Chronically determined

It took all the energy I had to open my eyes and roll over (in spite of the gorgeous midday summer sun beckoning me outside) — even changing my position on the sofa, where I had been all day in my comfiest sweat pants, was almost too much. 

“While looking perfectly fine on the outside, it’s hard to explain to others the daily struggles of life with a chronic, invisible illness. Sometimes, I am in so much pain that sounds bother me. ”

It was late August 2014, and I was in the throes of the worst ulcerative colitis flare-up since my diagnosis in 1995. I could no longer manage my condition. I was taking new medications that, according to my now-husband, left me in a zombie-like state and seemed to be making my disease worse.

At work, I was reporting to a new manager who didn’t know anything about inflammatory bowel disease (IBD) or ulcerative colitis. Up until this point I hadn’t needed to explain it to him. There had been no reason to let him into such a personal and embarrassing corner of my life. 

Now, I needed to tell him and my co-workers that I couldn’t make it through the workday or even come to work some days as a result of an array of painful and humiliating symptoms.

You don’t look sick. 

On the surface, I looked fine that August and had been healthy for some time leading up to this flare-up. While looking perfectly fine on the outside, it’s hard to explain to others the daily struggles of life with a chronic, invisible illness. Sometimes, I am in so much pain that sounds or even hearing my husband talking bothers me (I promise I love him dearly). I feel trapped inside my body, wanting to do a lot of things but only being able to rest at home near a bathroom. 

My instinct during a flare-up is to continue doing it all: work a full day, keep making it to my already-paid-for gym class, attend social events with friends, nurture my relationship, and take care of my autistic stepson’s needs. That works in the short-term, but it can cause all sorts of long-term issues because it’s near impossible to keep up. 

• I grow sicker from the stress of trying to maintain my usual pace. And then I feel like a failure. 

• I believe I’m not meeting the expectations I set for myself (self-critical). 

• I imagine I’m falling short of expectations others have of me (paranoid). 

• I end up overthinking and feeling like I have no real connection with anyone (disconnected). 

• Like no one gets it (lonely). 

I admit that the challenges of inflammatory bowel disease rouse toxic thoughts about myself and the condition. I allow myself a moment to wallow in self-pity be frustrated, and then I adopt a cheery attitude. I remind myself that I’m lucky and that a bad day/week/month/months doesn’t mean the outlook is so grim. 

I find reasons to smile.

My invisible illness is more real than your imaginary medical expertise.

Friends, family, and co-workers don’t understand what it’s like for someone to manage an invisible illness. I can go long periods — months to a year — living in remission before symptoms return with little warning and for no apparent reason. 

Once I share what’s happening to my body, the questions and advice come flooding in: 

What can you eat? 

Why don’t you try eating this? 

Oh, I forgot you can’t eat this. 

Can’t you take any medication? 

Take this medication. 

Take this supplement. 

Why don’t you just rest? 

You’re too stressed. 

You’re too skinny (you try living on a steady diet of broth and air). 

Have you tried chiropractic/acupuncture/meditation/yoga/insert therapy here? 

Everyone I know has given me advice on diet, exercise, alternative therapies, and stress management. And yet, they all have functioning colons. They mean well, but it can be frustrating to smile through the uninvited and uninformed advice.

The invisible fight.

My insecurities and anxiety about living with a chronic, invisible illness can be filed under one heading: guilt. During every relapse, I struggle quietly, lamenting the things I can’t do. I’ve always been a control freak box checker. When I relapse, I lose control over my body and day-to-day life. I might have to cancel plans last minute. I might not be present in conversation when a wave of pain passes over me. I might not be able to go to work. I might not be able to eat the same thing my family eats—or eat at all. I might not have the energy for menial household chores. I might not be able to jog around the neighborhood with my husband. 

I am at the mercy of my illness, and while sometimes I handle a flare-up with grace, other times, it leaves me feeling depressed. And yet, despite all the might-nots, there’s no use bemoaning my lot in life. 

I have colitis — but colitis doesn’t have me. I’m quite lucky actually because I have a loving support system around me. There is the one thing over which I do have control: choosing to be optimistic. Living with an invisible illness does not limit my ability or define me. I am what a person living with an invisible illness looks like. It’s not who I am. 

Planning for the mundane.

Thankfully, that August 2014 flare-up, while severe, was short-lived. The disease has reared its ugly head several more times since then. I’m currently recovering from a flare-up, dreaming of the days to come when I will:

• Once again be able to eat popcorn, nuts, fruit, veggies, lettuce, beans, and more. (Yes, I miss broccoli.)

• Leave the house with no worries about fatigue or restroom locations. 

• Not worry what my co-workers think when I have to leave early or can’t come to work at all.

• Be able to sit comfortably at my desk all day, without pain.

• Make plans and keep them.

Until then, I’ll rest, turn down invitations to dinner, and stay home in my pajamas. And when that remission comes, I will revel in all the things that seem so ordinary, like eating broccoli.