I’m Angry About the New Normal

How a mid-life chronic illness diagnosis sucks

In August, 2017, I was diagnosed with lupus. It’s an autoimmune disease with no cure; one that has symptoms that can be treated — somewhat — but the illness itself can never really be obliterated.

And that sucks.

I’ve learned this very painful truth in a number of ways.

Cancelled meetings with friends. Embarrassing last-minute decisions to not attend an event that I had been excited about only a day previously. Aches and pains.

In the doctor’s office that day (a rheumatologist, if you really want to know), he gave me the news. In an equally clinical yet compassionate tone, he said “Your test results have come back and your blood work numbers indicate that you definitely have lupus.” Something about ANA, whatever. I was in a fog so I can’t tell you much more than what he had said.

My husband and kids were away camping, and I was on my own. I had said that I would be fine going to the appointment alone. “I can handle it,” I cheerily said to my husband before he drove north to the campground with one of our sons.

Yet, here I was: shell-shocked and stunned but, in my usual way, pretending that all was well.

“Oh,” I said.

“What does that mean?”

He said a bunch of what sounded like mumbo-jumbo, probably because I was in shock with my new diagnosis. I didn’t really know what this “new” illness I had meant, but I knew that it wasn’t good.

A Body Attacked

Lupus is a disease in which the body’s immune system attacks its own tissues and organs. There’s no cure for this disease and treatment consists largely of managing the myriad of symptoms (which are also so vast and varying that the disease is often misdiagnosed or missed altogether).

Lupus affects everyone in different ways. Some have symptoms that are mild and bearable; others are hospitalized and bed-bound on a regular basis. Almost all of lupus sufferers live with the unpredictability of the disease. You just don’t know how it’s going to play itself out on any given day.

Some days you feel fine and are able to function. Other days, not so much.

And then there’s the drugs. Lots of them if you’re lucky (unlucky?). They do a number on your body and while helping to keep the illness at bay, they come with their own side effects. I guess that’s a good thing?

But details about how this disease manifests itself is not the purpose of this article. No — quite honestly, this piece is a mechanism to vent about the life lottery that bestows different attributes to every individual. In the life lottery, I’ve been fortunate in many ways. But there’s this one thing….

The question then becomes: Is it okay to be angry about this reality? Life could be worse, could it not? Everything is relative, right?

Acceptance? Is That Really Possible?

In an ideal world, acceptance would completely overtake the anger about this diagnosis and I — and so many like me — would go along on my merry way, dealing with the realities that this disease imposes on me each and every day.

But the imperfection of being a human being results in the aforementioned anger.

Why me?

Why not me, one might respond.

No one has the answers about how and why things occur to each of us as life is a great big mystery that we’re all trying to figure out as we go.

Those of us with more challenges than others vacillate between feeling that “life’s not fair” and “I’ve got this — no big deal.”

And such is the inconsistency of living each day with an unknown; an unexpected occupant of the body that rears its ugly head when it sees fit.

If I could change it I would. It’s not easy living with the uncertainty of an illness that takes over your body and, in the worst of times, destroys your soul. It’s about being determined and forward thinking in the midst of aches and pains; it’s about being laser focused during a lupus fog. It’s not easy.

But then again, no one said life would be easy, health-wise or otherwise.