I feel like most of what I write is critical or negative. I want to take space to acknowledge the positive when I can. That’s important. That’s probably called, or may resemble something like, balance.
So, today was a good day!
A few weeks ago, I wrote about “owning this” and talked, generally, about how I’ve been experiencing some tough stuff and what that feels like. Those challenges are still incredibly real. They’re pervasive and unbelievably difficult. They’re even a bit dangerous in the ways they present themselves. [It’s a huge accomplishment for me to recognize and state this – just saying] Since then though, I’ve had some amazing conversations with friends and mentors. I realized the utility of a support system in a different and more meaningful way than I have in the past. I appreciated my friends who created a space where I could articulate how truly miserable, scared, and uncertain I’ve been feeling. I privileged honesty and speaking my struggle in spaces where I felt safe.
I really hit a low point (I’m sill very much there) where I felt out of control. It’s like you know rationally that the behaviors you’re exhibiting aren’t healthy but you can justify them, contort them, and separate them from “you” right up until the moment when you can’t anymore and then the reality, gravity, and urgency of the situation feels so heavy, so crushing, it’s unbearable to attend to or face. I didn’t have the words to argue when my friends suggested I needed some support. It also wasn’t a time that I was asking for support. [you know you have amazing friends when you don’t need to ask] I’m pretty sure that when you get to such a defeated place, the arguments against seeking some help don’t hold water anyway. At the same time, though, I didn’t want to face it. I felt like if I did nothing in response to their concern that it wouldn’t be real. If I could keep avoiding it then, maybe,”I” wouldn’t need help. Turns out, the effort I spent avoiding all of this was, perhaps, more cumbersome than facing these struggles head first and bringing them into the light.
This past week, I heard a lot of things I really didn’t want to hear but I also realized the importance of both seeking out and receiving support. Throughout all these conversations two statements have been super influential for me: “I believe/hear you.” [validation] and “What do you need [from me]?” [support]. However, aside from just hearing these words, what’s been essential has been how I’ve responded to these statements. I accepted my friends’ feedback, their care, their warmth, attention, love, and guidance. Previously I didn’t want to respond to their outreach. I didn’t want to acknowledge their concern. What was different this time was that I shared my space, made myself vulnerable, and felt the true reciprocal nature of friendship. Specifically, I learned how necessary it is to allow or welcome [I tried “let” but it seemed too tied up in oppressive language, like laying down and “taking” their help] others’ supports. You don’t have to face this all alone. Asking for help or accepting it represents a different type of strength. It more closely resembles self-awareness and demonstrates that you know how to harness and leverage your resources in a way that lets you present your best self each day.
So, this week I did some evaluating and made some important, necessary decisions (with the help of some amazing friends and a little motivator called accountabili-buddies [in other words, my friends getting on my case – because they care]). The interesting thing is, when the clouds parted and the sun shined through [that’s my interpretation of how it feels the moment you experience relief – when you realize everything is not hopeless and things will in fact be okay, with some work and a whole lot of “next steps”] I acknowledged how seriously deep and detrimental this struggle has been.
Acknowledging and naming this, owning this, has been one of the most difficult and also inspiring and empowering things I’ve done in a long time. So, today was a good day. Today I did something so incredibly scary but also so necessary. I did something specifically for me. And many of the anxieties I had were lifted when I realized it was okay to not be “okay” and that for even an hour I didn’t need to spend all my energies on keeping up appearances. I could be genuine and admit my personal truths. Recognizing myself in this moment [even when this version of “me” feels so unrecognizable] had a positive impact I wasn’t prepared for. Embracing support didn’t feel as scary or weak as I expected it to feel. Rather, it felt reassuring. I felt like I could finally breathe today, like I could focus today. Today I felt worthy and (recently) uncharacteristically energized. I felt light and most importantly I felt safe.

all we can expect, is that we are important enough to someone and that our relationships are dynamic enough and salient enough to weather the storm and anything we might encounter.
can you do ALL those things?”
is a huge and REAL aspect of my life. Instead I’d rather hear “I believe you”. Living with an invisible illness means that if you choose to tell people about your condition you constantly have to convince people that you’re struggling. Why is that? Why do I need to prove myself to anyone else? Similar to mental illness, chronic, invisible, physical illnesses are challenging to confront each day. And when you identify with so many other things (yay intersectionality!) in addition to your chronic illness those who judge have a hard time fitting the pieces of your life together. Apparently, if it doesn’t make sense by their logic, it must not be real.
so many people living with chronic illness, we put up a front. Each day we go out into the world attempting to convince others (and ourselves) that we’re “fine” or “normal”. We have to, because we cannot allow our condition to control our lives or confine us. We can achieve and be excellent despite of or in the face of our chronic condition. Each day, we face a demon that wants us to stay down. It’s a demon we have to overcome. But what’s challenging is that even when we give off the appearance of being “fine” we’re struggling. And then, if we’re successful, people assume we are fine. What complicates this is that once they assume you’re fine they have a difficult time hearing that you’re not. And when they do, their disposition toward you turns to pity or astonishment. The truth is, if I were to be honest about how much pain I feel each day it would likely make others uncomfortable. When I do tell people, they’re impressed by me. Don’t be impressed by me. Please. This is just who I am. We all have things that challenge us and shape our identities. This is one of mine. Instead, please accept my story and take this as an opportunity to learn more about the multiple dimensions of me. I live in pain each day and I’m incredibly good at putting up a front. Sometimes this gets me in trouble because I’ve gotten pretty good at ignoring my physical (and sometimes mental) obstacles in order to live a “normal” life and do everything I expect for myself. Sometimes that makes me work harder and push myself more. I can’t allow my pain to rule me. I have to literally triumph over pain and then some each day. The extra bit is to prove to whomever that I am more than my diagnosis and that my accomplishments are above and beyond simply “in spite of my condition”.
so we attribute praise. I’m just me. I’m one ordinary person with this specific challenge and I’m here to say it’s a constant part of my life but it’s not the only part of my life. I’m a Spoonie. In some ways, I need to be constantly aware of my daily obligations so I don’t burn out. Burn out is real. Running out of spoons is why I often “quit” at 9:30 PM these days. But that’s my reality. And, all you get to do is accept that and support me. You don’t get to judge and decide for yourself based on my actions how severely I’m suffering or how real my pain is. You don’t get to decide for me if I’m making this up. You get to listen and validate. And gosh! Validation feels so good! Validation sounds like “I believe you”. It sounds like “what do you need from me”. It presents like genuine understanding.
trol and I’m losing sight of myself over and over again. I get this feeling multiple times a day. And every glimpse of normalcy that I encounter quickly diminishes and is replaced by intense, immobilizing sadness and isolation. I can’t recognize myself anymore and, in moments where I feel like I’ve “found me” I too quickly remind myself that this won’t last long. Usually this feeling lasts just about as long as it takes to take a deep, satisfying breath and realize that for a moment I can breathe again. That realization makes even a glimpse seem like I’m watching someone else’s life from the sidelines. I miss my support networks – those things gave me more than I ever realized at the time. Those things kept me going.
ose long rehearsals and early mornings, it became apparent that now none of that really mattered. The petty things we thought were so important just simply faded away. All that was left was a warm feeling. If it could speak it would say “this is where I belong”.
f all my lamenting, a small part of me is appreciative for the opportunity to miss this so much. Because I know I can always go back home.
ted considering this more earlier this seek when I saw these three images:


‘t have an answer for them. My measure of myself cannot be contingent on the compilation of what others perceive to be my successes. I need to find space to get to know who I am outside of the quantifiable, resume worthy aspects. I didn’t do that this week but, next week is another chance to do something different and in the meantime I’ll appreciate the opportunity to learn from my missteps and to practice better intentionality moving forward.