The Moment I Truly Realized That My Chronic Illness Is Lifelong

I had a “Woo-hoo” moment yesterday when opening an email that stated I no longer had to obtain a medical provider certification to renew my medication card. I thought “Yes! I don’t have to have this hassle (and expense) every couple of years.”

This morning, I woke to re-read the same email. The reaction wasn’t so woo-hoo as it was boo-hoo. The underlying reason was stated in black in white on the page before me: “Your diagnosis has been deemed as a lifelong condition by your healthcare provider.”

Life. Long.

As in never recover. Your whole life.

My logical brain has known this. There is no cure for ankylosing spondylitis. There is no cure for lupus. Just management, a treading water of progression. My laundry list of conditions goes on and on, but the revelation of the terms hit me anew.

Life. Long.

The knowledge of this seems a bit surreal. I have known that I will battle illness the rest of my days, however long that may be. I have been the one to speak those words. To own that truth. But here, on the screen, the words of truth are pointed directly back at me.

Life. Long.

I do not share for sympathy, but for solidarity. I know my struggle is not unique. I know that many suffer in silence and for anyone that knows me, I’m rarely silent. There are tens of thousands of “invisible illness” patients across the globe. We don’t “look sick.” Not all of us need mobility support devices: canes, walkers, wheelchairs. Not today, anyway.

Recently, I had a medical provider suggest that I use a cane for the days that I’m struggling. I was so horribly insulted — and then strangely thankful. To be seen and validated that my medical condition may make navigating life a little daunting, wobbly, and painful. In that moment, it was my ego that was wounded. My body is already there.

Pride and ego are far more destructive than disease. Pride and ego can destroy relationships, but we rarely look inward, to the relationship we have with ourselves. We have made “self-care” a bad thing. A selfish thing.

Self-care is an essential thing. It’s not all bubble baths and candles, although those are wonderful. Sharing our needs and our limitations is also a form of self-care. Being truly honest with ourselves ventilates a space where we can allow others to meet us on our journey.

While some may perceive that we are faking an illness, we are actually faking our wellness. Chronic illness patients are masters of disguise. We put on happy faces. We trudge through the muck and mire of daily tasks that seem mundane for most. We don’t want pity. Personally, I despise pity.

I seek empathy.

I seek awareness.

I seek understanding.

Yes, I understand the “walk a mile in my shoes” proverb; but I can barely walk a mile most days. And for that, I seek your understanding, not sympathy.

When you see the tumbleweed of dog hair roll across the plains of my wood floors, I seek your empathy, knowing that the hardest household chore is cleaning my floors.

I don’t believe that I should have to wear a placard or sticker or utilize a mobility device to garner awareness. But that’s what most people view as being disabled.

As I re-read my email for what seems like the millionth time, a new perspective washes over me. A perspective that says you are seen, you are understood, you are cared for.

We see your disease.

We understand it’s incurable.

We care that you have as many low-symptom days as possible.

And my humble message, as I hit reply, is simply this — “thank you.”