It’s been very difficult for me to write about my illness. In fact, when I got sick, I stopped writing altogether. But it’s time to address it. I’m ready…
To say that the last few Thanksgivings were challenging for our family is an enormous understatement.
I became sick in early October of 2016.
For six weeks, we did not know anything except that we did not know anything.
Why was my hair falling out?
What were these strange sores on my scalp?
Why did the entire left side of my face hurt? My eye, my ear, my jaw, even the inside of my nose.
Why was I having such a hard time breathing?
Why did I continue to lose weight from my already skeletal frame, despite eating all the healthy food I could get my hands on (and, admittedly, too many McDonald’s cheeseburgers, my go-to stress eating food of choice)?
Why did even the simple act of showering and getting my kids off to school exhaust me to the point of passing out?
Why was I getting headaches that dropped me to my knees, prompting multiple visits to the emergency room?
CT scans and MRIs came back clear.
Initial blood work was normal.
Doctors and nurses stood outside the exam room door, whispering words like cancer and lupus, only to come into the room moments later with fake smiles and no answers.
Specialists were afraid to biopsy my scalp because they feared it would trigger an even worse reaction.
It seemed no one wanted anything to do with this mysterious illness, or me. It was terrifying and lonely being stuck inside a broken body that no one knew how to fix.
Finally, a brave nurse practitioner at our local small town hospital took what she admitted was a messy biopsy of a sore on my head.
One week before Thanksgiving, she called with the results.
Her voice was grim, and I was certain I already knew what she was going to say. Cancer.
When she told me that I had an autoimmune disease that would very likely lead to “severe scarring alopecia,” I was thrilled.
“That means you are probably going to lose most of your hair, and it will never grow back,” she said. I’m pretty sure she thought the stress had finally led to a complete mental breakdown. Why did I sound so happy?
“So I’m not dying?” I confirmed.
“No…” she said, still sounding troubled. “But this is going to be a lifelong illness. This isn’t something that just goes away. You’ll need more tests. I’m referring you to a rheumatologist to give you a full diagnosis. All this biopsy shows is autoimmune disease. We’re not sure how extensive it is at this point.”
“Great!” I responded. She hadn’t told me I was going to die, and she had ruled out cancer.
I felt hope. But I did not feel physically better.
In fact, over the course of the next two and a half years, I would get much, much worse.
Thanksgiving 2016 came just one week after the return of the biopsy results. While I was retrieving a casserole from the back of our car at my in-laws’, I hit my head on the opened door.
My then 10-year-old son grabbed the glass pan from my hands as I slid to the ground. My husband’s helpless expression as he held me in his arms in the street when I came-to a few seconds later was terrifying.
Was this our life now?
I really don’t remember that Thanksgiving. I know I acted strange. I have vague recollections of awkward conversations as people tried to be friendly.
Aside from my dramatic weight loss, I still looked relatively normal on the outside. If I styled my hair right you couldn’t see my bald spots. Nobody really knew what autoimmune disease was. No one knew how sick I was. Not even me.
It’s hard to explain this disease.
Basically, your immune system goes berserk, fighting off imagined illnesses and attacking healthy tissues throughout your body. The different diagnoses are determined by what part of the body your immune system attacks.
Rheumatoid arthritis attacks your joints.
Raynaud’s attacks your circulatory system.
Sjogren’s attacks the glands in your face, including tear ducts, mouth, nose, and ears.
Lichen Planus attacks your mucus membranes, finger and toenails, and hair follicles.
There are hundreds of autoimmune diseases. These are mine. So far.
Eventually my body ate my reproductive system alive, and it had to be removed. Nobody seems to know why. I’ve never been given a name for it, but it is apparently not uncommon.
(I can’t help but wonder if it were male reproductive organs that were literally exploding inside the body perhaps there would be a name for it, but that rant is for another time.)
There are still many unknowns about autoimmune disease.
At some point, you have to just accept that something has gone haywire, and get about the business of living, in spite of it.
Against all odds, and despite what numerous doctors told me, my hair did grow back. As I learned to manage my disease I slowly met and then exceeded all expectations of recovery.
As reluctant as I am to talk about this difficult chapter of my life, I feel a responsibility to others struggling with this strange illness. I want them to know that a return to relative health is a possibility.
I’ll never be “healed.”
I’ll never not have this disease. And there’s always the risk that it could become angry again, and tear me apart from the inside out.
Just last week my hair started falling out again and my breathing became labored. But I now know what it is, and I give myself permission to rest.
This Thanksgiving, I know what I must do to take care of myself, and I know what happens if I don’t. I’m not going to force myself to make a casserole despite struggling to breath.
I’m bringing a store-bought pie. And I’m not sorry.
I’ve learned so much the past three years.
I’ve learned I’m a lot stronger than I ever imagined.
I’ve learned my husband is a rock star, and a saint, and a comedian, and a gift from God that I do not deserve but will never take for granted.
I’ve learned that my kids are resilient, and if given the chance, they will rise to the occasion and take care of themselves and each other far beyond what I gave them credit for.
I’ve learned that trying to be all things to all people is bad for your health.
I’ve learned to ask for what I need.
I’ve learned to say no to things and people who make life harder than it already is.
I’ve learned that most people like to help almost more than they like to be helped.
I’ve learned to appreciate the sound of my husband reading bedtime stories in the next room, my kids’ laughter at the dinner table, every hug, every failure and success, every skinned knee and heartbreak, every cracker crumb on the floor, every sunrise and sunset, every whispered prayer in my ear when they thought I was asleep, every morning when my eyes open – even when it hurts, every friend – new and old, every chore I can complete, every chore I can’t finish until after I’ve rested.
Every. Little. Thing.
For this, ladies and gentleman, is the stuff of life. And I’ve learned that it is fleeting. And gorgeous, even when it hurts.
Copyright © 2019 Sara Beth Wald