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'Did the Surgery Work?' Is a Complicated Question When You're Chronically Ill

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“Did the surgery work?”

I’ve been thinking about this question quite a bit recently. This is likely because friends, colleagues, and family have been asking more frequently, seeing as the one-year anniversary of surgery for my Chiari malformation and hypermobile, arthritic neck was in February. It’s a truly complicated question to answer and one I try to avoid like a potato salad left to marinate in the sun. I still feel myself recovering and rehabilitating in the 18 months following the procedure. Beyond that, my body will be ever-changing in both beneficial and detrimental ways.

I live with generalized pain throughout my body, all of which require numerous and varied treatment plans. Such is the life of a person with Ehlers-Danlos syndrome, hypermobile type (HEDS). That is a related but whole other nesting-doll-esque can of worms in itself, so the sole purpose of this particular surgery was to alleviate at least some of the pain and complications resulting from the Chiari malformation and neck instability. I was overjoyed to find that the three-year Intractable Headache From Hades my wonderful, compassionate neurosurgeon sought to heal with scalpel and titanium improved by leaps and bounds through the following months. Along with some pain relief, the surgery helped many of my nerve issues. The tremor and weakness in my hands and arms are much improved; I am back to playing the piano with nearly the same agility, sensitivity, and athleticism I once possessed. As a bonus, the intermittent, debilitating nerve pain in my face has just about disappeared.

But my balance? It was middling before my surgery and went completely off-kilter immediately after I went under the knife. I will likely need more surgery in the future for that and my assortment of cursed joints. As of late, I’m suffering more tension headaches whose cause we have yet to pinpoint, and the chronic migraines I’ve had for 14 years are still the same, though thankfully helped somewhat by quarterly Botox injections. My new-ish cardiac issues are something I’m still learning to manage. Some days it feels as if we tackle one problem just to find that another has either popped up or stopped responding to the medication regimen. I am a list of contradictions, a vague and difficult case my doctors are still puzzling over. I outline my cornucopia of maladies because I hope to reveal the frustrating nature of chronic illness.

woman in hospital bed after surgery
Nikki after her surgery.

I want everyone to understand that being sick and trying to recover is never a straightforward journey, for those trying to be helpful and those beginning the journey themselves. Chronic illness is more like a long family road trip with lots of restroom stops and detours made for gawking at small-town curiosities along the way without any of the fun.

So, am I better after the surgery? I’m better and worse. Every answer to a question about how a therapeutic treatment went comes with a caveat for many of us with long-term illness or permanent disability. It makes it so saying something like,”It really helped, thanks!” for the sake of simplicity feels like a lie. This is especially true when I’m spotted limping around for a completely different reason later, faced with understandable puzzlement, and asked, “I thought you said the treatment worked?”

Surgery was 100 percent the right decision for me. I am much happier with a life requiring mobility aids and having one less type of pain over how I was living before. More often than not, when I try to answer the “Are you feeling better?” question, I feel as if I’m not allowed to deteriorate or even plateau, that the answer has to be a binary “yes” or “no” because any other answer is, for some reason, uncomfortable.

Let me explain: I realize people inquire out of kindness and genuine concern. Still, I grow uneasy under the weight medical hopes and expectations many have as most people, thankfully, have never experienced serious illness. They are able to maintain complete faith in their doctor’s knowledge base and ability to heal with one magic bullet. The question gives me a strange feeling of responsibility. It’s an odd dance, this social navigation, from deciding what qualifies as TMI to figuring out how to turn today’s hardship into an efficient soundbite. I feel like I need to manage expectations. It’s a worry of disappointing people with my messy, complicated body when they are just trying to show support. Nevertheless, the truth of my illness is that it is multi-faceted, dynamic and not very predictable, and requires ongoing multi-faceted, dynamic and unexpected or surprising methods of care that can leave me feeling the better, the same, much worse, but never fixed or “cured.”

In an effort to explain the ongoing complications I and many members of the chronic illness population experience, I can only offer this: Think of our bodies like your old, hand-me-down, beloved car, the one most of us have going into an adult or financially independent life. You’re tight on cash and just starting your career or a graduate education five states away from family. You ride around in your aging car, forever aware of the accumulating mileage and its fragile machinery. One thing breaks down, you get it fixed, sending a prayer to the car gods that the other weird sound you keep hearing is nothing because you can’t afford it — at least not until the paycheck that comes after the one you use to pay rent, but boy would it be nice to have actual savings for once.

Eventually, too soon, something does break and you’re forced to empty your bank account (which is synonymous to the infinitesimally tiny store of energy the chronically ill maintain). You feel like you’re in this perpetual game of catch-up between your bank account and car, but you keep fixing it because it’s essential and because you love it. That car is me. That car is the mysterious friend that always seems to cancel plans at the last minute. That car is the brother who always needs 20 extra minutes to get ready, no matter how early he starts. That car is the co-worker who always looks pained when you are just trying to be nice by asking her if she feels better today.

I wish I could give the well-meaning souls of the world a foolproof solution for how to act, what to ask, and what to avoid. You want to show you care, and chronically ill people want to know they’re cared about. Unfortunately, asking and answering inevitably becomes a delicate tango of half-truths followed by empty lines meant to soothe both parties. Generalizing the question or asking something broad, as opposed directing the query toward a specific treatment plan/procedure mixed with good timing may help, as well as accepting an answer to the tune of “Better… I think” or “Ehhh,” without further probing. It’s not much, but it’s a start and may save awkwardness for the both of you. Let the sick friend lead the conversation and accept what they have to say without pressing for more answers.

Beyond that, taking cues to change the subject, telling a random but humorous tale to divert and lighten the exchange, and gentle, quiet support are always appreciated. Know that we mean well just as you do, even if our answers may seem evasive or rude. Hopefully, this will be beginning of an easier, more truthful dialogue.

The Mighty is asking the following: What’s one phrase you wish people would stop saying about your (or a loved one’s) disability, disease or mental illness? Why? What should they say instead? Check out our Submit a Story page for more about our submission guidelines.

Originally published: June 6, 2016
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