This Freedom is Not a Forever-Promise

Last January, I was diagnosed with lichen sclerosus, a dermatological auto-immune condition. In women, LS affects what I took to calling my lady parts. I hoped that term communicated a kind of breezy comfort with my own anatomy, an aspirational cheer about the reality of being a woman who could not wear pants without anxiety.

And then in September, I went to see the third doctor I’d consult about my condition. Weeks before the appointment, I’d had a blood draw to test all my hormone levels. The doctor shared the results: I had almost no testosterone in my system. Usually, women should have about a tenth what men do.

Having no testosterone can cause irritation in glands in, well, your lady parts. It’s a regular downside of pre-menopause.

He told me he didn’t know if I had LS or not: it’s only possible to confirm that disease with a biopsy, which no other doctor had performed. He suggested I wean myself off from the nuclear-strength steroids (doctors literally kept saying the word “nuclear” when describing them) I’d been on to see if LS lesions developed.

You’d think I would have been happy to learn that I might not have a chronic condition and get off of toxic medicine, but in fact, I felt angry and frightened. That summer, I had been experiencing bouts of real pain, a lot of insomnia, and a dislocation of my “normal” life. Most of that had happened after I tried to switch from steroids to a different medication. I did not want to go back to the hell I’d just exited.

He also told me I had a fungal infection, treatable with an over-the-counter cream.

I got the antifungal cream, a prescription for topical hormones. Then, somewhat reluctantly, I began experimenting with weaning from the steroids. Could I go to once a day? Stretch to two? 

To my surprise, to my absolute joy, all the pain—every last bit of it—went away. No lesions surfaced. It has been over a month and I am back to a normal I haven’t experienced for a year. I’m still not sure why I was in so much pain over the summer perhaps it was all a fungal infection from the beginning. Who knows? All I can say that I have once again been wearing clothes I had put into storage, sure I’d never use them again.

I have never loved skinny jeans so much in my life.

I thought a lot about chronic pain and disease in the months I thought I had one. I have always been an anxious person, but with therapy, fear went from driving the car of my life to sitting and chatting in the passenger seat, as Elizabeth Gilbert once put it.

But after the diagnosis, I could not predict how my body would function. Anxiety sprang up like kudzu.

It is humbling to realize that your peace roots in shallow soil.

Still, learning from other women who deal with chronic pain deepened me. Seeking help and advice from friends comforted me. Crying in church after terrible insomnia reminded me of God’s steadfastness.

I could have learned to live with lichen sclerosus. I could have. But oh, now that I don’t have it, I can see how much I had lost.

Each day is a rediscovery of a freedom I didn’t think I’d have the luxury to appreciate again. The luxury of wearing what I want to wear, of not worrying if a soap will irritate my skin. No anxiety from keeping damp clothes on after exercise, no knot in my stomach wondering if sex will hurt. No ache as I watch my husband walk a hard road with me.

But I’m also reminded: all this freedom is not a forever-promise.

I just finished Olive, Again, the sequel to Elizabeth Stroud’s Pulitzer Prize-winning collection of linked short stories. In it, Olive Kitteridge gets old, then elderly, and by the end, is experiencing life winding to a close. She realizes she has to wear Depends. She falls and cannot get up. She moves to an assisted living community and cannot find her place.

Reading it after my diagnosis-and-reprieve, I am reminded again how hard it is to appreciate the abundant freedom good health gives us. I never would have thought wearing pants would feel like a blessing. I never would have known I could feel anxious about hosting a group of people because of pain. Each day that greets me, I am filled with gratitude at all the ways that my body blesses me without me even noticing.

But it is a weird thing, wrapping your head around not having limitation that you tried so hard to submit to. I tried to be so cheerful and strong and wise, so determined to accept this diagnosis. Now I know I never had it in the first place. My body surprised me twice—both in being broken, and then unexpectedly whole.

I will take it. I will be grateful for the freedom I have now, and grateful for the increased awareness that the false diagnosis I received brought into my life.

Photo by Diego Rosa on Unsplash

Heather Caliri
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