A new autoimmune disease is exhausting and foreign, until it becomes exhausting and familiar.
Exhausting is such a good word for it. Sometimes, it’s the disease process itself that is exhausting and causes fatigue physically. Other times, it’s the coping and figuring out how to wrangle your life into a pretzel around it that is exhausting. It’s exhausting continually finding new things that are changing, out of your control, that you have to adapt to both physically and mentally. Sometimes, it’s exhausting trying to explain to others how it affects you and what you need support-wise, especially when it doesn’t come with a clear name, a neat bow, and an easily explainable narrative about what the trajectory will look like. Because you don’t know. You don’t have answers, and it’s exhausting to deal with the unknown and uncertainty.
On the flip side, it’s also exhausting when you don’t talk about it. It’s exhausting to be dealing with it, struggling to adjust, and not talking about it. Because of stigma, because of concern about how other people will treat you differently (even if well-intentioned), because you don’t have answers or a name and can’t fully articulate what is going on in a way other people will understand, because you worry about how it impacts the people you love and whether you’re an anchor holding them back.
Sometimes that also means it’s exhausting to articulate to your healthcare providers. I am lucky that my healthcare providers listened to me and believed me, even when I was coming from a high state of health and physical fitness (e.g. cross country skiing for 6 hours, run/walking ultramarathons, exercising every day, etc) and respect that when I said “I can’t run and press off through my ankle and now it feels weird in my thigh and to lift my hip, and my hands are now weak”, that it was indeed a problem, even when my bloodwork and other biomarkers and clinical exams were mostly normal. (Except for my lungs, the canary in the coalmine for me, and a few sporadic blood biomarkers showing immune shenanigans, most of my data makes me look like the healthiest horse standing outside of the glue factory. I look sick compared to healthy horses, but I look too healthy compared to the horses going into the glue factory. So to speak.)
It’s exhausting to not gaslight myself, coming out of doctor’s appointment after doctor’s appointment where they repeat “you remain a mystery” while also doing everything they can to help to try to diagnose the exhausting, now-familiar thing that evades naming, evades mechanistic understanding, and evades effective curative treatment. They’re doing everything they can despite the fact that they can’t provide answers. Nor can I. I have to hold on to my data (experiential, lived, wearable, and the few lab results and pulmonary function testing that clearly show the level of the problem) tightly and push back against gaslighting myself.
But while it’s all exhausting, it has slowly shifted from foreign to familiar.
I am grateful for the familiarity in a way, because with familiarity comes a newly developed language to put words to the indescribable; a reinforced skill for adaptation and new ‘hacks’ and discovered instruments of freedom; and a commitment to find the glimmers of joy buried under all the exhaustion.
My newly developed language is evolving, because I constantly test this new language on my family and friends in the know. I have to differentiate how this impacts my muscles, especially because I come from a land of ultrarunners who specifically train in discomfort for the purpose of being able to tolerate discomfort in endurance activities. When I say something bothers me, it means it’s intolerable and not what a healthy body would experience in terms of discomfort. I know what tired, sore muscles feel like (hello, 82 miles of run/walking or 6 hours of cross country skiing 50 kilometers/31 miles) and what acute muscle damage feels like from physical activity. This is not that. It’s struggling to initiate a muscle movement, but still being able to move, even though it progressively feels like moving through jello. It’s not something that anyone I know, or I when healthy, experienced, and so I have to figure out and evolve the ways to describe it. Mostly, I found success in describing the consequences of what is happening, when I can’t run and I find it more challenging to walk and hike, even though I can still do those things. Those are things that people can understand, and understand that it’s important to me that I can’t do them and/or that these activities are immensely harder to accomplish, even if they don’t understand the sensation causing that outcome. I can generally describe having an autoimmune disease that affects my muscles, and that’s enough (people understand autoimmune diseases) to be understood.
Like Icarus flying too close to the sun (analogy at top of mind from recently reading to my nephew a Percy Jackson book…), it’s like my muscles are melting, but not to the point of my falling into the ocean. And that’s where healthcare providers most usually see patients, when they’re about to or have hit the ocean when their wings (muscles) fully stop working. I am still flying, but less high, a little melty, a little wonky. I know something is clearly wrong and I see the ocean and where things will go without a solution. But even by flying lower (aka, doing less, stopping running, etc), I’m still melting – it’s still happening, and limiting my physical activity or activities of daily living doesn’t change the trajectory.
Thus, the reinforced skills for adaptations. I learned a lot from my decades of type 1 diabetes and having to “DIY” things myself outside of the healthcare solution. I’m more quick to go from “ugh this is a problem” to wondering about possible solutions. This is everything from changing how I sit (different chairs, with cushions) or lay down to work (with my laptop on a stand to reduce neck muscle strain and a separate bluetooth keyboard and trackpad so I can iterate positions as needed) to bracing early and often (ankle braces, a back brace, a foam neck brace) to a variety of things to lower the challenge to my hands. This includes using little slide tins for meds instead of flip top containers, because even the easy to open containers sometimes bother my hands. I also found a ski carrying strap so I can carry my cross country skis in the winter over my shoulder with the strap, rather than holding them in my hands. Sometimes I ask Scott to make my dinner or prep things (like cutting fruit in advance) so I don’t make my food choices based on not wanting to use up my hand energy to prep the food rather than for eating it. (Ongoing shout out to Scott, who epitomizes the ultimate supportive partner/husband and if he gets annoyed at anything, it’s my occasional hesitation or resistance of wanting him to ask him to do more, because I worry about asking him to do much. He recently spontaneously reminded me that I am a sail…and that always helps.)
It’s important for me to also remember that every bit helps and it doesn’t have to cure but that doesn’t mean it won’t help. Because the help adds up. But it requires pushing back the mental knee-jerk response of saying “that won’t help” because it’s not a cure for the root of the problem. Nope, no cures here. But that doesn’t mean a little bit of help for a little corner of the problem isn’t worth trying. Usually, 2 out of 3 times that little bit of help is a huge relief and reduces the physical burden, even if it’s ‘small’ like something for my hands. Sometimes it’s only a little bit of a help, and so we keep looking for better solutions for that particular challenge. Sometimes I can’t adapt a solution and I adapt my behavior. But my success rate has gone up, and that is great knowing that I can adapt solutions to fit my needs, even though sometimes it gets overwhelming to think about the volume of adaptations, especially when comparing it to a few years ago of how I lived and locomoted and worked.
Because the adaptations mean I can continue to find the glimmers of joy in life. No, I can’t run and I hike and walk more slowly, but I can still get out into the trees and under the blue skies and sunshine and feel the breeze on my face as I move through space. On days I choose to rest, I can sit out on the porch, sometimes braced, sometimes reclined in a chair with pillows, and watch the kittens sun themselves or jump up and stretch out on my legs. I can still spend time with family and friends, enjoying what I can still do with my ten niblings (nieces and nephews) and honorary niblings in my life. I can remind myself that while it feels like I’m falling out of the sky and I am dipping down, I have (hopefully) miles to go before I hit the ocean and stop flying at all. The delta in altitude sucks, especially in comparison to what I could do before, but with less comparison I can find more glimmers of joy both now and on the horizon. There is still a lot I can (and do) do, even as the list of things I can’t do or must adapt grows.
If you find yourself in the exhausting-but-foreign space of a new or suspected autoimmune disease, it sucks. I’m sorry. I wish I could help. (And if I can help you, let me know). But I hope it helps you to know that you are not alone. That yes, it does suck, but there is some solace when it turns from completely foreign to somewhat familiar, even if that doesn’t mean that it got easier or got better. But maybe it’ll be more known, maybe you’ll find more adaptations, and maybe you’ll still be able to find some glimmers of joy.
I did (I have), and I hope you do, too.