Personal Grooming With a Rare Disease

Living with a rare chronic disease isn't for the faint of heart. I live with type 1 narcolepsy, and the long list of things it impacts in my life is impressive.

One of the many aspects of my life that is affected by my rare disease is how I groom myself. Some of these changes are not socially acceptable, and I've often been questioned about my "choices." It is often difficult for able-bodied people to imagine that my rare disease affects my life decisions to this degree. Little do they know, a chronic rare disease like narcolepsy can affect everything.

I keep my hair cropped short to reduce grooming needs

Before my narcolepsy onset, I always had long, very curly hair. This kind of hairstyle, although what I was born with, required quite a bit of daily maintenance. After my narcolepsy onset, I was suddenly struggling to take care of myself in simple ways, including my curly hair upkeep. Cutting it all off was a bittersweet moment. Seeing it all fall away was difficult, but I knew it was the right choice for me.

People talked, though, asking me why I'd cut off my gorgeous hair or saying they liked my hair better when it was long. Little did they know, I made the decision out of necessity – not style preference.

I have since come to love my short hair and to feel at home in it. But some small part of me still remembers those remarks and the feeling of shame and helplessness that surrounded their receival.

I often skip makeup

Even though I am expected to wear makeup, I skip it often! And I get treated differently when I do.

Before my narcolepsy onset, I used to love doing my makeup for hours on end. It's an artistic craft, one that creates different personas within myself. I love it!

However, after my narcolepsy onset, I suddenly had no extra energy available for makeup. It became less of a daily thing and more of a weekly thing. I've since stopped wearing foundation to smooth out my complexion entirely.

I've noticed that I get treated differently when I go without makeup or when I have short instead of long hair. People are less likely to smile at me, or hold the door when they see me coming. I've even noticed instances where I am overlooked when I don't wear makeup.

Although there are social benefits to presenting a certain way, it isn't always possible to put in the effort to do so.

I am hairy, and that bothers people

Shaving is another grooming practice that fell by the wayside due to my rare disease. It is customary for femme-appearing people to be expected to shave everything from armpit, legs, and anywhere else displaying body hair besides scalps and eyebrows. This kind of upkeep was routine for me.

However, now that my rare disease symptoms have onset, shaving body hair is not something I have the effort for. I get weird looks for it sometimes. I used to hate my body hair. Now, I accept it as a natural part of my body, the same as my nails or skin or anything else.

Does your rare disease affect your grooming practices? Share with the community in the comments below.