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5 Gentle Reminders for a New Year With Chronic Illness

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Reflection after a transition has become a ritual for me, particularly at the start of a new year. This celestially embedded moment of pause with its predictably measured 365-day-sized container feels friendly and familiar. This year though, this soul-meditation that’s often felt like a comfy, cozy, oversized-sweater has already been filled with grief.

Last new year, I was reflecting on an especially great year. I’d made progress in therapy, moved out of unhealthy relationships into soul-giving ones, experienced an abnormally low count of health flares and was actually a little excited for the upcoming year. Putting myself back in that moment of anticipation as the starting point for what is now a surprisingly sullen end of the year was when it hit me: 2022 was exceptionally hard and that felt like a failure.

On paper, I accomplished a lot last year. I bought my first home, started a new role at work and traveled for the first time since the pandemic began. But beneath the seemingly textbook goal-crossing was one of the worst health years I’ve had in nearly a decade. In my day-to-day life, my current alphabet soup of chronic illnesses includes POTS, endometriosis, chronic daily migraine, IBS, C-PTSD and a new diagnosis we’ll get to in a minute. When the first few months of last year were spent with increased abdominal pain, I didn’t think much of it. That is until an ultrasound confirmed that I had gallstones. Cue surgery to remove my gallbladder followed by two post-surgical blood clots, my newest factor five diagnosis, a post-surgical abdominal tear, five ER visits and a multitude of new specialists, medications, and bills to pay. Delightful.

Transitioning out of a year that left me feeling ready to take on the world into a year in which much of my agency was taken away felt devastating. Sure, I’d crossed some things off my life-goal list but deep down, my soul was exhausted. The more I’ve thought about it, though, the more I’ve been able to see last year for what it really was: pretty dang impressive. Getting to that realization took a bit of reframing. Rather than looking back at the things I set out to accomplish at the beginning of the year and in fact did not, instead I’m reminding myself of a few key takeaways.

1. Your body is different, and it’s OK to name that.

While I love reflection post-transition, I often get frustrated with conventional reflection and goal-setting wisdom. My angsty and sarcastic brain usually looks at that wisdom and says: “gee, must be nice to set goals without worrying about random bodily malfunctions.”

That inner voice and comparison against an able-bodied norm, I realized, were one of the key reasons it was so hard for me to reflect on the last year. I don’t know what it is about me (probably some internalized ableism, but that’s a different conversation for a different day), but I struggle naming that my body is different. When I bought my condo, for example, I posted a cute, happy-go-lucky picture with my realtor on Instagram when I finally closed. I didn’t, however, post that I went to the condo showing eight days post-op with an ice pack Velcroed to my stomach or that I did my move myself while on blood thinners so I could save money to pay off my surgery bills.

Naming that my body is different has helped me see this past year in a new light. While I don’t believe in puppeteering people with disabilities as inspiration, I do find it empowering to name that I managed to do not only big things last year but normal, average, everyday things people often take for granted while also navigating an especially hard year in chronic illness land.

2. There’s power in quantifying. 

In addition to my “gee must be nice to do the things illness-free” angst, I also get frustrated when I talk to people about the goals they’ve accomplished. This is in part because, for me, it’s a big accomplishment just to get through the day.

Earlier last year I was dealing with a stressful project at work (stay with me, I promise it connects). At one point I asked myself: “Why does this feel so hard?” Then I took some time to answer that question. In the process, I realized there’s power in putting my work into numbers that I and those around me understand. So, I did the same for my chronic illness.

What did I find? I’ve done a lot in the last year. Are my accomplishments trendy and relatable? No. But I don’t care. It feels really good to both understand why last year felt so hard and see plainly all that I’ve accomplished.

Here are a few of my 2022 numerically quantified accomplishments. Last year I:

  • Spent 4,350 minutes at appointments. That’s 72.5 hours or 3.02 days.
  • Drove 972 miles to and from appointments.
  • Paid off over $9,000 in medical bills (while working 3 jobs to do it).
  • Had four ultrasounds, two CT scans and one x-ray, was pricked by 15 needles and took one ambulance ride.

3. It’s OK to both set goals and be gentle with yourself along the way.

The way we measure success varies. For me, I’m somewhere between 1) success is when you accomplish your specified goal and 2) there’s success in the journey to your goal even if you don’t reach your destination. What’s hard for me, though, is the way my chronic illnesses result in frequent, unscheduled and nearly always unwanted disruptions. Sure, there’s success in the journey, but when you regularly reduce, rethink, or reframe your goals to find success, it can feel defeating.

I think that’s part of why I started grieving when I looked back to the beginning of the year. For the first time in as long as I could remember, I thought maybe, just maybe, the only monsters I’d have to fight last year would be the regular, daily, life-sized ones instead of slaying chronic illness-sized dragons all the time. Sadly, I didn’t get so lucky. Now as I reflect on the last year, I’m realizing my mind, body and soul are exhausted from slaying 4,350 minutes, $9,000 dollars (or how however you want to quantify it) worth of dragons.

As I think about the future, I’m still excited about what could be. Regardless of whether I find the “yes I did the thing exactly as I said I would” success or the reframed “this is what I learned from slaying 17 dragons” success, I do believe in the process of dreaming about what could be. What I will also be doing going into 2023 is giving myself more grace. We Spoonies deal with so much. The strength we possess to continuously be flexible and adaptable as our day, month or year can be completely rerouted in seconds is incredible. I hope for myself, and maybe for you too, that the next year will be filled with more space to ebb and flow with the changing circumstances a chronically ill body brings. I also hope that the next year will be filled with a more inclusive world that sees, celebrates and fights with us in the invisible battles we Spoonies face.

4. You’re a badass. Full stop. 

Full transparency: this is the hardest one for me. As I look at my quantified success list in #2, part of me believes I’m one freaking tough cookie. There’s also a part of me that wants to curl up in a ball wrapped in the full weight of the overwhelm.

Last year felt like one punch after another. As soon as I’d make it through one thing, I’d get walloped square in the face with another. Even starting a new role at work, one I’d hoped to move into for a while, felt tainted. The first several months in the role were spent quietly navigating the pain, exhaustion, dizziness and unknown of a new, one-organ-down body. I can’t tell you how many meetings I spent pushing through pain while being acutely aware that no one on the call had any idea what I was dealing with.

The constant pummeling of pain and exhaustion makes it difficult for me to embrace the notion that this body is even remotely badass. My body is familiar with fear, frailty, and fatigue, not strength, speed and stamina. Me, a tough hard-hitting showstopper? In this body? Sorry, you’re looking for someone else.

What I’ve realized, however, is that I fight harder and against more foes than I give myself credit for. I firmly believe that we Spoonies are some of the toughest, most resilient people out there. Now, I know sometimes I wish I didn’t have to be strong, but when I let myself feel how much I’ve had to fight, especially in the last year, I tap into a deep well of strength, fire, and badass-ery. This year I want to spend more time tapping into that place and exploring the possibly that maybe, just maybe, I am a badass.

5. You made it through another year, and that alone is enough.

When I say this, there’s a temptation to think I mean it in a greeting card, participation award kind of way. Sure, I do think participation awards are often earned, not given, when you have a chronic illness, but I also mean this in the literal, “holy cow you’re still alive — that’s amazing” way.

Something I rarely talk about is how scary it is to deal with health issues. When I first started feeling pain in my arm after my surgery, I didn’t want to go to the ER. This was in part because ERs are the worst, but also because I didn’t know if anyone would believe me enough to look into the pain I was feeling. Multiple doctors and nurses said they didn’t think an ultrasound on my arm was warranted, but they’d do it if I wanted one. Turns out I had not only one but two clots in my arm as well as an undiagnosed clotting disorder. Apparently being on birth control, having surgery at altitude (hi mountain west friends!) and having an undiagnosed clotting disorder made for a terrible clot-likely cocktail. Pretty scary. Not to mention the post-surgery pain that was a post-surgical tear, the post-post-surgery pain that was an intestinal blockage so large it was verging on rupturing and the “wait is this a death pain or a nothing pain” conundrum of my usual non-surgical health woes.

When I think about all my body’s gone through in the last year, I get pretty emotional. Thank goodness I have a great therapist who’s helped me both find joy in the things that went well and held space for the pain and fear of all that could’ve gone wrong. In whatever you’ve gone through last year, I hope you know how proud I am of you. I also hope you give your mind and body space to acknowledge that you’re here, you’re in this body, and you did it. You made it to the end of the year — or to the end of whatever transitional season you’re in — and that is worth celebrating.

While it may not seem like a success story for some, I’m really happy I’m still here and that I made it through another year. I may not know what’s coming in the next year or the next transition, but for now, I’ll pause, take a slow, deep breath and let myself revel in a well-deserved win.

Getty image by Oleg Breslavtsev

Originally published: January 10, 2023
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