I have a secret.
I have morphea.
Morphea is a rare and incurable autoimmune skin disorder, and it’s something I have been living with for the last two years. It’s pronounced MOR-fee-uh, like “metamorphosis” or the Mighty Morphin’ Power Rangers.
Morphea is rare in the sense that less than 200,000 people in the U.S. have it. I’d never even heard of it until my dermatologist mentioned it. It appears to be slightly more common among black people and women, so I won that terrible lottery.
It’s incurable in that, well, there’s no cure. There are treatments that can help with various effects, but it’s not like a cold or rash or even something that can be managed with medication. No one knows how it begins. Once it begins, it can spread quickly or slowly. It can worsen over a lifetime or stop spreading altogether. It can suddenly get worse after years of stagnation. It might be exacerbated by skin injury, some attempts at treatment (nice, huh?), or even pregnancy. It is possible to have all of one’s morphea patches disappear completely without any treatment at all.
It’s autoimmune, which means that I didn’t catch it, and you can’t catch it from me. Autoimmune disorders of all kinds are particularly hard to treat because they vary as much as individual humans do.
About two years ago now, I noticed some weird bruises on the front of my calves. I didn’t think much of it. I am tall, and I got tall fast when I hit puberty. I’m still a little bit clumsy, so it’s not entirely uncommon for me to, say, bump into a door frame and forget about it until a bruise turns up later. These spots didn’t hurt, which was weird; bruises tend to hurt at least a little. I mostly ignored whatever was happening, choosing to wear maxi skirts, pants, and leggings to cover up.
I don’t remember exactly when the not-really-bruises first appeared, but I do remember that the cold weather came fairly quickly after I noticed, because I was relieved. It’s not so obvious and not so much work to cover up my legs when it’s cold. That detail places the onset of my morphea at roughly summer 2014.
When spring 2015 came, I resumed my careful wardrobe selections. That lasted for the rest of the year. I’m good at hiding, remember? As I scroll through my What I Wore Sunday photos, I’m still surprised that you can’t really see anything.
Yet the weird discolorations remained. They still didn’t hurt, but they’d spread to the area just above my knees. I knew enough about skin to realize that the spreading was not a good sign. But I didn’t have a good enough reason to want to go through the trouble of figuring out what was wrong.
Early in 2016 is when things started to change. I found myself scheduling the first in-person visit with my long-distance boyfriend, and I realized that I couldn’t just keep hiding. He deserved to know.
When we were finally together, I decided to stop hiding. Obviously, he was concerned. I was, too. A little bit more. Finally. I made an appointment with a family practice doctor, who sent me on to my dermatologist. I was still dragging my feet, so I didn’t make it there until Memorial Day. Better late than never?
The dermatologist first suspected granuloma annulare (GA). She took two punch biopsies to send to a pathologist, hoping that if one wasn’t clear, the other would be. I left with two band-aids and one stitch.
Unfortunately, she had to take the punch biopsies from the back of my calf, so the scars are very noticeable. She did help by pointing out that the backs of my calves have much darker and more widespread patches. I hadn’t noticed. Think about it: how often do you look at the back of your calves?
In retrospect, GA might have been worse than morphea, because “granuloma annulare” is kind of a fancy medical term for “we don’t know how this happened to your skin, and we don’t know how to fix it, but it might go away.” It’s like Bell’s palsy, but for skin conditions instead of muscles.
In reality, the results came back inconclusive for GA but possibly indicative of “early morphea.” The pathologist had not examined my skin, so he couldn’t have known that, clearly, I did not have “early” anything.
So I went back to my dermatologist for another, more extensive biopsy. This was when I finally got scared. There are 3 levels of skin biopsy: shave, punch, and excisional. The punches hadn’t been clear enough for a firm diagnosis, so we needed to dig a little deeper. Literally.
I tolerate physical pain and discomfort pretty well; most women do. So I was okay as the nurse numbed two new spots on my leg (the same leg as before). I was even okay with the actual pressure and pulling I felt during the procedure. She only needed one spot. But this time, my doctor was wearing scrubs. She’d laid out sterile blankets to isolate the surgical field. It was really cold in the exam room. It felt real, and I was scared, and I was alone.
This biopsy required more stitches, and it hurt a lot more after the anesthesia wore off. I hobbled my way through work, back to hiding my legs under long skirts. I felt defeated, and I hoped desperately that this one, this time would work.
A few weeks later, the pathologist’s diagnosis came back. It was morphea; no question. I had scars, and I still had all my patches, but at least my weird skin discoloration had a name.
Treatment, and a Brief Detour
My dermatologist prescribed a topical corticosteroid and a vitamin D cream, in addition to a follow-up appointment to check their progress. I used both faithfully, although I did accidentally leave them in the trunk of my car during a hot, hot afternoon in Houston.
A few weeks after I started treatment, I noticed some red bumps all over the front of my left leg. (Same leg.) I also wondered if my mostly-healed excision was supposed to be quite that pink, and if that bump on the edge was okay. You might think that I would be more cautious about weird things on my legs post-diagnosis. You would be wrong. After one very painful leg-shaving and a couple of days of calf selfies to verify that I wasn’t seeing things when I thought the bumps were multiplying, I went to my previously-scheduled appointment.
“How’s everything going?” asked my nurse as we walked back to the exam room.
“Well, the morphea patches are basically the same, but I’ve got some new problems I was hoping you could check out for me,” I replied.
This diagnosis was much easier, although I was getting a little tired of getting things cut off my legs every time I saw my dermatologist. I had a bacterial infection called folliculitis (on both legs at that point) and a staph infection in my incision scar. So I stopped using the morphea creams and switched to antibiotics and antibacterial lotion.
I have never had so many prescriptions in such a short time.
Just over a week later, I was back to patchy business as usual. I am not currently pursuing any treatment plan. This condition is so mysterious that the basic course of treatment is not specific enough. My morphea is not nearly as bad as some of the photos I’ve seen and descriptions I’ve read, so I’m satisfied with watching and waiting. And I should probably not get a tattoo.
Life with Morphea
Once I had my diagnosis, my confidence started to return. Except for a brief detour through folliculitis and staph, I haven’t let me morphea hold me back. I spent almost two months keeping my excision scar covered with a Band-Aid whenever it would otherwise be visible, because I was not about to let it get infected again. That goal is how I discovered that you can buy a whole box of standard-sized Band-Aids.
Now, I wear whatever I want. I think people notice my morphea patches, but most of them are too polite to say anything. Or they are strangers. In over two years since onset, only one person has actually asked, and I can tell she asked because she was concerned about me. “I don’t know what’s up with my legs” was a really unsatisfying answer. This isn’t great, but it’s much better.
I also belong to a closed Facebook Group for people who have morphea, and we suspect that it might be more common than the medical definitions suggest. Mild cases are easy to mistake for birthmarks or stray skin discolorations. But no one’s really researching it, so it’s tough to tell beyond anecdotes.
This is just my life. Morphea is a part of who I am now. It’s just one of the many things that make up my crazy, beautiful life.
If you Google “morphea,” you’ll notice a distinct lack of results. It doesn’t even get the special medical information box. The first reference I turned to is from the Mayo Clinic, and that’s where I would point you first. The Mayo Clinic has a great, brief, detailed overview of what morphea is and how it’s diagnosed and treated.
The Wikipedia article on morphea is pretty informative, as its articles tend to be. Notice how it is also brief. That’s the rare part shining through.
The National Institutes of Health classifies morphea as a rare disease and also as a kind of scleroderma. (Morphea is sometimes called “morphea scleroderma.”) Most forms of scleroderma are much worse than mine and can damage internal organs, though, so I’ve been reluctant to take that label.
The Journal of the American Medical Association for Dermatology (JAMA Dermatology) offers some useful and not gross illustrations of several kinds of morphea.
Michelle Liane Gerovac is a professional photographer in Canada. She also has morphea. Hers is the kind called “en coup de sabre,” which is a French term describing skin discoloration or malformation that looks like one has been hit in the head with a sword, but it’s essentially the same thing I have.
Vitiligo is kind of the opposite of morphea. Morphea tends to darken skin pigmentation in its mildest form (like mine); vitiligo removes skin pigmentation, lightening it. Michael Jackson is said to have had vitiligo. The Catholic women’s online magazine Aleteia For Her shares a story and photos of a model who has vitiligo. I can relate to her attempts to mask the reality of an incurable skin condition.