photo: Kate Inglis

For a long time now, I have lived with a chronic illness. An auto-immune condition. What doctors like to call a disease. (I am not a fan of that.) I’ve never written it down quite like that before, that I live with a chronic illness. I don’t like that I live with a chronic illness. But I do. I’m surprised – sometimes stunned – that some unfortunate life circumstances have gotten me here. But I’m here.

I’ve written this post in my head so many times, yet shied away from writing and sharing it for so many reasons. Because it’s personal. Because who wants to hear about my auto-immune challenges? Because fixating on it doesn’t help anyone. Because I am tired of talking about it and thinking about it and dealing with it. Because I live it, and isn’t that enough attention to put on it? Because WHY?

But I wonder if maybe it could help for me to share. Not just to know I’m not alone (because I do know that) but also because I can’t possibly be the only one who struggles with something physical (and often invisible) in silence. I know I’m not, I’ve been inspired and moved when I’ve read posts and articles by friends and strangers “coming out” about their illnesses and struggles. And when I have shared my own story with friends, I’ve often gotten some form of, “I can relate!” from them.

We’re all dealing with something.

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I am by nature an optimistic person. I don’t give up when things get hard; there is always a part of me that hopes to feel better, that believes I can. That believes in healing (which is a complicated word for me). Overall I feel good. Overall I feel better than I felt a few years ago. When doctors ask me if I have any of the long list of conditions their questionnaires usually ask about, my answer is always, “Except for this one thing, I’m actually doing well.”

There are two ways I can look at myself and I’ve learned which one works best for me within the cycle of chronic illness.

There’s the micro-lens approach, where I look at every single detail of my body and health through a telephoto zoom lens to see ALL of the ZILLIONS of things that are going WRONG. Primary issue: My gut isn’t happy. Then: My hair is thinning. I’m always cold because I can’t keep extra weight on and my thyroid is probably low. My hormones are for sure imbalanced because I’m in my forties. My adrenals are definitely tired from years of physical and emotional stress. My skin is getting thinner and drier. etc. etc. This approach sometimes involves internet research, which leads to panic and despair, or sometimes hope that attaches to something that I haven’t tried yet that might, just might work (but usually doesn’t).

Then there’s the macro-lens approach. This is where I step back to get the BIGGER PICTURE, looking through a very wide angle lens instead of zooming in at the details. This is what I see through this lens: I’m happy. I’m peaceful. Overall I’m feeling better than I have in a long time. I’m healthy, and I have this thing that is a challenge and that I deal with. It’s chronic but it’s not lethal. And I know for the most part how to manage it. I know how to seek out good doctors and how to work with them and advocate for myself, essentially directing my own care. I am blessed to be surrounded with abundance and love and security. I eat well and take good care of my health and the health of my family. I have access to healthy ingredients. I have access to health care.

I am safe.

Can you guess which approach works best?

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I fluctuate between feeling acceptance and feeling frustration about my physical challenges. I’m starting to get that it is possible to feel both at the same time. For me, there is a lot of peace to be found in acceptance. I don’t like feeling as though I am trapped in my body and fighting against myself. Screaming out, “No, no, no! I don’t want to live with a chronic condition! How did I get here and how can I get out of this confining box?!” Because the thing is that I can’t get out of this body, and I don’t want to. I like it here. Very much. It’s the only body I know and it is the vehicle carrying my soul this time around. And I am nowhere near done with this time around, so this is the body I get till I’m 101 and I can go peacefully in my sleep.

My husband once pointed out to me that I have a lot of momentum invested in being sick. He’s right, and at the same time, I’m not really sure how to manage my condition without investing so much momentum in it. Because it is a lot of work managing an illness: Time in doctors’ offices, time and money spent at the pharmacy, time and money getting tests, time and money getting treatments, insurance paperwork to sort through, reimbursements to make sure I get, time reading about things that could help, the energy I spend thinking about what to eat that won’t hurt more than it helps. 

Fear. Fear is a lot of work. I don’t like fear, and most of the time I don’t live in a place of fear. The one thing I can’t quite shake, though, is the fear that I might never get better. That this is as good as it gets. And I mean better in a very broad sense, which is where acceptance comes in: For years I resisted accepting that I would need to live with taking medication (possibly for the rest of my life) to manage my illness. I was determined to get better, naturally, forever. (That was a very heavy burden to carry, a very abstract and untenable goal to reach.) Then one day, after literally years of specially tailoring and limiting my life and still feeling like crap, I surrendered. I went for the big guns and I took the heavy drugs. And I started to feel better. And I had about 9 months when I felt normal again, where it was all worth it, where I forgot I had an illness at all, where I could eat normally and go on long walks with my family. The acceptance paid off and I was able to relax for the first time in years.

Then a round of antibiotics for a sinus infection set the wheels of my illness in motion again and I’ve been trying for 9 months since to calm things down again. (Or, I’ve thought, it was all just a coincidence and the antibiotics had nothing to do with it, and the medication just stopped working; which, I’ve learned, happens.) And sometimes it feels like new things are starting that are also challenging. Sometimes it feels like I can’t eat anything without paying a heavy price later on. Sometimes I feel trapped in my house and fearful of getting in my car. Sometimes I feel like I want to tattoo my forehead with, “I have an invisible illness!” so that everyone will know and I won’t have to explain why I can’t do something or eat something.

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Recently I was at a holiday party talking to a man in a wheelchair. He was in his late fifties or early sixties and had been paralyzed at age 20 following an accident. He also lived with his own auto-immune condition similar to mine, so we had experiences that were shared and others that were not. And that is what we talked about, about disabilities that are visible and those that aren’t. About planning every inch of your life to make sure you can get through a day feeling good and functioning in a way that is expected by others. About the many things “other people” just cannot understand. All these things we talked about juxtaposed with my awareness the entire time that I really wanted to get a chair so that I wouldn’t be towering over him as we spoke, but every chair in the room was taken by other guests. All these things we talked about while I was aware of how strong my legs felt as they held me and moved my body. All these things we talked about as I felt so grateful to be understood.

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I think the lesson here must be about directing the momentum in another direction, harnessing all that energy towards the shift I want to create. Following the good feelings I feel and the good feelings I want to feel and calling on the rest of me – physical, emotional and spiritual – to move ahead towards those feelings. It’s a fascinating experience, learning that I can feel good amid something that is a struggle, rather than giving in to that struggle and letting it pull me under and take over.