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Journey to Joyful: My Life with Chronic Illness

Chronic illness can feel so isolating

Warning…

There are many words ahead. This is the ongoing story of my health journey. I call it a journey because I have certainly not arrived where I want to be just yet!

It started my senior year of college

I just had no clue it was starting. I was a competitive cyclist, a straight-A student, and a general go-getter. Slowly, it became more and more difficult for me to get out of bed in the mornings. I started to skip an unprecedented amount of classes, missing quizzes and important lectures. I started to sleep a lot, had trouble focusing on any schoolwork, started having a heart rate that would regularly stay above 235 bpm on every bike ride, started falling off the rollers during indoor training sessions over and over. I was so. sluggish. And I blamed it on senioritis and assumed I was just burnt out and things would be back to normal after graduation.

Season of change

Graduation brought with it a lot of changes. Pretty immediately after I was all moved out of my last college apartment, I was packing up to move to a new state where I knew no one and would start my first ever full-time job a few weeks later. Right after my job started, J proposed and we were suddenly wading through a long-distance engagement and debating where we would live and work and what that meant for our careers.

When it rains, it pours

The descent was like an avalanche – subtle and slow and then all at once everything was crumbling. If you struggle with chronic illness, you likely know exactly what I’m talking about. It started as rashes on my arms and a stomach that was sometimes really upset and a lot of back pain.

And then suddenly I was curled up in a ball on the couch every minute of the day that wasn’t spent at work. I couldn’t move or go anywhere or eat anything without being exhausted and in pain. I thought I might have mono. Then I worried I was just getting really lazy in my post-college years. Then I legitimately began to fear that I was going crazy.
I no longer recognized myself, and it was clear that J didn’t either. I didn’t know who this person was who had taken over my body – her affinity for sitting in a dark room doing nothing for hours on end did not make sense to me. The bitter and frustrated words that spewed from her mouth were foreign to me. She was angry and in pain and had absolutely no hobbies or activities or a single thing she enjoyed doing and I could not believe that she was me. But no matter how hard I tried to will myself to be better, it just didn’t get any better.

But what about doctors?

I did go to the doctor throughout this time – a lot of doctors, actually. I was desperate for answers. But answers never came. There was blood work and stool samples and EKGs and more blood work and it went on and on.

I heard a lot of ‘sort of, but nothing really’. “You’re sort of anemic, but nothing to really worry about.” “Your EKG was a little irregular, but nothing too out of the ordinary.” I was prescribed medication after medication for this or that and it was always just a temporary relief from the pain and exhaustion. I went to a chiropractor weekly, sometimes as much as three times a week, and each time he was unsure why I never got any better. I never made progress.

A sliver of hope

My chiropractor was actually the one who suggested I try meeting with a nutritionist, specifically one who is familiar with food allergies and chronic illness. I cut some things out (dairy, gluten, corn and soy) and temporarily felt much better. When I started to feel bad again, she took me through an elimination diet/detox that was somewhat of a combination of AIP and Whole30.

I felt better than I had in years. I went on regular walks. I held pleasant conversations. I finally started making friends after having lived in the same city for two years. I hiked and even exercised some and started creating art again. I was amazed and shocked and relieved and confused.

I worked things back into my diet, slipped back to a place where dairy was the only thing I restricted and all of my symptoms started to return. On the one hand, I finally felt like I had a solution. But on the other hand, I found myself fumbling through a confusing and trend-filled, mysterious world of restricted diets; a world full of misinformation and judgment and way too much pride.

A new normal

I felt very self-conscious about the whole thing. It’s one thing to be that person  who can’t eat anything normal and causes a scene at every restaurant – if a doctor has actually diagnosed you with something real and definable. But to be that person with no “legitimate” medical excuse for it is embarrassing and incredibly uncomfortable. And it turns out people have a lot of opinions about your choices to not eat things; and then they have more opinions when you have to explain why you’re not eating them.

I already felt crazy and exhausted and incredibly alone after years of useless doctors visits and feeling completely and utterly spent 24/7. And then suddenly, when people were giving me that look as I politely declined treats at work or food at restaurants, and they demanded to know why and what was wrong with me, and then their look became even more disbelieving as I explained that I have no idea what’s wrong with me but I was really sick and changing my diet made it better… whew. It was salt in my long-festering wounds.

And no one could really understand. I’m telling you, I’ve experienced other hard things in my life – loss and abuse and things that are undeniably difficult in their own rights  – but this was a whole different kind of difficult. I think the defining difference was that, with other hard things that have occurred in my life, they’re universally recognized as being incredibly hard. And people have empathy and they validate your grief and struggle in those circumstances.

But chronic illness is not yet recognized by others who haven’t experienced it themselves as a legitimate hardship. People who haven’t been there just assume you’re dramatic and seeking attention, or crazy and buying into whatever new phony medicine comes along, or they just can’t imagine it and don’t really care. And there is so much judgment in their eyes as you nervously and awkwardly explain that you’re paleo and that other foods make you sick and no that doesn’t mean you’re allergic to peanuts. (Sometimes I honestly would just tell people I had food allergies to avoid the whole thing, because it seemed easier – but then I would feel guilty about lying.)

The road ahead

For now, I’ve been taking somewhat of a break from searching for a diagnosis. I control the symptoms entirely by following a paleo diet, and it works pretty well for the most part. It’s not perfect, by any means. I still get rashes and hives down my arms if I eat a pretzel roll in a moment of weakness. My heart starts to constantly race and joints ache and I bloat and feel feverish when I eat things with real sugar in them too many days in a row. And sometimes, even when I’m doing everything perfectly I get a flare-up and I’m suddenly analyzing everything I’ve eaten in the past week and wondering how I messed up or what new thing I’ll have to cut from my diet.

But truly, I’m in a better place than I have been in quite sometime. Having my own little support system – people who either understand because they’re experiencing this too; or people who just know me and love me and are willing to try to understand just for me – has been tremendously helpful. They’ve helped me learn to have the courage to do what’s best for my health no matter what other people might think. They’ve helped me feel known and loved and seen in a world that can be very dark and isolating. But mostly, they’ve taught me how to not let chronic illness rob me of anything more than it already has.

At some point, I’ll go back to the doctor and I’m sure there will be more labs and misdiagnoses. But until then, I’m just doing the best I can and there is grace upon grace when the best I can do doesn’t seem like quite enough. And really, isn’t that just so true for us all?