Guest post by Lisa Dostmann
Between surviving and living
The art of walking through life upright with illness, and not spending most of your time...
...chasing, always pushing toward one more improvement, one more bit of "healthier," and in the process completely forgetting to actually live.
...crawling, because the weight of it all feels like it's crushing you.
Sometimes life seems to consist of just these two extremes, both of them a different flavor of "driven." Both fall into the category of surviving, not living, not really.
The first category at least comes paired with adrenaline and fighting spirit, along with an undercurrent of despair, the sense that in this state you can't really live, only exist at best. Even though this mindset is completely understandable, and proactive, meaning instead of giving in to hopelessness, you "fight" and try to make the most of it, there's a real problem with fighting alone: it tends to create tunnel vision, and more and more things start getting subordinated to the goal.
Please don't misunderstand this part. It's absolutely essential that those of us with chronic illness or chronic pain keep searching for answers about our bodies and keep striving to improve our overall condition. But it becomes a problem when all we're doing is hunting, on the run, in a sense, from our actual physical state. Because our body is still the home of our longings, our thoughts, the very seed of our life, even when we'd sometimes rather trade it in for a different one.
How are you supposed to "make peace" with your body when all you're mentally doing is trying to optimize and fight it? What's left over, after that?
Background noise made of symptoms and pain
I'm certainly no shining example when it comes to self-love, and I often curse my body as a whole, or whichever body part is currently refusing to cooperate. But I keep discovering, again and again, that this endless fight doesn't actually agree with me. It wears me down, on top of the physical suffering that already forms the more or less constant background noise of my life.
Just because we know something doesn't mean we act on it, of course. Most smokers know smoking definitely isn't good for them, and quitting is still nearly impossible. Humans are creatures of habit, and breaking habits takes real work, which, for people who are chronically ill and already stressed, can add even more stress on top. We might even feel worse at first, and the completely valid question can creep in: "Is this actually worth it?"
Acceptance: a path toward coping?
Over the past several years of living with my condition, I've circled back to this question again and again, and I haven't exactly solved it either. What I have had to personally accept is that a certain degree of acceptance toward whatever the current situation is turns out to be genuinely helpful. Only once you learn to (at least partly) accept the situation do you start to notice the small possibilities still available to improve your life, instead of chasing after the big-picture goal of "health." That might be a regular baking soda and magnesium bath, or breathing exercises that help, or...
It's the small rituals that make everyday life a bit easier, and that build you back up again for the bigger events: in-depth workups, appointments at university hospitals, surgeries, hospital stays.
I know how tempting it is to think: I'll get better first, and then life will (finally) start, then things will get better, and so on. Following that logic, it only makes sense to put life on hold, to "save it up" for better times, or to want to focus 100% on getting well right now.
In most cases, though, that approach doesn't really pay off.
Enjoying life, doing things, even when it means more symptoms?
People in the CFS/ME/autoimmune/MCAS community, who often "pay" for any deviation from their routine, frequently find it hard to truly let go and "enjoy life" in the conventional sense. The fear of consequences and repercussions from any activity often leads people to deny themselves a great deal, partly out of caution to avoid triggering a flare, and partly in the hope that once they're healthier, they'll be able to make up for lost time.
The problem with both of these understandable mental strategies is this: we run on a reward system, and we can't deny ourselves everything. That's actually part of why diets so often fail, and why people frequently end up weighing more afterward than before they started.
Wir sind Wesen, die nicht immer nur „das Richtige“ tun, sondern manchmal nur auf den kurzfristigen Gewinn aus sind.
We're beings who don't always do "the right thing," sometimes we're simply chasing the short-term win.
So sometimes it genuinely helps to try making peace with where things currently stand, and to deliberately "go a little overboard" now and then, rather than tensely working toward some future day X when everything will supposedly be better. This kind of acceptance also protects against feelings of despair, the sense that all the restriction "isn't getting you anywhere anyway." It reins in the centrifugal pull, and the risk of emotional lows, that come with living a life too tightly focused on a single goal.
It's a bit like a chain carousel ride: the faster it spins, and the harder you try not to get flung outward, the more it happens anyway. And that's not exactly good news for our actual goal either. Maybe we should try thinking of health less as a fixed destination and more as a path full of detours, where we learn something on every single one, and no, even when we've failed, it wasn't for nothing. (And if you're thinking "easy for her to say," no, it really isn't, and I fail at my own resolutions plenty often too.)
Chronic illness means an ongoing up and down
At a certain point, it becomes almost reckless to assume life will go back to exactly how it was before getting sick. I don't think much of practitioners who promise patients with complex conditions that "everything will be fine again." I often wonder whether they're trying to harness the placebo effect, or whether they genuinely believe patients shouldn't be allowed to have doubts, since doubt might mean the patient isn't "mentally cooperating" enough. (I go into what I think of that particular mindset, backed by psychological research, in a separate blog post.)
Beyond a certain point, or especially with chronic conditions, it's important to be honest with patients that fluctuation over time is simply part of the nature of these conditions. That's frustrating, and certainly not every patient wants to hear it, I definitely didn't want to hear it either, back when I was first told, but it would have spared me a painful collision or two with my own expectations of how things were supposed to go.
These days, I consider a doctor or therapist a genuinely good practitioner when they're upfront about their limits, and honest that they can't see into the future. There's nothing wrong with trying things. But a responsible practitioner should be clear about the experimental nature of a given approach, so the patient isn't left in freefall when it doesn't work out (and a certain percentage of the time, it simply doesn't).
When the frustration of being a permanent patient sets in, it sometimes helps to try stepping into the shoes of practitioners and family members for a moment. Being there for patients, even when it's frustrating and progress feels stalled, isn't easy either. The person on the other side has their own professional standards to live up to, and generally really does want to help. Getting to experience that other side, sitting across from patients myself, has always been eye-opening for me. It's part of why I understand just how frustrating this can feel from the treating side too.
So how do I make peace with where I actually am?
Going forward, I'll be sharing small exercises here that have personally helped me move forward, and, for the more skeptical minds among you, backing up mind-body approaches with the relevant research as I go.
Until then: maybe just try, every now and then, letting your body simply be a body. Let yourself lose a whole day to daydreams, however unrealistic they might be. Or let your goals, plans, and wishes just be a few bullet points on a piece of paper, tucked away in some corner, for now.
I wish you as symptom-free and comfortable a day as possible.