“Not succeeding as I know I could feels an awful lot like failing.” I have struggled for years to comprehend how success and chronic illness can coexist, but texting those words to Hart Saturday night took my breath away. This puzzle has been Since my year-long reprieve from eating-triggered migraine attacks ended last spring, my mind has been churning particularly hard to understand what success means when I’m too sick to live up to my potential.
I’m not writing this for reassurance. I know my work is valuable and my words connect deeply with people. I see humbling comments from readers every day. Still, I want to do more. I have more to give. My body won’t let me give it.
The first day of every American Headache Society conference, I eagerly pore over the schedule and abstracts. I’m so excited to see who is speaking and what I might learn. I know I may not make it to every talk, but love exploring the possibilities. I did that Wednesday night (following the Thai restaurant meltdown), then spent Thursday and Friday laid up. Time ticked by while I thought about the sessions I was missing and the people I wasn’t getting to see.
By Friday night, I was a surly mess. That’s when I wrote the first part of this post. This year has been difficult emotionally; the last few weeks have been especially rough. Missing the conference was not surprising given my health and San Diego’s June gloom. But it hurt nonetheless.
I finally made it to the conference Saturday afternoon. It felt so good to be there and I had a great time catching up with people I know and meeting others I’ve known online, but hadn’t met in person. I visited the exhibits and learned what products are in the pipeline for treating migraine and cluster headache. The eight hours I spent at the conference energized me and negated the difficulties of the previous few days. I left fully aware that I’m not succeeding in the ways I know I can, but was also cognizant of how much I’m doing despite significant physical limitations.
I haven’t given up on realizing my potential. It’s frustrating, but it’s also tremendous motivation. I want to get better because I have so much to do in the world. On difficult days, not achieving as much as I’d like does feel like failure. When I step back from that emotional reaction, though, I can see that every little bit is progress toward my larger goals. Part of me despises having to celebrate my successes despite migraine, but the rest of me knows that my struggles make my accomplishments even more worthy of celebration.
I believe I will reach my goals one day. I have to believe that. Even if I don’t know when it will be.
“Implicit in the experience of being disabled and living with chronic illness is the inference from society that you are broken.” –Karolyn Gehrig, #Hospitalglam
We don’t hear this just from society, but from ourselves. I constantly see people with chronic illness refer to themselves as broken. I used to do so myself until I realized how I was limiting myself with this rigid view. My body doesn’t work like I want it to, nor does it work like the bodies of the healthy people I know. But it works. I can breathe and walk and laugh. A body that can do those things is amazing, no matter what its limitations are.
It’s hard to not hate illness, but that often extends to hating the body where the illness resides. This obscures how truly incredible these bodies are. Their tremendous strength carries us through pain and illness, they allow us to awake to each new day. Our bodies are imperfect, but they also achieve astonishing feats every day. This is cause for celebration, not denigration.
#Hospitalglam, which is dedicated to “taking the shame out of being in treatment one selfie at a time,” and #Hospitalglam Shows Body-Positive Campaigns Work for Chronic Sickness Too have similar messages. As Jon Kabat-Zinn wrote, “As long as you’re breathing, there’s more right with you than there is wrong, no matter how ill or hopeless you may feel.” I scoffed the first time I read those words, but now I can see their abiding truth. When I stopped seeing my body as broken, I could begin to recognize all the amazing things it does. I began to love its beautiful imperfection.
I’m celebrating using the last class on my 20-class yoga pass. It only took 10 months to go to 20 classes! Each card is good for a year and the last one expired before I got to use all the classes on it.
I mention yoga so much that it probably seems like I go to classes all the time. I have all five classes I like most on my calendar and try to go to almost every one. About an hour before class starts, I begin assessing whether or not I’ll be able to make it through the class. The answer is far more often “no” than “yes.” It’s frustrating and sometimes infuriating to not be able to make yet another class, but I love it so much that I keep trying.
Hmm, that pretty much sums up my approach to chronic illness. Can’t do the things I want to do? Keep trying and every once in a while I’ll get to. Had another treatment fail? Keep trying and maybe I’ll find one that helps. Feel like there’s nothing good in a life with chronic illness? Keep trying to appreciate even the smallest things and I’ll notice some of the goodness that surrounds me.
I know few things for certain, but am positive that I feel better than I have in ages because I kept trying when all I wanted to do was quit. I threw myself pity parties (sometimes for months) and took treatment breaks; I yelled a lot about how much it sucks to have chronic illness. But time after time, I picked myself up and tried again.
Giving up is a great way to stay exactly where you are — or to get even sicker. That wasn’t an acceptable choice for me, so I kept trying. It often felt like I was going nowhere, like my symptoms would never improve, that all the work was for nothing. But when my options were keep trying, stay stuck, or feel even worse, there was only one way I was willing to go.
My diet has the same frustrations as chronic illness on a smaller scale. Sometimes it’s good, sometimes it’s terrible. Most of the time, it’s something I really don’t like, but accept that I have to live with it for now. While a diet of 40 foods is wonderful compared to a year or two ago, it’s not enough. I won’t stay here forever. I see no way out of the current restrictions, but there has to be something. Despite not knowing how I can possibly expand my diet (preferably by reducing my reactivity to foods), I keep trying. I can’t not.
“This is not what they signed up for, not at all. . . . Redefinition is a nightmare — we think we’ve arrived, in our nice Pottery Barn boxes, and that this or that is true. Then something happens that totally sucks, and we are in a new box, and it is like changing into clothes that don’t fit, that we hate. Yet the essence remains. Essence is malleable, fluid.” Anne Lamott, A Slow Walk into the Amazing Now
Anne Lamott’s writing has hit me straight in the heart once again, this time in an essay about a friend who has ALS. Usually I’d add my reflections, but this doesn’t need much. Almost everyone reading these words knows that redefinition is a nightmare — a gut-wrenching, life-twisting, heartbreaking nightmare that feels like it will destroy the very essence we hold dear. Amidst that, it’s difficult to see that one’s essence not only remains, but is stretching toward the light and growing ever stronger.
I spent many years lost, not knowing who I was under the onslaught of chronic illness. I mourned for my lost self, sure I’d never see her again. Even though I couldn’t see it, my essence was still there. It was, in fact, what carried me through, changing in the ways necessary to keep me going. In this year that I’ve had remarkable physical improvement, I still haven’t seen the Kerrie I used to be. That’s OK. I like this redefined version so much more.
Having a chronic illness or chronic pain is life-altering and the stigma of invisible illness can be infuriating for anyone, but it can be especially difficult for teenagers. Sometimes the very people who are supposed to support and protect them — teachers, coaches, school nurses, doctors and even parents — don’t even believe them. (Sadly, many of you don’t have to imagine this scenario because you lived it.)
Psychology professor and Psychology Today blogger Nancy Darling, whose teen son has migraine, provides an insightful and touching take on migraine and chronic pain in teenagers.
Withdrawn, Irritable Teen? Is It A Migraine? points out that migraine often doesn’t look like migraine and that the associated absentmindedness, irritability and isolation can look like a normal “teenage funk.” She also explains why migraine looks so much like a kid trying to get out of going to school.
Children Who Go to School in Pain walks readers through a day when her son has a migraine. The most poignant part is “faking being well.” That’s right, despite the common accusation that the chronically ill are faking illness, many of us are actually faking being well. Whether you’re a teenager or adult, I’m betting that resonates with many of you; it certainly does me.
Please take a look at Dr. Darling’s posts. Even if you’re not a parent, the struggles she describes are important for everyone to be aware of. As a former teenager with chronic illness, I’m relieved to read about a topic that gets far too little attention.