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When a Diagnosis Doesn't Make Everyday Life Easier

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There were the early months of being ill — those months when I naively believed a pill or potion would eventually fix me. I believed once I had a diagnosis everything would get easier. I believed a diagnosis meant understanding and validation. I believed a diagnosis meant an eventual lessening (or a possible end?) of symptoms. I thought the key was a diagnosis. I was painfully wrong.

Please, don’t misunderstand. Getting a diagnosis was key. I have all the compassion in the world for those who are spending their days hoping to find a name to whatever is wreaking havoc on their bodies. I remember those days, and I wouldn’t wish them on anyone. However, I realize now that a diagnosis doesn’t make everything better. I have a name for my constellation of symptoms; I’ve found people who can commiserate with my situation. I haven’t, however, found an answer to the “everyday-ness” of being chronically ill.

For example, my husband is a college professor. He is enjoying his summer break, and I have looked forward to having him home all day since school started last year. Here’s the problem — now that he’s home every day, I’m very aware that he and I keep very different hours. I’m exhausted. I’m always exhausted. No matter where I’m at on any given day, I can nap. Park bench? Poolside? Grocery check-out line? I can sleep there.

My husband is an incurable early bird. (Believe me. I’ve tried to cure him of this ailment.) He stomps and sings and slams doors beginning at 6 a.m. I, on the other hand, need a solid 12 hours of sleep. (Left to my own devices, I’ll sleep 16 hours or more, so only sleeping 12 hours is a sacrifice, really.) I’ve tried to function with less, and I end up exhausted and ill. Joe (my husband) is awake early and wants to go to bed by 10 to 11 p.m. I’ve only been awake 10 or 11 hours at that point, so I’m still chatty. We spent the first month of our summer together as ships passing in the night. He had six hours alone in the morning before I awoke. I spent a couple hours perusing social media after he went to sleep. We had plans for the summer. We both had huge book ideas that we planned to explore. He was getting tons more accomplished than I, because I was asleep. I was bothered by his progress and my total lack thereof. It happens.

This resulted in frustration. Ultimately, we lived in the same house, but Joe mostly saw me sleeping rather than awake. He was spending his summer married to an unconscious woman — not exactly the stuff of which summer dreams are made. We had to find a solution, or at least a plan that worked for us. So, we’re trying. I’ve set waking goals and sleeping goals. Joe wakes me up an hour or so after he gets up, and I get to enjoy my first cup of coffee as he’s having his last. I’m finding more time to write. I’m coming closer to meeting the goals I’ve set for the summer, More importantly, I’m seeing my husband more.

This also results in me being more tired. I require afternoon naps (OK, afternoon naps and evening naps even occasional mid-morning naps). This isn’t the perfect solution, but it is the only one that works for us right now.

You see, no one tells you chronic illness is a life sentence (for most of us anyway). No one tells you that you will forever be trying to manage your fatigue and pain and the whole emotional roller coaster of illness while trying to nurture the relationships that are important in your life. No one tells you that being sick all the time is going to put a strain on every relationship. Mostly, no one tells you how very hard this life will be.

Having said all that, I want to tell you the most important thing to know — it’s worth it. This life is hard and painful. People will walk away from us, because they can’t handle our illness. The ones that stay are worth the struggle. They’re worth setting an alarm clock to have an early cup of coffee (OK, it’s around 9 a.m, but it feels early!). They’re worth staying up late to watch a movie whenever possible, even if it means a late start the next day. These people that surround us are worth the struggle. Even if the struggle is harder than you could have ever imagined.

Originally published: July 5, 2016
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