Scleroderma Has Dented My Ego and My Forehead
Having a rare disease often means dealing with uncommon symptoms. Sometimes I get lucky and one of my specialists can explain and treat them. However, the mysteries of my scleroderma-stricken body usually leave my medical team scratching their heads.
Every time I meet a new doctor, I leave the appointment with a dented forehead — literally. I’ll have a golf ball-sized indent somewhere above my eyebrows.
Why? Because I put it there, in the hopes that someone can explain why my forehead is so swollen. When I press on it gently, a dent forms and remains for up to 12 hours.
Lisa creates an embarrassing dent on her forehead by pressing on the skin gently. (Photo by Lisa Weber)
Symptoms vary with scleroderma types
There are many types of scleroderma, which can be categorized as systemic or localized. Linear scleroderma is a localized form of the disease that can cause thick streaks of skin, which may be visible and permanent.
That’s not what’s causing my issue. I have systemic scleroderma, so my specialists don’t know why my forehead is mushy with fluid. It’s an unknown form of facial edema. It’s not permanent, but it takes many hours for the skin to return to its usual state. My specialists have seen it before, but there’s no known cause. The most I’ve gotten are a few shrugged shoulders and scratched heads.
I just want to be healthy and normal
Naturally, I want answers. Why is the top half of my face swollen? If we knew the cause, there’s a chance it could be treated. I just want it to stop happening and to know for sure that it’s not a precursor to something more dangerous.
When I consider all my ailments, though, an indent on my face seems minuscule. So why does it bother me so much? The simple answer is vanity. Like many people, I want to go out in public and fit in. I don’t want to receive awkward stares. At least a giant pimple on the nose garners a bit of sympathy, since most people have had one at some point. But a crater on my face? That confuses people and makes me stand out.
This strange malfunction embarrasses me. Sometimes when I’m sleeping, I unknowingly rest my hand across my forehead or lie my head on my arm. If that happens, my prize is a stamped forehead for the rest of the day. It can also happen if I wear a hat for even a minute. There’s nothing like walking around looking like my face was in a fender-bender. I’m a real-life Humpty Dumpty.
Taking back control
Like everything scleroderma-related, I’m not in complete control. I can only try to make the best of it. I remind myself to focus on the big picture and laugh at the little things. If I laugh enough, I can trick my mind into believing that I’m OK with the situation.
One of my favorite songs is “100 Bad Days” by alternative group AJR. The lyrics say it best: “A hundred bad days made a hundred good stories/ A hundred good stories make me interesting at parties.”
My dent is a conversation starter, a chance to turn awkward stares into giggles that connect us.
Since it’s not difficult to create a dent, I regularly press my knuckle into my memory foam forehead. Within seconds, the magic trick is complete, and I turn my stand-out moment into a comedic performance. People’s questions and confused expressions become setups for my punchlines: “I’m special,” “I’m a softy,” “I’m made of play dough.”
If I can get the people I care about to laugh with me, sporting my caved-in forehead look isn’t so uncomfortable. Plus, I take away their power to laugh at me, and the power my illness has over me. Joking about my forehead dent puts me back in control.
Until doctors discover a cure, my best defenses are to find humor, roll with it, and keep my arms away from my head when I’m sleeping.
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to scleroderma.
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Susan Parlo
I love you (bangs?)more! Xxx
Maria McDonald
Thank you for sharing your experience, I have a vertical line in the middle of my forehead, I've been hiding it with bangs. I have sine scleroderma and have been experiencing migraines, mind blowing tinnitus, vestibular vertigo and I can't help but think it is related to scleroderma. It is such a wide spectrum of symptoms and types. Most, if not all, of these symptoms affect our lives in very different ways but all of them it seems are life changing and very difficult to endure.
Patricia Gilligan
I also have a "swollen" head! It started out as a dent from wearing my baseball cap when walking. At some point it became permanent and is now a ridge down my forehead. If I sleep on my side I will sometimes have lines on my face that take hours and hours to go away! At least I know it happens to others too, thanks for this.
Lisa
Yep, same for me. I press on my forehead and the indent will stay there for hours. I have scladerma & Sjrogens.
Julie
You should look into seeing a Functional Medicine practitioner. Unlike traditional doctors, they find the root cause of the problem so you can fix it. Most likely gut health and insulin that are driving the problem.
D. M.
Lisa I can relate. I have lived with scleroderma since 1992. The swollen face became noticeable in 2003 when using swim goggles. I had the imprint of the swim goggles around my eyes for many hours before it would go away. When I had to go somewhere important I wouldn’t swim therefore it affected my life in being purposeful to exercise. Swimming is the only exercise that feels not so taxing on my body. I feel so good afterwards. None of my doctors knew what to do for me either. I would tell them and they just looked at me with the I don’t know look. I have Reynaud’s and Sjogrens too.