’m so sorry you’re living with chronic illness. This was so beautifully written. I’m the mom of a kid with a chronic illness and you articulated so many things about the experience that increase my empathy/understanding. Thank you.
Thank you, Austin, for this important post. I'm greatly appreciative of your openness with your readers.
You have summed beautifully living with chronic illness. No quote has summed up my internal struggle with lab tests better: “These test results never feel like a test of how my body is doing. It feels like a test for me. “ Last year, I finally decided to not open MyChart when the results return. It was too much. I have simply taken the old school approach- if my doctor thinks there is an issue, they can let me know. Thank you for giving voice to this struggle.
I love this. As a psychotherapist, I teach this to others all the time. As Epictetus said, "It's not what happens to you but how you react to what happens to you." BUT I am a brain tumor survivor who has to have an annual MRI to see if it is growing back - which it did-which necessitated a second brain surgery (2015). With a lot of other auto immune stuff going on, tests are my norm as well...and the anxiety...and the looking at numbers...all of it. I don't always take my own (or your) advice. Your words about how this seems like a test on how well "I'm" taking care of myself and the following judgement is something I struggle with constantly. My thoughts of "If I die earlier than I hoped and leave my family to grieve my death, it will be because I wasn't enough, I didn't try hard enough, I didn't care enough, etc. I never thought of this that way until you voiced it here Austin. Thank you. Now to change that thought pattern.
My faith practice looks nothing like I expected, anticipated, or could have predicted five years ago. WILD. My children caused me to question the trauma-informed theology I had accepted for myself. The church caused me to question the systems I had devoted myself to. The culture of the last three years especially has helped me see Jesus more clearly. It felt like grief, anger, and loss for the longest. It’s beginning to feel like something new and better, and that feels wild and hopeful.
My 13-year-old has been identifying as trans for the last two years. My 11-year-old bravely told her crush she had feelings for her. My kids are navigating identity and attraction in ways I wasn’t prepared for as a committed, 30-year evangelical Christian, and they are showing up fully in their own lives and sharing with us (husband and me) their journey. HOLY.
I am experiencing new levels of freedom from shame and expectation. New ways to allow myself to experience God and pursue them. FREE.
I was at a retreat last week where the facilitator had us bring a favorite childhood picture and think of words that described that that kid. Then we told a partner about that picture and they added a word. We spent the rest of the retreat thinking if those core things are how we are living now. She called them Essence Words. It was a very powerful exercise, I have my picture and the words hanging above my computer and trying to see what parts of my life don't line up with that now.
I am not at all surprised that you are a poet. It still shows in your writing. I love your shift in perspective re lab results and healthcare.
Life is so hard. I love how you cared for yourself for a reasonable season by not doing the doctor visits, and I love how you’re picking them up and caring for yourself differently as you do the visits again. The power of pause is great, isn’t it? I’ve found that too, recently. Sorry for the heaviness of ongoing health issues. Aside from that, loved this whole update. Beautiful, sacred, simple, joy, grief, love, life. 💛
Nope, nope, nope! Ignoring problems never results in them going away. Find a kind, persistent case manager who will help you navigate your insurance/appointment/emotional issues and find a way to not let illness define you. Mental health care can help with this!!!