Why I Tell People Chronic Illness Is 'a Marathon, Not a Sprint'

“It’s a marathon, not a sprint.”

It’s something I tell people all the time about chronic illness. I know this in my heart, I know this in my head and on the good days I know this and understand. On the bad days, I’m tired of the fight, I’m exhausted from the non-stop battles, I’m weary and need a break.

Today is one of those tough days. Yesterday was my second infusion for my condition, and I spent two hours in the infusion chair receiving a drug cocktail that may or may not be a “wonder drug” for me, like it has been for many. Or, on the flip side, it may cause cancers, dangerous infections or plenty of other terrifying ailments that were on the consent form I signed to start the treatment. While the day itself was fun because one of my best friends joined me and we made it a fun time, the after effects – not so much. The day after I’m tired. No, not tired, roadkill tired. Like, “Did you get the number of that Mack truck that ran me over?” tired.

To add to the fun, my tooth cracked last week. Dental problems are very common amongst those with lupus, Sjögren’s syndrome and other autoimmune problems. The day before the infusion I saw the endodontist, who sent me to the oral surgeon, who told me the tooth needed to be extracted. With anyone else, the tooth would have been out that afternoon.

But, of course, being “medically complex” it’s a whole big hairy deal involving calls to doctors, discussions and debates about medications. The oral surgeon wants me to return the next day after having the blood thinner for 24 hours, but I already have my infusion scheduled. Then, due to scheduling, I have to wait two more days.

So here I am, my tooth is throbbing, I’m tired and I feel like I’m starving because of all of the steroids, but I can’t eat anything solid. But there’s no time for self-pity since this is not a short-term problem. Most people get sick and curl up for a few days and it’s over. When you have chronic illnesses like lupus, fibromyalgia, and diabetes, there is no simple recovery. In fact, there is no full recovery.

Sure, there are better days than others and some will be worse. But the one constant will be illness because right now there are no cures for at least five of my major illnesses. I don’t write this for your pity or praise. I don’t write this for your attention. I don’t write this to be admired and frankly, the view from this pedestal that some like to place those of us that are ill and disabled on is pretty precarious.

I write because I’m tired and I need to remind myself that it’s OK to be tired. I write to share with others that are in this marathon with me. I write because I’m hoping tomorrow is a better day. I write because it’s exasperating when people ask me if I’m “feeling better yet.” I write because I’m sitting here sipping a milkshake for dinner because I can’t chew anything, and even though it’s not even 7:30, I’m ready for bed –despite being in bed most of the day.

But tomorrow’s another day and the bad tooth will be extracted… after I go see my daughter in her camp play. You see, I may feel miserable, and things may be miserable, but I’m a mom, wife, daughter, sister, aunt, friend and teacher. I have a life I want to lead in some way, any way possible. And as my husband helps me up the stairs to put my weary body to bed tonight we remind ourselves, “It’s a marathon, not a sprint.”

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